Message posted: 2008-11-17 19:25:26 by Sue
Hi Sara. Glad to hear you are over the first hurdle. Don't push yourself too hard too soon. We are all so very different and admit I rushed back to work after just three months. It was a big mistake for me because of the type of work I did and the rehabilitation was virtually none existent. Listen to your own body and not what some in the medical profession might say you're capable of. Enjoy the rest.
Message posted: 2008-11-17 14:51:00 by Kerry
Hi Sara - Glad your home and over the worst part,just make sure you now get lots of R&R.! I think recuperation is different with every individual, I was off work for 3 months, but it really just depends how you feel! My tumours were fortunately also benign so didnt have to have any follow up treatment. I have varying degrees of numbness in leg and foot, they told me that its nerve damage and may or may not get better, but apparently they take a really long time to heal (if at all). Look after yourself, enjoy daytime TV. Take care Kerry
Message posted: 2008-11-16 17:49:01 by Sara
Thanks to Alison Rachel and Sue, Just back home after 3 weeks in hospital. They have removed most of the tumour and say it is benign - now have to go back for MRI's of brain and spine, and to find out what happens next, maybe radiotherapy? Feel very feeble at the moment, and have been left with numbness on one leg , backside and groin. No one seems too concerned about that. I have been given no idea how long recuperation might take - is it completely variable from person to person? Anyway first step over! Sara
Message posted: 2008-10-28 19:05:07 by Alison
Hi Sara, I do hope all has gone as best to plan as it can for you. I used to live a walking distance from the QE but now come under Staffordshire and go to Stoke for treatment. If there is anything you would like to ask I'm happy to help. The main thing I can say initially is that these are big ops and you have to have good time to get over the surgery. Improvement will continue to happen over many months into the first couple of years. Alison
Message posted: 2008-10-22 22:31:20 by Rachel
Hi Sara, I had an ependymoma of my lower spine removed 18 m ago - a total lumbar laminectomy. It is pretty scary, but you get through it. Mine was removed, but I now have to have another op in 2 months as there are a couple of bits left at the very bottom of my spinal cord. My body is alsot back to normal - just back ache if I run or stand up for a long time..it's amazing what neurosurgeons can do.
Message posted: 2008-10-22 12:42:59 by Sue
Hi Karen. I am one of the people that has a very similar condition to you. My Neurosurgeon will only progress with radio therapy should my residual tumour show signs of regrowth but then I have to live with the knowledge that there is something in my spinal cord which shouldn't be there. I have never asked my Neurosurgeon what the risks will be if I should ever need to have radio therapy on the residual tumour. Like you I also embarked on exercise but realised my residual symptoms were getting much worse. I think the exercise was aggrevating the residual cyst within my spinal cord. Since I have stopped exercising the cyst seems to have stopped getting larger during this last year (I would have required some form of a drainage procedure if the cyst became too much of a problem). It has taken me five years to adapt and get used to managing my residual symptoms. I now have problems with my digestive system which I believe may be due to cyst. I take ages to eat food by means of chewing and swallowing small amounts but the good news is that I have been steadily losing weight. Good luck with whatever you decide and I hope you find the answers you need. My best wishes to Sara I hope all goes well for you. If you need any support after your op I am sure Carole or Helen will put you in touch with one of us.
Message posted: 2008-10-22 11:21:48 by Sara
Hi all, was diagnosed 2 weeks ago with an ependymoma in lower spine. I've been going backwards and forwards between GP and hospital for 8 months with same problems as everyone else here seems to have - falling over, lack of balance, back pain, awful pain at night and numbness in legs and feet. I'm going in to the QE hosp in B'ham on Monday for the op to try and remove it and I'm terrified! Has anyone else been there for their op? Any recommendations on what I need to know before I go in - I know it helps when we ask the right questions! Sara
Message posted: 2008-10-22 00:59:44 by Karen
Hi All, thank you for your reply Micheala. What do you mean by, I had 'one' cell left after surgery? I have 16x6x3mm of my tumour left, my surgeon is advising me to have radiation 1 year after surgery now, due to the disabilities I have had since the op (no bowel sensation,weak bladder,limping with 80% numbness to left leg/foot & bottom) Many of the letters I have read the doctors have advised that they should have no radiation, due to the fact of more 'nerve' damage and that there's not a great success with ependymomas! I am getting pain during the night where the tumour is, probably from scar tissue and where the muscle was cut, and my left leg feels lifeless, I am going on the crosstrainer to try to maintain my circulation and fitness each day, trying to keep my weight down due to not being as active during the day like I use to be. Has anyone else had more nerve damage since radiation treatment?
Message posted: 2008-10-13 22:29:37 by Michaela Huffer
Karen, I also had an ependynoma T2 - T6 it was removed in Sept 06 apart from one cell. I had radiotherapy in Jan 07 and experienced problems during the treatment with total loss of feeling in my left leg/foot and more 'wiggly worms' (great description) this did however prove to be temporary and it took me around 6 months to recover from the radiotherapy, I was very very tired. Now I have good sensation and the 'worms' only wiggle when I am tired. Most importantly the new MRI showed the one cell had gone and my consultants say I have a very good chance that no tumours will come back. It was hard to go through so quickly after surgery but worth it for the pictures of a tumour free spine.
Message posted: 2008-10-12 14:42:26 by Alison
Hi All,
It's always so interesting to read all the issues everyone has and have a complete emphathy with you all.
I've been feeling sorry for myself since 04.09.08 (additional to all the issues since my two cervical surgeries in 2004).
Sept 4th this year started with a very sharp 'electric shock' (nerve pain) in my lower back, which caused weakness in my thighs and legs in general. Cutting a long story short it happened again three weeks later, only worse, causing me to slump to the ground in pain. I then spent 40 hrs in bed unable to move. My husband had to walk me inch by inch to the en-suite toilet, some 6 ft from my bed !! I ended up two nights in hospital with chronic pain and had MRIs via Orthapedics. I had 'shocks' getting off the MRI and again the next day after travelling back home. I'm being referred back to the neuro man to discuss my scans. I had a really bad 'shock' the other day which left me frozen in pain on the top step for 20mins. I was unable to 'blink' without awful pain. A few tablets and 20mins later my husband got me back to bed. I'm now on morphine liquid and see my neuro man next Wed.
It has been the most awful pain. It may well turn out to be an acute case of sciatica based on poor posture, lack of mobility, a reduced disc, a slight tilt to my pelvis due to muscle weakness post op, etc., etc..!! I feal awful. Not only do we suffer the tumour surgeries but it has a knock on effect to our wellbeing in many other ways. Excuse any spelling errors, etc., the morphine has me a little 'spaced out' !! I hope one day we will be able to get a small meeting of a few of us. Nothing formal, just a meeting place for coffee/sandwich and an understanding of each others issues.
Best wishes to you all
Alison
Message posted: 2008-10-06 22:39:59 by Rachel
Have a couple of grape size nodulesthat have gronw after having my ependymoma removed in Jan 07. Have 2 options - another op or stereotactic radiosurgery after y next MRI in Feb. Has anyone had this treatment? It's normally used for brain tumours.
Message posted: 2008-10-05 22:07:18 by Karen Speed
I had a ependymoma between T6 & T12 which 3/4's of it was removed on 010408. I have been advised to have radiation treatment in six months time as the balance is slow growing. Has anyone had 'more' nerve damage by having radiation, this is a real concern to me as I have 80% bowel, bottom and left leg/foot numbness with weakness, and 20% numbness to my right leg/foot due to surgery trying to remove the tumour. Has 'Radiation' made your symptoms worse?
Message posted: 2008-10-03 21:44:37 by Fiona
Hello All, I had an MRI done 4th Dec. 07 and saw Mr St George Neurosurgeon on 6th June 08, he in turn had to refer me to Miss Brown, she expressed a special interest in my condition. I was born Sept. 1954 with Spina Biffida Occulta, affecting T1 to T5 the hospital had to wait until i was 1.5 years old before operating on me. I knew growning up, i could not wear high heel shoes, as it resulted in excruciating back pain. I was 29 yeas old when my son was born, with great difficulty, i was taken to xray next day and it was discovered my pelvis is deformed, the top is smaller than the bottom. When i reached 42, i had horrendous right leg pain, kept falling over, my doc. referred me to chiropodist, who in turn referred me to prostetics, at the prostetics clinic, it was discovered that my pelvis had dipped down to the right side by approx. 3/4 inch, there is nothing that can be done about this.
The last 3 years have been horrendous, i have left leg pain from the back of my knee to my hip, feels like i'm carrying around a solid mass, this pain is 24/7 No medication helps with this pain, the only relief i get is Reiki, it helps take the edge off. It was through my persistance with my doc. that i was referred for MRI scan. Results of the scan, i have a slipped disc on my lower right side, i have 2 cysts around the T1 to T5 area, one either side of my spinal cord, both are attached to the spinal cord. The one on the left side has been there since i was in the womb, for as long as i can remember i get nerve pain under my left arm every night when trying to sleep, it lasts hours. The last 11 months or so, i have been getting steadily worse with semi numbness down my left arm and hand, my hand is very weak, tingleing is there 24/7. I have to have another MRI scan, Miss Brown wants to see a more indepth and close up scan, to see what can be done and what she is up against.
I was devestated to learn through the scan and consultation with the Neuorsurgeon, that the cysts and slipped disc are not causing the horrendous pain in my left leg ... so i am left without an answer or pain relief.
I was told by one of the doctors at the pain clinic that the cause may be comming from my pelvis and hip, as it is tilted to the right, it may be pulling on the tendons and muscles on my left leg.
I can't take cocodamol, tramadol, gabapentin, pregabalin, all these medications give me bad side affects.
Has anyone suffered from pain like this ?
I would welcome any information / remedy that anyone may have.
I know that i don't have tumour's like some people have experienced, but i am at a loss as to what do i do now.
Best Wishes to All. Fiona
Message posted: 2008-10-02 16:30:01 by Megan Davies
Hi Kerry
I know exactly what you mean by wriggly worms. I have had it before my op nearly eleven years ago and since. I will go weeks and not have any bother then suddenly it starts up again often in bed and then I have to get up and walk around for a while. Never quite sure if it's caused through the spine or not.
Take care Megan
Message posted: 2008-10-02 11:58:37 by Kerry
Hi Rebecca. No it doesnt hurts, it just feels really odd.! Crikey that must have been a nightmare having op after having baby. How are you now.? No dont live in London, not that far though, live near Knebworth.!
Message posted: 2008-10-02 10:04:06 by Rebecca
Hi Kerry, i can relate to your "wriggly worms" in your legs. I have had it now for 3 years - 1 year before surgery and 2 years after. I always explain it as crackles in my legs. It's a very odd feeling but it doesn't hurt. Is yours painful? I had an ependymoma removed from C6 - T4 in 2006 - 2 weeks after the birth of my second child. Do you live in London ?
Best wishes Rebecca
Message posted: 2008-09-30 11:21:31 by Tina Bernhardt
Has anybody had a Ketamin infusion?
The pain clinic has asked me if I would like to try it.
Just wanted to see if anybody has had one, and if yes how did they get on with it
Regards
Tina
Message posted: 2008-09-30 09:09:23 by Kerry
Hello All - has anyone experienced what I can only describe as a feeling like you have wriggly worms in your legs..!! It was very odd. I had my second op just over a year ago, but the numbness and strange feelings in my legs/foot seem to be getting worse, and not better. Am determined not to let it beat me though, just did a 10 mile walk for charity (I was very proud of myself) and am gonna apply to do the moonwalk (which is a 26 mile walk round london). Hope your all well.?
Message posted: 2008-09-25 19:34:37 by Julie
Hi, I was diagnosed with a 12/3 intradural tumor in December last year. I had an operation in April and it was a grade 1 Schwannoma. Recovered well with just some numbness in left thigh and buttock. But after about 10 weeks I started to get pain in lower back spreading to hips waking me at night. At first this was 2/3 times a week but now is every night so never get a proper nights sleep, plus some pain if I stand/walk for too long. Given that I was told the tumor was removed completely is this connected. Has anyone experienced such problems? I would be grateful for any thoughts. Regards Julie
Message posted: 2008-09-24 21:22:46 by Tina Bernhardt
Hi Jill
Thanks for replying.
Im sorry to hear that you are also having problems. Where abouts was your tumour?. Did you recover ok.
I am finding that the morphine patches help with the pain but they make me sweat a lot, but it could also be that im going through the menopause, ( I know it greats being a lady isnt it?)
Whats does upper motor Neuro Syndrome mean?. I have not heard of it.
Have your symptoms changed at all?. Some days its so bad I don't know what to do.
I did have an infusion, but it didn't do anything. They now want me to have a Ketamin infusion, not sure about that yet.
Would be nice to hear from you again.
Message posted: 2008-09-22 19:36:16 by Anne Thomas
Hi Alison and Liz, Thanks for your replies. It's great to be in touch with people in similar situations. Yes, my daughter has had a biopsy, when tumour was first found. Results inconclusive, but probably astrocytoma. Then had MR spectroscopy in the summer that confirmed astrocytoma. She's coping well with school and everyday life, but always with a limp in her leg. Of course, it's sad in so many ways, but she's such a giggly happy girl. Gives me inspiration. Been told that radiotherapy is also not an option because nerves will be damaged. Intensive physio at the moment.
Message posted: 2008-09-22 17:09:12 by Jill
Hi Tina, I have all the symptons you talk of and am also on Gabapentin and Morphine amongst others. I had my Op in 2000. The doctors also originally told me it is probably nerve damage. I have since found out it is called Upper motor Neuro Syndrome, which is nothing like motor neuro disease before you panic! As I did! Anyway, it is early days for you and some people do improve, so hang on to some hope. I am available to chat anytime.
Message posted: 2008-09-22 15:57:18 by Tina
I had an operation in December last year. It was to debulk a tumour on my spinal cord. This operation needed to be done otherwise there was a chance that I would end up losing control over my bowels,waterworks and also not being able to walk. So I went ahead and had the operation, I was in for 2 weeks and I recovered well. I still have problems with my leg, all types of pain, from burning to numbness and not been able to keep my shoes on. Somedays are so bad I just don't know what to do with myself. The consultant says there is probably nerve damage, and this could be as good as it gets!. It can also take up to 2 years to heal.
I take Gabapentin and im also on morphine patches now, the patches do help a bit.
I would like to hear from anyone who has similar problems to mine.
Message posted: 2008-09-16 21:17:15 by Liz
Dear Anne,sorry to read your message, I have been diagnosed with a pilocytic astrocytoma at C6 which is very rare in adults only seen in children. After an exploration of the tumour it was found to be infiltrating my spinal cord ,so could not be removed but a biopsey was taken. I have just had another set of MRI scans so I am now waiting to see if I need radiotherapy.I have found it very difficult so I imagine its even harder for you.I am happy to chat if it helps. kind regards, Liz
Message posted: 2008-09-16 15:24:15 by Alison
Hi Anne,
It is sad to hear of someone so young with a SCT. I know you said she has had a shunt fitted, but I take it they haven't operated on the tumour at all. Have they done a biopsy to identify that it is an astrocytoma? Mine is an ependymoma at C1-C3 that I have two surgeries for in 2004. I now have around 10% of tumour left. I know it's harder within the English NHS than when I look at the US SCT site, but I assume you've had a second opinion. Astrocytomas are harder to operate on than my tumour as they tend to infiltrate the cord more. I hope you can find some answers. Regards Alison
Message posted: 2008-09-06 21:47:39 by Anne
Hello. My nearly 7 yr old daughter has an intramedullary astrocytoma from C1-C7. It has also caused hydrocephalus. All was diagnosed 5 years ago when she started losing her balance due to the hydrocephalus. Shunt was inserted immediately and she improved and during the past 5 years has returned to "normal". However over past couple of months, she's been unable to straighten her right leg and it's now affecting her walking. She's got back pain so is now on Gabapentin. We've been told it's impossible to operate on her tumour. Anyone else had anything similar??
Message posted: 2008-08-29 16:21:04 by dee
I had a apendymoma removed from my lower spinal cord about 18 months ago. I have another one that appeared in April-not even enought time to recooperate. I met with a radiation oncologist yesterday. This is the best option for me because if they operate I will not be able to walk again. Most reasearch shows radiation works for some time but the tumor comes back in 5 to 6 years. Does anybody have any experience with this? They say my tumor is not acting like typical apendymomas and it is very aggressive.
Message posted: 2008-08-28 16:55:45 by Jackie
Hello Diane just wanted to say you are in very good hands with Mr Hamid. My husband has had two spinal surgeries performed by him for Ependymomas he is a very good surgeon. Best Wishes
Message posted: 2008-08-26 13:30:04 by Diane
Hi Alsion and Kerry, Thank you for your goods wishes. I have been to the surgeon - Mr Hamid at the QE/Prioy in Birmingham. I have a menningioma at the top of my spine. I have to go in in 2-3 weeks. The prognosis is good. Mr Hamid says he is 98% sure I will be better than I am now. i.e. no numbness in my fingers.
I'll keep you posted. Best wishes to all
Message posted: 2008-08-20 13:44:29 by Alison
Hi Angela, I had a C1-C3 laminectomy, 2 x surgery on a grade II intramedullary ependymoma and a C1-C5 fusion in 2004. I haven't had any radiation as my NS says that ependymomas don't react well enough to the radiation and that radiation can have an effect on surrounding healthy cells. I have around 5-10% of my tumour remaining at present. Radiation he says would be something to consider later on if more 'desperate' to treat any regrowth. This is my case and may well not be the case for others. An oncologist would give you the +/- benefits in much better detail. All the best.
Alison
Message posted: 2008-08-18 17:37:20 by Megan Davies
Hi Angela,
I had radio therapy on my neck after a laminectomy nearly elevan years ago without any ill effects. They do take very great care with he amount they give I was told that they know exactly how much radiation the spinal cord can take. I had twenty seven treatments in all.
Good luck Megan.
Message posted: 2008-08-18 09:58:44 by Jilly
Hi folks. Just a quick question. How many of you have muscle spasms? Do any of you have disabling ones? I've just spent 2 days laid on the floor in agony, unable to do anything. Extra baclofen than normal wasn't touching it. Anyone has a better solution? Any experience of a different drug or an injection when it gets really bad?
Thanks all, sending good vibs to you all. x
Message posted: 2008-08-17 23:26:16 by mak164
Worked for me - 49 years ago.
David.
Message posted: 2008-08-17 02:15:17 by Angela
Was wondering how risky it is to have radiation on the spinal cord after laminectomy for ependymoma removal.
Message posted: 2008-08-15 15:23:47 by Lynette Voce
Hi,I did post some messages at the beginning of the year when my hubby Brian was diagnosed with his second spinal tumour and found it so helpful. The second tumour had grown at the front of his spine c2 - c4to 3cm in just a few months - he had it removed but just got the phone call today that it has grown back - more surgery. I am really fed up as I thought he might have a couple of years at least before it showed signs of growning - Has anyone else had a spinal tumour grow this quickly - from 0 - 3cm in 9 months - Barry White is great but operations seem the only treatment. Would be glad for some feedback.
Lynette
Message posted: 2008-08-15 14:44:44 by Kerry
Well said Alison.!! Best of luck Diane, stay positive and keep us informed about what the Neurosurgeon says.
Message posted: 2008-08-14 22:32:58 by Alison
Hi Diane, This is all a big shock to you and although it's good to be informed reading stories, please remember we are all different and have different outcomes. There is lots to worry about at times but equally a lot of positive results with many of our surgeries. The best thing to do is write down questions you think of, but until you get a clear picture from the neurosurgeon, try not to speculate too much. Once you have all the fact of what you are dealing with the neurosurgeon will give you a suggested plan of action. Take care & keep us informed. Alison
Message posted: 2008-08-13 13:51:10 by diane
Hi all, I'm really not sure what I have! I went to see the neurologist last night who said I had a 'lump on/in the spinal cord'. I thought he said it was called something like mellan germa(?). But I can't find anything like that. On surfing I found this site and realise it must be medullary. He did tell me it was serious but none of the risks etc. I was taking this all in my stride until I read some of the stories. I am now waiting to hear from the neurosurgeon. At the moment I have numbness in my hand and lower arm. Will keep you posted.
Message posted: 2008-07-28 16:12:15 by Mike
Hi Sue, great news on the scan..i have been told beetroot is a good food..dont know about the taste though!! Sorry return to work is not progressing..have you tried via Job Centre Plus and access to work? take care. Mike
Message posted: 2008-07-04 21:01:11 by Sue
HI Mike. Thank you for your advice. I am sorry I have not responded sooner. I have some good news, my cyst has not grown in the last year, it must be all the natural steamed beetroot I have eaten since my Neurosurgeon suggested I live a healthy diet. I am afraid my relationship with my employers has not improved and my recent attempt to return to work as died a death. I hope your return to work works out well. You take care.
Message posted: 2008-06-22 14:18:24 by sara
To Nellie, Sue and Mike. Thanks very much for your replies - they're really helpful (Mike - if the Ambulance Service doesn't work out I think you could probably be a really good benefits adviser!). To Sue, I'm really sorry to hear about your continuing strange sensations. I lost the ability to swallow after my op but this was due to air bubble that had found its way to the brain stem during my operation. It was eventually absorbed and everything came back to normal in about 10 days. I was visited by a speech and language therapist a few times during the ten days and she was a huge help, perhaps you could ask for a referral to help you deal with this problem regardless of its cause. Thanks again to everyone. Regards Sara
Message posted: 2008-06-21 10:26:12 by Mike
Hi Sue, I have found also the wierd sensations very difficult to deal with. I find that my feet feel like blocks of ice all the time with pins and needles..the only relief from this is to do something that distracts me from them or a good foot rub. I do have muscle stiffness and spasams too (all part of the spasticity caused by the damage to the cord)It is increased tone in the muscles that triggers my spasams so standing & stretching helps to reduce it. I go to the gym and use the hydro pool on a regular basis. Have you spoke to your gp about the difficulty in swallowing..I have a close friend who has a reflux problem (gets worse with stress) It may be unrelated to your tumour? My tumour is T9-T11 (astrocytoma)and cystic also. I do have a sluggish digestive system..found that good diet helps (since the op I dont like brown sauce anymore!?)I was very active before my op and the reduced function since has left me very frustrated but determined to make the most of things. With your work issues, have you had a review with an Occupational Therapist? With any disability, your employer must make resonable adjustment to accomodate your needs. I live in Chester and I am thankful for this web site and message board..otherwise I wouldnt have known anyone else with this condition and had the opportunity to chat about it. Take Care, Mike
Message posted: 2008-06-20 21:59:20 by Sue
Hi Mike.
I have read your messages on the board and have been impressed with your advice on what benefits etc. may be available to those of us suffering with certain disabilities. I personally am struggling with some weird sensations recently and don't know who to discuss these with. This morning I took my partner to work and then went to get a few groceries on the way home. I was waiting at traffic lights when suddenly I found I could not swallow, panic almost set in whereby I thought, do I jump out of the car and ask someone for a drink of water or do I just sit here and die. This has not been the first time this has happened to me. I managed to gain control of my situation and the lights changed and I was able to carry on. My Neurosurgeon has told me that subtle changes within my spinal cord cyst may be the cause of these symptoms but how can I be sure that this is the cause? I find these symptoms quite scarey at times and wish we were able to have more knowledge of our rare condition. Take care.
Message posted: 2008-06-19 18:29:56 by Mike
Hi Sara, Ive started a return to work program with my employer..I work for the Ambulance Service and the operation in October 07 left me unable to do my current job. I was keen to get back but the works doctor told me to take things slowly..he was spot on. After my first half day back i spent the afternoon fast asleep not knowing what had hit me. Im slowly building up my hours and I have to say my employer has been very supportive. You can get support to return to work through the Job Centre Plus..its called access to work. They provide equipment..specialist wheelchairs..adapations..and even a carer if your condition needs it. They will also help fund transport costs to and from your place of employment. I applied to them when I was at the Midlans Centre for my rehab with the help of the OT. I get help with taxis to work and they have provided a lightweight wheel chair also. You may be entitled to DLA Disability Living Allowance(non means tested). I would suggest you get DIAL or a similar organisation to help you fill out the forms. If you need to use a wheelchair or have adapted a room for your use at home you may also qualify for a reduction in Council Tax. If your in receipt of the higher rate of mobility allowance you can get your car tax free..you can also apply for a blue badge and a free bus pass..thats all i can think of at the moment!! Best wishes to you all. Mike
Message posted: 2008-06-19 10:13:42 by Sue
Hi Sara.
Nellie is totally right in what she has said. I returned to work within 12 weeks of my major op, I still had no proper control over my bowell and bladder problems and as a result of the op my histamine levels went out of control. I started having allergic reactions to simple things such as putting sauce on my bacon butties. These reactions were so bad at times I had to strip off and splash myself with cold water, this was something I couldn't do at work. The pain and stress of it all caused me to go off sick again. My attempts to try and work had been without professional rehabilitation reviews and as Nellie said people do expect you to carry on as normal but in a lot of our cases this is just not possible. I only receive Incapacity Benefit and that does not even cover my mortgage but I am fortunate to have a supportive partner. I wish you well and do make sure that your employers are doing everything for you that are bound to do. Good Luck.
Message posted: 2008-06-18 21:58:09 by Nellie
Sara, I was off work for five months post op, my employers were very good but on reflection I pushed myself too hard and realised afterwards that I could have asked to be considered for half days or work part week for a month to ease back into the work pattern. I found that once you go back full time people quickly expect you to be fully fit and don't realise the struggle involved in coping with pain and mobility in trying to work a full day. All the best, Nellie
Message posted: 2008-06-18 14:50:09 by sara
Hi everyone, I had a tumour removed 18 months ago, I had 5 months off work and then returned to an office based desk job. My employers have been extremely understanding and accommodated my needs but I still find it really hard to cope with working and have to take alot of painkillers just to be able to get up and about. Has anyone else returned to work, if you haven't have you been able to claim any benefits etc..? Grateful for any replies/advice
Message posted: 2008-06-16 22:16:07 by Mike
Hi Viv, I had an operation to debulk a tumour in October last year. I really do know how you feel when you said you feel so alone. I have found it very difficult coming to terms with the damage caused by this rare condition. I do hope you get the support you need from your doctor and surgeon. Keep on pushing and never give in. I live in Chester and happy to chat whenever you need. Mike
Message posted: 2008-06-16 17:16:14 by Megan
Hi Viv, I had a tumour removed from my spinal cord in my neck 10.5 years ago. I know how alone you feel I live in north east Wales. Any time you feel like a chat I am here. Take care, Megan.
Message posted: 2008-06-16 15:51:52 by viv
15 weeks since i had an apendymoma removed from my spinal canal L1-L3 waited 5 months for my op whilst pain and lack of sleep became agony. i take tramadol and pregabalin for the pain my GP has never heard of my illness and still has had no communication from the hospital apart from discharge letter. my neurosurgeon is to busy to full in my insurance claim report and has refered it to my GP who has not got a clue about it. Im so frustrated this website is great atlast im not alone i live in the northeast of england would like to be able to chat with someone anyone All the best to all of you. viv (aged 53)
Message posted: 2008-05-11 15:37:18 by Sue
Hi Louise. I am now almost 5 years post op and my nerve damage affects my S1. My tumour was sited at L4-T11. It is very early days for you and your nerve damage may improve. We all vary so much with our condition and I think it is all about how we learn to manage our health issues. I personally have only recently come to terms with my condition and now function quite well within my home surroundings. I am told and know that I will never be able to return to my full-time occupation but I live in hope that I may be able to find something I can do in the future. Try to stay positive and adjust to your new sensations.
Message posted: 2008-05-11 14:51:23 by louise
hi, my tumour is l5 s1, it keeps growing back at fast rate. thanks for advice
Message posted: 2008-05-10 22:59:08 by Sue
Alison.
Thank you for your reply. I must admit there are times when I think I am going out of my own mind because of the problems I have recently experienced with eating meals. I and my partner see friends once every two weeks and tonight I had to leave the table as my food was not going down my gullet. This is so embarrassing but I have learned not to go into panic mode, as I have learned this will only make things worse.
I do feel like a freak at times,but my close friends and family do understand my health issues and supoport me where possible.
Message posted: 2008-05-09 22:21:17 by Alison
Hi Sue, I've also heard of many of our US sufferers complaining of digestive issues associated with our surgeries. I suppose the main thing to consider is that all functions in the body, including the stomach to the bowel (above and beyond) are operated by nerves steming from the spinal cord. Any damage plays it's part in stopping things from working as effectively as it should. My system is very sluggish which I put down to meds, nerve irritation/damage and general lack of exercise post op. There are natural remedies out there to assist, but they can also cause bloating at times, which doesn't make you feel too good. For someone who had no stomach concerns pre-op, I am the complete opposite now, albeit I'm still in control which has to be a blessing. Good luck with your appointment.
Message posted: 2008-05-09 20:11:46 by Sue
Hi Alison.
I have just read your posted message and I am very interseted in your response regarding digestive problems. For some time now I have been asking for some answers to the problems I have been experiencing during the last nine months. Would you please explain in more detail what problems you have encountered with regard to eating and the type of pain you associate with this condition. I see my Neurosurgeon next Tuesday and I really would appreciate other fellow sufferers of our rare condition to give me some feedback on how they perceive their condition in connection to their spinal condition. I desperately would welcome some answers as I believe we lack professional guidance regarding our pain and debilitating condition.
Message posted: 2008-05-09 08:48:03 by Alison
Hi Louise - It's a shame you have had to have a second op. I had two ops but only 4.5 months apart (18hrs in total). I was pleased to not suffer any major bowel or bladder issues as such, apart from a slower/lazy digestive system and frustrating constipation from meds, etc.. It's not uncommon to suffer though, so I suppose the consultant can advise you on what to expect in recovery, based on the level of the spine you had operated on. As for the burning sensations, I still have chronic burning/itching 3.5 years after my last op. For me the nerves damaged in my neck affect my arms (left worse than right) and I think this will be everlasting I'm afraid. I take Lyric/Pregabalin to help with this. It's still early days for you and they say the first 2 years after surgery can see improvements along the way. Take care
Message posted: 2008-05-08 20:37:21 by Rachel
Hi Louise, I was just wondering what op you had & why you had to have a second one? Did your tumour grow back or did you have residual tumour? I had my op a year ago & recent scan shows seeded components, so am worried I may have to have another op!
Message posted: 2008-05-08 18:41:14 by louise
hi, i am 2weeks 3 days post op and i am having bladder and bowel problem and also weird burning sensations in right leg and buttocks area and surrounding area and pevlic this is my second op in five years, my first op i had nothing like this, has anyone had this problem and do it go away
Message posted: 2008-05-03 19:12:57 by Alison
Hi Meiner, I am 3.5 years out of my 2nd op on the cervical spine. I have residual tumour left and a fusion of C1-C5. To this day I still get awful pains around my surgery site, when I feel as if my bones and the back of my head are on fire. It can feel so inflamed. I also get awful nerve pains up and down my arms, especially my left arm. My residual tumour is monitored for regrowth. I fine Lyrica better than Gabapentin, so maybe you could ask your doctor about that drug. It is all very unfortunate, but I think these surgeries leave us with lasting reminders of how complex our conditions are. I hope you find something to help you cope with the pains.
Message posted: 2008-04-23 21:33:34 by Sue
Hello again Meinir. Some of my tumour was in my T section and a cyst extended up to T6. My op was in 2003 and my back pain gets worse when I try to do too much. I have recently had problems eating and I am convinced this is caused by the muscles going into spasm either side of my abdomen. I have always got a moderate pain over the operated area of my back and when I do too much around the house the pain takes on a severe burnig sensation which radiates around my ribcage. I have to lie down until it eases. I find that breathing in so that my abdomen pushes out helps with the muscle spasm. I get scared sometimes because it feels as though my digestive system is shuting down. I see my Neurosurgeon on May 13th to discuss whether it is my residual cyst, which has increased during the last two years, causing me these problems. I find it hard to explain my symptoms to my GP because he does not understand how my residual tumour and cyst at the base of my spine would cause these upper abdominal pains, he thought it may be indigestion, I don't. I would gladly speak with you if you wish because you are the only person that I can relate very similar symptoms with. Perhaps Carole or Helen will pass on our details to each other if you are willing. Take care. I hope we find some answers to our problems soon.
Message posted: 2008-04-23 10:17:03 by Meinir
I had a thoracic meningioma removed in Feb 2007 - scan shows that most of tumour is still there as it was very difficult to remove. I'm now suffering from increased back pain which is really intense almost like as though 'm burning from the inside of my spine together with nerve pain almost like realy bad flu skin accross my left side + intense spasms that make ou wince in pain. Is anyone else feeling pain like this and has anyone's tumour regrown and caused more problems such as repeat surgery . I take Tramadol to control the pain as gabapentin did nothig for me.
Hope to hear from someone
Message posted: 2008-04-17 15:54:03 by Megan Davies
Hi Alison, I asked the physiotherapist this morning if she knew anything about ENM but she had never heard about it. I am going to ask my doctor about the pian management clinic as I have never been refered there although there may not be one in our area. I did get some information off the net. Its good to get tips off other people it all helps. Take care Megan.
Message posted: 2008-04-16 17:51:42 by Alison Bradish
Megan - 10.5 years!! It's awful to be in pain. Mine seems to get worse at times and hasn't been too great over the winter months. Perhaps a bit of sunshine might ease the bones. My fusion has slipped forward since it was done & I have cord tethering at the surgery site. It all feels so tight and stretched in that area. It's like having one of those 'bulldog clips' permanently on my neck. Also walking is like treding water and my thigh muscles ache. Take care - Alison
Message posted: 2008-04-16 17:10:08 by Megan Davies
Hi Alison, Thanks for your advise I will certainly look into the ENM device. I had my op 10.5 years ago and they think they removed all of the tumour. I have M.R.I.scans every two years now and they appear to be the same. they can't tell for sure if it's scar tissue or tumour that shows. I have had pain and burning tingling sensations e since before the op but lately they are worse. I am trying physio at the moment not that it helps but they hope to stop the curvature of my neck from worsening. Take care Megan
Message posted: 2008-04-16 15:19:41 by Alison Bradish
Megan - ENM link, but I got mine free off the pain management clinic
http://www.remediuk.com/index2.html
Message posted: 2008-04-16 15:17:25 by Alison Bradish
Hi Megan - I had 90% of tumour removed from C1-C3 and a C1-C5 fusion. I had about 9 sessions of Acupuncture. I have to say that it didn't work for me. Please don't assume that it doesn't work for some suffers as I'm sure it must. The main thing I found is that if anything it made things worse. The pins go into sensory points around the body. It seemed to heighten my nerve sensitivity as if aggrevating it more. Each session seemed to get worse so I had to call it a day. I now use an ENM (together with pills !!) off the pain management clinic. I find this does give some relief, but initially it takes a few weeks to educate the nerves to respond to it. Having said this I am 3.5 years post op and to this day I have not had anything near complete relief from the nerve problems. I'm of the belief that I'm stuck with it and just have to try to tollerate it as best I can. I'll put a link to the product on a post directly after this. Everyone is different so please keep trying all you can to get relief. Alison
Message posted: 2008-04-10 15:28:01 by Megan Davies
Hi. Has anyone who had a tumour in their neck removed ever tried accapunture to relieve pain and tingling,burning sensations. After hearing a program about accapuncture on the television I wonder whether it would be of any benefit. I would be gratefull for any comments.
Message posted: 2008-04-06 09:15:40 by Sue
Hi sara. I had a very thin tube coming from my spinal cord for about two days after my op. I remember being told to pant whilst the nurse removed the tube, it was a very weird sensation. I was then transfered from Frenchay to the Glen near Clifton. The tiny hole left from where the tube was taken out must of been leaking and a nurse pressed a small cup near the hole and squeezed out some fluid. My Neurosurgeon was told about this incident and he placed a steri strip over the hole and it healed after that. I never saw that nurse again on my ward, I think she had a good telling off. I still have fluid building up above the residual tumour at the base of my spine. I have been told I will need to have it drained at some point. I hope your son's problems settle down soon.
Message posted: 2008-04-05 17:01:13 by sara
Hi everyone
Has anyone else had a spinal leak. My son had neck/head pain and vomitting after surgery. Have just found out that there is fluid round the operation site. Surgeon says it is common .Sara
Message posted: 2008-04-02 16:39:42 by Linda
Thanks Sue,Sara and Mike for your advice.It is much appreciated.
Message posted: 2008-03-29 14:52:41 by sara
Dear Linda
My son has had two spinal tumors at age 12 and 16. He has had 4 months of chemo and radiotherapy. He wanted to go to the States, No one would insure us so some one suggested the Post Office. They agreed.It was a very reasonable price (just over £100)considering. We went to Hollywood L.A. and it was amazing to see him happy away from hospitals etc. I wish you and your daughter well. We understand what you are going through. Good Luck
Sara
Message posted: 2008-03-29 14:45:16 by sara
Dear Megan
Thanks for your message. The vomitting seems to have subsided but he is still getting some strange sensations in the face neck and head. He is a little better though i think. Will be seeing surgeon next week.
Sara
Message posted: 2008-03-28 21:43:38 by Sue
Hi Linda. My opinion is why do we pay insurers rediculous sums of money when it at the end of the day they will do all in their power not to pay out. I personally have informed my travel insurance of my condition, knowing that it would NOT interfere with my state of health during a two or three week period away from home. I trust my Neurosurgeon and would not want to have anyone else involved in my current condition. I have travelled abroad knowing that at the end of the day I would only wish to be dealt with by my own Neurosurgeon, that will happen on my return home to this country. As long as you tell the insurers of the medical condition knowing it will not effect your short term holiday, then all should be fine, as long as your medical people support this. I hope this makes sense.
Message posted: 2008-03-28 18:59:42 by Mike
Hi Linda. I have recently had surgery for a pilocytic astrocytoma (october 2007)Im a little older (38 when diagnosed) Ive not had any radio or chemo as surgeon said they just wanted to monitor the tumour. I know its a hard road to travel and im glad to hear your daughter is doing well. I have had some silly quotes for travel insurance but would suggest you try a company called Medici travel (www.medicitravel.com)Hope this helps. Mike
Message posted: 2008-03-27 10:18:31 by linda
My daughter was diagnosed with grade 1 pilocytic astrocytoma C1-C3 in April 2005 (then 12 years old).It has been a long hard road of three surgeries and a year of chemo. She is well now.We are thinking of holidaying in florida. Any advice for or against or re insurance would be welcome THANKS BEST WISHES TO ALL
Message posted: 2008-03-26 21:37:13 by Rachel
Hi Louise. I too have pains when I open my bowels - though mainly in my bum cheeck where my nerve damage is. It doesn't last for long, but is a strange feeling.
I've just found out that , although they thought all my ependymoma had been removed, it seems there are 'seeded components of tumour' - 2 small nodules - left in the spine. Has anyone heard of this?
Message posted: 2008-03-26 11:12:33 by louise
hi sue, thanks for letting me know, i've tried my gp but he cant give for it,i've not had the op yet,
Message posted: 2008-03-24 08:30:19 by Sue
Hi Louise. I am sorry to hear you are still suffering. I have experienced the pain you have and I believe it is caused from the pressure building up on the nerves at the base of the spinal cord. Since my op almost five years ago I have lost some feeling in that area and down my left leg and foot. Did you have your other op in January or are they still messing you about?
Message posted: 2008-03-23 13:40:08 by louise
hi, i have been having pains down my legs every time i open my bowels, i have an ongoing back problem have anyone else had this problem
Message posted: 2008-03-19 17:42:01 by Megan Davies
Hi sara, I had a tumour removed from my neck ten years ago and suffer pain in my neck, shoulders and arms with tingling in my left hand caused by damageged nerves before the op. I was told it could not be reversed and take pain killers I hope your son has a good outcome. Megan
Message posted: 2008-03-15 19:33:18 by sara
Many thanks to Alison and Sue for your replies. My son is still having head and neck pain and is on painkillers. Going to see a Neurologist soon to see if anything else could be causing it. Great to hear from you both and i wish you all the best. Thankyou.
Sara
Message posted: 2008-03-15 09:42:49 by Alison
Hi Sara, I would have thought that a trapped nerve would be possible to detect under mri. I would imagine that if they can see reduced disc spaces that this may lead to a trapped nerve occuring. I am 3.5 years post second op on my neck and I still suffer 'nasty' pains in my neck, shoulders and arms. As they had to open the cord to remove as much tumour as they could, I have some nerve damage rather than trapped nerves. I hope you can find some answers. Regards Alison
Message posted: 2008-03-08 14:31:25 by Sue
Hi Sara. I am sorry to hear of your son's pain. Many years ago I suffered very bad neck pain and needed to have two or three of my cervical vertebrae manipulated back into position. Shortly after this I started to suffer lower back pain and was diagnosed some ten years later with an Ependymoma at L4 through to T11. My residual tumour remains sited at L4 and after one of my full MRI scans it was noted that the scan had revealed something still wrong with my neck and that it showed no trapped nerves. Based on that report I would say that MRI scans would reveal trapped/damaged nerves in the spinal cord. I hope your son manages to get some relief from his pain soon and it certainly would not hurt to get a second opinion on his current condition. How old is your son?
Message posted: 2008-03-06 21:18:35 by sara
My son has had 2 ependymoma spinal tumours. Last surgery was in the neck. He has strugggled to recover his health. Has pain in neck and shoulders and jaw. He cannot get comfortable. Admitted to hospital after surgery with vomiting and head and neck pain but scans clear so dischareged. Things got bad 3 months after surgery. Anyone else had this Would a trapped nerve show on a mri scan?
Message posted: 2008-03-05 20:31:54 by Kelly
Hi All, I would like to thank Sara, Sue and Mike for their replies to my message concerning my Mum and her symptoms since the op. I have just got off the phone with her after reading out your replies and she is so happy to know she is not alone. Sara with reference to your very kind offer to be able to get in touch with my Mum directly (her name is Brenda by the way) I have e mail Carol and Helen who run the forum with a view to them passing my e mail to you and if this is successful I shall get Mum sorted with one or you can exchange numbers whichever is your preference. I'm sure you will all hear from my Mum soon (well as soon as it takes for me to explain to her how to use my Dads laptop!) Thanks again to you all talk soon
Message posted: 2008-03-05 19:54:12 by Mike
Hi Kelly, I suffered a little hair loss after my op. My hair started to think quite rapidly and I was considering buying a wolley hat to compensate when it started to thicken up again. I had my op in September 07 and I have numbness and some paralysis in my left leg and numbness in my right leg and bottom. I have urgency going the loo. I find stretching helps with the spasams but im told the numbness can recide over time. My thoughts are with you all.
Message posted: 2008-03-05 16:32:32 by sara
Hi Kelly. Your mum's symptoms are exactly the same as mine so we must have had similar ops. I had a tumour removed in Nov 06 so am a year further on than your mum but I can remember what it was like. I suffered from extreme tightness in my chest and have recently found that this has been eased by increasing my dose of Gabapentin. I have also found that stretching exercises, massage and acupuncture have helped (all supervised by my physio). Loads of my hair fell out about 3 months after my op. It's called telogen effluvium and is really common after major surgery. It has since all grown back though. I had my hair cut shorter than normal to help the new growth catch-up! Please tell your mum that loads of her symptoms will get better, she just may not notice it day to day. Some probably won't improve hugely but there are ways of coping with them and your mum sounds the type who will cope brilliantly. I don't know if there is a way to do this via the board but if your mum would like to contact me directly I'd be really happy to hear from her.
Message posted: 2008-03-05 11:31:24 by Sue
Hi Kelly. My best wishes to your mum. I have the same residual symptoms and yet we all vary, some have been able to carry on with their normal lives and some of us have had our lives turned upside down. I think a lot has to do with how badly the tumour has damaged the nerves prior to the op and whether the tumour was totally removed. It sounds like your mum is making good progress tell her it takes time and she will learn to cope with her 'new' body functions. Feel free to ask anything. Best wishes.
Message posted: 2008-03-04 21:20:23 by Kelly
Hello everyone, I was so pleased to discover this website. My Mum had asked me if it was possible to find her some means of communicating with people who had had the same condition as her,as over time she has started to feel quite isolated and as if she is alone her situation. Mum had a spinal cord tumour removed from the thorasic region of her spine in October 2007, apparently it must have been there years but had only started to affect her when it got big enough to press on the nerves and eventually she was completely unable to walk.At this point she was then given the op to remove it which fortunately was successful and shes been so brave and my Dad and I are so proud of her. Any way my reason in posting this messgae is in the hope that someone can reassure her that the way her body is now is completely normal. I have read alot of the messages out to Mum which have made her feel much better but she would like a reply to her personal symptoms. Mum suffers with numbness in her legs particularly the left, also numbness in her bladder and bowel which mean she often doesnt realise she needs the loo until just before it happens (no accidents though). Also she gets spasms in her back and feels a tightness across her chest and back. I'm sure I've missed something but that will do for now! Oh and also has anyone experiencehairloss since their op? The tumour was benign so hairloss not due to chemo or radiotherapy. I hope to hear from someone soon. Thanks for the opportunity to contact people in the know. best wishes K
Message posted: 2008-02-29 17:21:24 by Megan
Hi Nellie & Alison, It's good to speak to someone who has had a similar thing, other people just don't understand the problems. I have terrible pain in my both arms and neck but my left is worse. Some times I have trouble keeping my legs and feet still it's just like worms wriggling around in them but thankfully it doesnt last too long at a time. Good luck to you both Megan
Message posted: 2008-02-28 18:52:30 by Nellie
Hi Alison, I agree with what you say about others being unaware of the constant pain and strange sensations. My tumour was in the same area as yours and I know you will recognise that when you get the burning sensations in the neck they can also feel odd - almost a numb coldness at the same time. I mentioned this to my doctor once and he said it is hard for GPs to understand all these sensations as they will rarely see patients with these ongoing problems. It is good to hear from you and Megan.
Message posted: 2008-02-27 13:48:48 by Alison
Hi Megan & Nellie - I can understand everything you say. I am really struggling with my neck. My surgery was in 2004 and I have a C1-C5 fusion, with residual tumour. Last week I had (what I've had several times before)the most awful burning inflammation throughout the bad of my neck, head and shoulders. It felt like fire, so hot, and the deep rooted nerve itching made me feel like my blood was boiling and my skin crawling. It really is unpleasant. I suffer all the time, but get these flare ups also. I have the most trouble with my left hand and arm and too have wasting. My right is better (I'm right handed - so good) but it's not as good as it was post-op. Others just can't comprehend how it feels when they look at you. It's all just a pain !!
Message posted: 2008-02-26 16:12:41 by Megan Davies
Hi Nellie, I am lucky its my left hand and arm that is damaged and I am right handed. Are you affected in any other way I have problems with my neck and holding my head up. I am starting physio tommorrow so heres hoping. I had my op in the old walton centre but now attend the new one every two years. Good luck in March with the consultation. Megan
Message posted: 2008-02-25 07:34:34 by Nellie
Hi Megan. Good to get a response. I can relate to all you say especially the clumsiness. I find anything that requires dexerity very difficult. Because of over use of my left hand (I am right handed and it is my right hand that is damaged) I have an appointment with a consultant in March to carry out tests on my left hand which is suffering pain in the wrist area and the hand is changing shape with muscle wastage. Like you I do find ways around most tasks. You need a strong character to keep you going! Nellie
Message posted: 2008-02-24 16:33:25 by megan
Hi Nellie, I had a benign tumour removed from my neck ten years ago and it left me with tingling and burning some pain in my left arm and hand. also I find it difficult to fasten buttons and do fiddly jobs such as peeling veg and I can't always feel when holding things and am inclined to drop them. But I find ways to get rond them and keep taking the pain killers. Good Luck megan
Message posted: 2008-02-18 00:22:03 by mak164
Hi Saira -
Tell your sister that her symptoms are common post-surgery, and nine weeks is no time at all to assess progress. It's 50 years this year since my SCT erupted, but post-surgery I had 'electric' shooting pains episodically, which disappeared after a couple of years. The numbness and some leg weakness persisted, but I managed to live with them and have a full and active life. The urinary symptoms did become a problem after a number of years, and she needs to have these monitored by a urologist, but again I was able to cope with them.
It would help her if she could access this forum herself and discuss her problems with people who have been down the same road.
Message posted: 2008-02-16 21:59:39 by Sue
Hi Jilly. I had Mr Richard Nelson, he and his team did a very good job, given the circumstances. I have not been able to return to work in my insured position in a full time managerial position and yet I have found myself being accused of all kind of things by insurers and my employers. My Neurosurgeon maintains I have a serious medical condition and yet the insurers insist they are pleased that my medical condition has not recurred. Who are you supposed to believe? What medical back ground do these pen pushing insurers have?
Message posted: 2008-02-16 17:19:18 by Jilly
Saira and Sue, my tumour was Lumber also, I also went into theatre with backache and came out with the same problems as you Sue and pretty much identical to your sister Saira. I am now nearly 8 years post op and have made little progress. I really do think things depend on the individual Saira, it's a case of nobody knows. I do hope you sister improves and if not, then she comes to terms and learns to live with her symptons, there are many ways she can be helped with these to make her life easier. Sue - I also had my op at Frenchay, may I ask who did your op? Professor Coakham?
Message posted: 2008-02-16 09:28:25 by Sue
Hi Saira
My best wishes to your sister. My tumour was T11 to L4 so I understand totally what your sister is suffering. I have residual tumour and cyst which was unoperable due to the fact that my tumour was not diagnosed for ten years, I too suffered extreme pain both day and night. I too get very depressed at times with my residual symptoms and feel angry when people refer to my problems as constipation as I know that my problems are due to nerve damage and a dysfunction of my sphincters. I am almost five years post op and once I got the message across to my GP that I was not suffering from constipation as such, I was then referred to a 'well woman' specialist physiotherapist. There are exercises you can do which will help strengthen the sphincters and help you understand your new bodily functions. I still have no feeling to the left side of my buttock, between my legs and outside left leg and foot. Your sister must be patient and in time will learn to manage her problems, but I would sincerely recommend that your sister asks about this kind of physio because it will benefit her. I wish her a speedy recovery. I had my op at Frenchay, Bristol. Does your sister have any remaining tumour? I have just read your message again and I think your sister should be referred to an Urologist, this was what my Neurosugeon did for me, I was catheterised for at least nine weeks after my op and then checked out by an Urologist until he was happy with my flow of urine. Please get your sister some help soon. You both take care.
Message posted: 2008-02-15 23:09:21 by Rachel
Hi Saira, please tell your sister not to be depressed! I had a L5-L6 Laminectomy a year ago to remove an ependymoma & everything is so much better than it was a year ago. I do get constipated & pain where I have nerve damage (in my bum cheek!) when I go to the loo, but it's not too bad. I never thought I'd be able to run again & I can now! Apart from aching in my bum cheek & foot where I have nerve damage, when I'm on my feet a lot, everything is really good. I just had my 5th MRI this week, 1 year post op and am waiting for the result!
Message posted: 2008-02-15 20:16:20 by Rebecca
Hi Saira. your sister's symptoms are similar to mine re consipation etc. I saw really great consultant who specialised in that area who my nuerosurgeon recomended and now I am completly back to normal (my ependymoma was C6 to T4). let me know if you want me to recomend him. By the way I live in London and I was 36 when I had my opperation. Rebecca x
Message posted: 2008-02-15 13:45:05 by Saira
Hi Good luck for every one.My sister is 9 week post op after L1 to L5 ependymoma removal.She just had back ache for 11 years.But now she has to strain a lot to urinate and she is sevely constipated.she has pain in her left toes that goes to her back.Her hip is numb...did any one have these symptoms post surgry...Do they ever get better how much and how long does it take?please tell me since she is extremely depressed.
Message posted: 2008-02-14 00:31:34 by mak164
Hi Mike -
I was still at school when my tumour started, but I went on to have a career in the NHS afterwards. Hope you have the same good fortune.
Message posted: 2008-02-12 22:12:00 by Mike
Hi Mak & Paul. I had my op at walton Neuro late last year. Was down to goto Clatterbridge for rehab but I went to the Midlands Centre for Spinal Injuries as no beds. Back at home in Chester now walking but only short distances on crutches and hoping to get back to work (NHS) soon. Mike
Message posted: 2008-02-11 23:39:09 by mak164
Hi Paul -
I had my operation in Walton Hospital (S Ward was the neurological ward then, back in 1958) and radiotherapy at Clatterbridge. Like you I made a good recovery, but I was fortunate in that I didn't have a recurrence of the tumour.
Message posted: 2008-02-11 14:23:16 by Paul
Hi i came across this website some time ago but only just seen the messageboard. I was diagnosed with an intramedullary astrocytoma between C4 and C6 back in 1990 when i was 17. After the surgery it took me 6 months to walk again unaided again but basically i went back to a normal way of life. Unfortunately i suffered a reoccurence in 2001 and was operated on again at the Walton Centre in Liverpool followed by 6 weeks of radiotherapy. Whatever the reason i have never fully recovered like i did last time and i cant walk without crutches or stick etc and my legs arent that strong. I suffer some nerve pain but usually control this with amitriptyline and lyrica(pregabalin)My last scan in 2007 showed no tumour reoccurence and i still feel i make progress even after such a long time. I work and own my own flat and go out socialising but cant drink and go on pub crawls like i used to!!. Yes its scary,fustrating and hard going and people dont always realise this. However i feel even after this time its possible to make progress. Its something very rare but i like to think its something that happened to show i dont give up easily! Good luck to everyone.
Message posted: 2008-02-06 18:04:50 by Alison
Hi Sue - Thanks for your message. I have got a couple of soft collars, but they always discourage you from using them as they say it weakens the muscles. Having said that I have given in on the odd occasion. When I put my head on the pillow at night it is pure relief !!
Message posted: 2008-02-05 01:42:54 by John
Graeme
My case is very different as I have had my surgery (in Canada).
I am at week 8 post operation and spending 3 hours a day in the gym following my therapy plan and hoping to get back on the big slopes at Whistler again someday. First I will need to be able to walk a mile pain free))))
For Cyber knife look at http://www.cyberknifesupport.org/about_the_doctors.html
Stanford University seems to really lead the word here
Good luck
Message posted: 2008-02-04 18:36:13 by Graeme
Mike.. I couldn't tell you whether they are the same or not.. they defo sound similar! - I too have one leg with super human strenght and one normal.. no sensory feeling in the right leg.. insurance wise 'the insurance surgery .com ' have been helpful.. ive had some odd insurances needed and theyve been very friendly.. biggest thing is the amount of forms you have to fill in.. I have to say I have just bought high street insurance and taken a gamble several times tho.
I wish i could find out more about the novalis/cyberknife stuff but there is not much out there with regard to our conditions.. Anybody else go to charing cross hospital?
Message posted: 2008-02-04 11:19:26 by Sue
Hi Alison. I have always described my residual symptoms as being made worse by gravity,though it is my lower body functions that are the most debilitating. The upper abdominal and back pain I suffer very often feels as though something is pushing me forward and down at the same time. Has anyone suggested you wear a neck brace to support your head when you need to be up and about? I hope you find some sort of relief or a way to manage your problem.
Message posted: 2008-02-03 20:52:23 by Mike
Hi Graeme, sounds like youve got a similar tumour to mine. I have a intramedullery pilocystic astrocytoma at T9-T11 level. You have continued to snowboard...how have you got on with travel insurance? Im only a few months post op and having probs getting a decent quote (was quoted £7000 by one firm for a two week holiday in the states) I understand the new treatment the radiotherapy is matched to the shape of your tumour and this directs the treatment where it is needed..only seen it offered in the states! Mike
Message posted: 2008-02-03 19:49:14 by Alison
Hi. Does anyone else suffer with gravity problems!! I had 2 ops in 2004 for a C1-C3 intramedullary ependymoma. I ended up with a C1-C5 fusion in the 2nd op that just about got my neck in to a vertical position. I'd pretty much lost the backward curvature pre diagnosis. As time has progressed the five joint fusion has ended up a bit like the leaning tower of pisa and is falling forwards in a straight block. My neck feels like it is forever fighting to keep my head upright as the load on the neck is badly distributed. The pain and tiredness from it all, let alone the look of it gets me down. Does anyone else suffer like this from cervical surgery?
Message posted: 2008-02-03 19:29:19 by Graeme
Hi Again guys. I have a intramedullery astrocytoma, in the upper thorasic part of my spinal cord, on the 'lung side' not the 'back side'. Im sure i havent spelt that right but basically its a malignanant very slow growing tumor. As you guys have said they could not remove all of it, in my case its very difficult to get to (effectively the surgeon works blind?).
For me the last five years or so have been excellent.. I have kept snowboarding ect .. its only lately that i am having much more pain again ect.. hence i am looking for advice again ect!
I have asked about this type of treament (there are other names - cyberknife..) but my surgeon shrugged it of as i would need too much radiation.. however im now wondering whether its feasible as 'maintenance' not a cure.. if i have to fly to the states once a year i will!, but wondered if anybody else had feelings knowledge about it - its obviously very new?
Message posted: 2008-02-03 09:32:15 by Sue
Hi Graeme. I'm afraid I have not heard of this form of treatment before. There are a few of us on this site that have residual tumours which could not be totally got rid of due to the risks involved. I see my Neurosurgeon in a few months time and I shall certainly ask him about the form of treatment you mention. What kind of tumour do you have and where was or is it in the spinal cord?
Message posted: 2008-02-02 21:36:28 by Mike
Hi graeme, Its good to hear from you. Ive just had a de-baulking of a tumour in October last year. Im 38 years old and thought my problem was due to work (working for ambulance service). How have you got on since your op..I had mine in Liverpool and finding the post op neuropathy hard to get used to. Learning to walk again (on crutches) Balance is poor..it feels like a had a few pints of stella. Looking to get back into sport and have joined a local wheelchair basketball team. Mike
Message posted: 2008-02-02 17:06:16 by Graeme
Hi guys have only just stumbled on this forum.. some interesting comments on here..
I had a de-baulking of my tumor in 2001, aged 25. thought id injured myself snowboarding then they found something and here we are..
Has anybody asked there GP about the novalis shaped beam surgery? Ive been told its no go for me.. but something is niggling my brain all the time that it might be beneficial if not a cure?!
anybody know anything?!
Message posted: 2008-02-01 20:51:13 by Sue
Hi Megan.
I am sorry to hear about the difficulties you have experienced with your spinal tumour. I must disagree with your comment about our problems being common as I was told by my GP that only 50 cases were diagnosed each year in the UK. I myself am only five years since my diagnosis and I am still suffering from residual symptoms which affect my everyday life. I am still having MRI scans on an annual basis because the cyst above my residual tumour is increasing in size. I wish you well with your problems.
Message posted: 2008-01-28 17:35:46 by Megan Davies
I had a tumour removed from my neck ten years ago it was growing in my spinal cord they did not know what it was they had never seen anything like it before. It left me with numbness and tingling and pain in my left hand and arm and slight numbness in my left leg and foot. At the moment I am having problems with pain in my neck and I have difficulty holding my head up when I walk. I am down to MRI scans every two years now and am waiting to go for physiotherapy but when I think how lucky I was not to be paralysed from the neck down after the op I am very grateful. It is good to realise that you are not the only one I never realised until I came across this sight that it was so common. Megan.
Message posted: 2008-01-27 19:37:11 by Vanessa
Hi Mike, glad to hear you are still improving, even though it is slow. My progress is good. I'm walking with 2 sticks, 1 stick around the house, but very slowly. I have to walk looking at my feet as I still haven't got full sensation yet. I would say I have about 80% of my feeling back. I'm seeing someone in orthotics in February and my physio suggested asking them if anything can be done about the numbness. My physio seems to think there is wet suit type material that you wear which is meant to help stimulate feeling. I will let you know how I get on. Has anyone suggested Botox to you. I found this very helpful.
Message posted: 2008-01-27 13:54:19 by Clive
Hi Lisa, Sorry for late response. I had experienced neck pain for 4 years and then had muscle wasting in hands and inability to use buttons etc. My surgeon said it would have to come out sometime and the longer it remained the harder it would be to remove. I read you have seen 3 surgeons but these things are exceedingly rare as are surgeons truly experienced in dealing with them.
On rehab, I was in residential for 3 months post op and had regular therapy visits for three years after that. All sorts of exercises, which sadly I do not now do as much as I should.
Message posted: 2008-01-27 11:05:39 by Mike
Hi Vanessa, Im getting on well with the physio but as you know..its a slow process just seeing very gradual improvements from time to time. My mobility is not too bad.. I can walk very short distances with crutches (have to wear a split on my left leg due to drop foot which helps a lot.) I have a very weak left leg and a strong right leg. Due to the nerve damage I find it difficult knowing where im placing my feet (fall over a lot)..got a lot of unusual sensations in my feet! Apart from the spasams and stiffness everything is OK! How is your recovery going? Did you have unusal sensations and have they lessened over time?
Message posted: 2008-01-25 17:51:08 by Vanessa
Hi Mike, It's good to hear the dark times are less frequent for you. I'm now 1 year and 4 months since my operation and things are moving very slowly. It gets frustrating at times but what choice do we have. How are you getting on with physio and what is your mobility like?
Message posted: 2008-01-24 16:37:38 by Mike
Hi Lisa. I found the emotional side of this condition the hardest to cope with. I was a healthy, very fit and active young man and to be told I had to undergo a risky operation or become totally paralysed left me in total emotional shock. I was devastated. I had 4 weeks from finding out to my operation and they were the worst for weeks of my life. I cried every day and felt totally hopeless. During this time i must have gone through every type of emotion..anger..dispair..disbelief. I kept asking why me? My friend said i had to be pragmatic..you have it and the surgeons can do wonders but the cant cure worry. This helped me a lot. The worst part was telling my daughter her daddy wasnt very well. It broke my heart to see her face. Im over 3 months post op and feeling a lot brighter..i still have my dark times..i find it hard to cope with the loss of mobility and the frustrations that it can bring. Thankfully the dark times are getting less frequent. My thoughts are with you Lisa..its ok to get angry..i know its not easy and i hope all works out for you
Message posted: 2008-01-24 15:57:08 by Mike
Hi Jilly, sorry for the dealy in responding to your questions not had access to a computer for a few days. I had my op at Walton Neuro in Liverpool (consultant and staff were excellent). My rehab (after a bit of a fight with local PCT) is at The Midlands Centre for Spinal Injuries. I really appreciate all what the staff here are doing for me..swimming, gym, OT and physio and all the clinical and holistic needs are taken care of. Ive had hot sweats at night but these have started to diminish over time. Mike
Message posted: 2008-01-24 10:39:35 by Sue
Hi Everyone. I would like to know if anyone has a cyst with their tumour. I would also like to know if anyone has undergone some kind of drainage procedure and what this entailed to relieve the pressure inside the spinal cord caused by the cyst. If so,how soon was it after the original op that the residual cyst started to get larger? At what point did the drainage procedure become necessary?
Message posted: 2008-01-22 16:01:17 by Alison
Hi Lisa. You have had plenty of advice then, so I suppose you need to wait now and see how things go. It's a difficult time. I wish you well. Alison
Message posted: 2008-01-22 09:54:00 by Lisa
Hi Alison. I also realise the defecits pre op could mean better recovery post-op but I have seen three surgeons now whom although differ in opinion as to whether it is an ependymoma or astrocytoma they still feel that neurological defecits are minor compared to what they would be post op. I can understand their thinking in a way its just that because I know eventually I have to have the op it leaves me little hope in what I will end up like! Apparently its infiltrative within the cord. They want to wait for it to get worse. They have suggested a decompression but even that they are reluctant to do. I wish everybody well who has had their operation and hope that everyone can get back to normality and their normal lives. At least it gives us hope for those of us waiting for the op. Best wishes
Message posted: 2008-01-22 09:48:43 by Lisa
Louise good luck with your operation when you finally have it. You must be on an emotional roller coaster with having the op cancelled. Still I wish you all the best and hope that the pain will diminish and go after the operation. Best wishes
Message posted: 2008-01-22 09:47:28 by Lisa
John Good luck on your recovery. By the sound of it you are a highly determined individual and no doubt will be on the ski slopes next year. I've tried skiing and my fear of heights got the better of me but hopefully I will be doing things like ballet and boxercise which I thoroughly enjoyed once.
Message posted: 2008-01-21 13:34:50 by Lisa
Clive - that didn't give you much time to think! Was it an emergency your operation? What sort of defecits did you have pre op? How are you post op?
Message posted: 2008-01-21 02:45:42 by John
Hello Clive. What type of physiotherapy exercises have you been through? Mine are very standard. I am in week 5 post surgery. I warm up on elliptical machine, sets of weights for quads and hamstrings. It ends with sets of ankle stability and core strength work. I have also started on balance boards.
I am doing the full program every day but I need to rest between each set as the numbness sets in quickly. It seems to take forever for very slow progress.
Message posted: 2008-01-20 12:51:21 by Clive
Hi Lisa
I also have had my tumour removed. I suppose I was lucky in that the anguish which I remember was considerable was helped by the fact that from diagnosis to the operation was less than two weeks. The best advice I can give is try to find a neurosurgeon really experienced with spinal tumours and a good rehabilitation/physiotherapy unit for after the op. You may find you have to be assertive with your GP
Message posted: 2008-01-19 15:11:21 by Alison
Hi Lisa. I've had my surgery I'm afraid, but can appreciate your situation. My surgeon told me that they couldn't identify my tumour type without at least doing a biopsy. I'd be inclined to seek another opinion or ask your surgeon to detail further why he is prepared to wait. I believed that the fewer deficits prior to surgery, the better the potential outcome. Surgery on these tumours is hard for recovery, but at least when you are the other side of surgery you feel the probelm is being tackled. Keep us posted. Alison
Message posted: 2008-01-19 14:38:34 by louise
hi, lisa my tumour is also wrapped around my spinal cord, it affects my left leg and foot, ive have had a few ops in the last few weeks cancelled, my emotions are up and down i feel the doctors are playing with my future, gettin me wound up then lettin me down, i have been told the op could go either way 50/50. my pain daily test my patience it so hard to deal with. it nice to talk to people who understands what we go through.i hope everything works out for you and you find a surgeon that can get you a better future.
Message posted: 2008-01-19 00:18:58 by John
To Lisa
I know how you feel. I had a t1/t2 tumour removed on Dec13th 2007. The doctors told me it was the most difficult one they had seen in 25 years.
It is amazing how fast you start to recover after the first week (which is a bit nasty)
If 100% was before any of this happened and 0% is numb in a wheel chair I was at about 60% before the surgery and 20% right after. 5 weeks after I am at about 45%.
My goal is 99% in 12 to 18 months and to be back on skis next winter.
Physical therapy is well under way and each day is a little better then the last.
So good luck and may you beat me back to 100%.
Message posted: 2008-01-17 09:48:02 by Lisa
Hi I need to hear from others who are like me who have not yet had their tumour removed. I have an intramedullary tumour T2 to T5 possibly an infiltrative astrocytoma. I do suffer alot with pain and am taking Tramadol. I also have heavy numb feeling in my right foot though this does not affect my walking. I have seen a couple of neurosurgeons none of whom want to touch the thing until my deficits have worsened which is just a matter of time. I feel like a sitting time bomb. Its wierd as I don't want the op and yet I want the tumour out and scared of the damage its causing. I am being monitored but frankly feel quite helpless. I read so many other stories where people have had the tumours removed before they have had major defecits and I get confused. I have been told its all tangled up within the spinal cord and will be very dangerous to remove and will no doubt cause defecits when they do remove it. They also assure me that they won't be able to take it all out. I get so cross sometimes. Is there anyone else who has to deal not only with the physical difficulties but also has to suffer this mental anguish daily? I would love to hear from you. Lisa
Message posted: 2008-01-14 22:47:14 by Alison
Lynette, I saw a Mr. Byrne. He was a very nice man. It was primarily an independant review due to issues around the time of my diagnosis. Like many of us, it can take quite a bit of detective work to get a diagnosis. I had problems being heard at the start. That's all in the past now !! Fingers crossed for Brian's biopsy report. Alison
Message posted: 2008-01-13 20:51:42 by Lynette
Hi Alsion, thanks for the good wishes. Brian's last tumour was treated as an Intradural extramedullary meningioma. The tumour itself was sent all over the place but was never really identifed. Mr. White said it was not behaving in the 'right way'. Not sure what that meant. The current tumour was much bigger and had grown very quickly. Mr. White feels that it came from the first tumour. We will have to wait for the results of the second biopsy to know what this one is. Brian has already had full regular radiotherapy and can't have any more, but Mr. White says that there is a new type of radiotherapy available in Sheffield. This is usually used to treat Brain tumours but Mr. White feels that Brian may be a candidate. We will wait for the MRI body scan results before making any decisions. What did your review tell you? Who were you seeing? I have told Brian about the web site. He wanted me to say thank you for all the support. He may not be white water rafting in the summer but he will enjoy each day for what it brings.
Best wishes Lynette
Message posted: 2008-01-13 16:26:28 by Alison
Lynette, Good news. I've been checking to see if you had posted. They are big ops !! but great for him to be the other side of it. Do you know what type of tumour it was? Mine is an empendymoma. Does he need any follow up radiotherapy? My surgery was carried out in Stoke, but I have been to the Queens Medical Centre for a review. I wish you and your husband all the very best now in his recovery. Alison
Message posted: 2008-01-12 20:49:16 by Lisa
Thanks Mike and Lynette for the info, it was very helpful. We are going to be seen by Mr Tyagi at Leeds General Infirmary. We'll know more after the 12th Feb. Thanks again.
Message posted: 2008-01-12 20:41:20 by Vanessa
Hi everyone, Happy New Year. Hi Lynette, so pleased to hear about Brian. I have been checking the site daily to see if you had written anything. I agree with you about Barrie White, he was my surgeon too. My operation was a success, as he managed to take out all of the tumour, but I was left paralysed after. However, although it is a long and slow process,(a year and 3 months since the operation) I am walking with two sticks, my balance is improving, my spasms have almost gone and my feeling is slowly coming back. It has been bloody hard work though. Barrie White is my hero. I will look forward to hearing how Brian is progressing. Hi Jilly, I have the same problem as you. After my operation I would be wet through, however now I seem to be cold all the time. My physio said this is normal for what our bodies have been through. I don't know if this can be cured though. Please let me know if you find out.
Message posted: 2008-01-12 15:51:35 by Lynette
Hi everyone - just wanted to update you on Brian. Our wonderful surgeon, Barry White at Queens Medical Centre, Nottingham, has done it again. Brian had his operation on Wednesday. It took 7 hours this time and Barry White managed to remove at least 90%. Brian was really poorly for a couple of days but today, Saturday, he is sitting up in a chair eating for England. We feel very fortunate to have beaten this for the second time. I read you message Lisa and I have to say your hubby's condition sounds similar to Brian's. Brian never found an effective pain relief and with not being able to sleep for months decided to go for the operaton on both occasions. Mr. White is one of the best Neuro Surgeons in the country and is known in America for his work. I am not sure where you live but it may be worth thinking about. We feel very lucky to have been looked after by him for the past five years. We are not out of the woods yet but thank you for all your thoughts and kind words. My prayers are with you all and I will continue to update you and read the messages to try to give some feedback to others who face this awful medical condition.
With all best wishes. Lynette
Message posted: 2008-01-12 12:44:55 by Jilly
Happy New Year everyone.
Firstly, I was wondering if anybody has problems with tempreture control? Sweats? Especially at night. I wake up 80% of nights soaked to the skin and my bedding is dripping, yet I'm not necessarily hot, sometimes I'm freezing and shivering, I have heard that it can be caused by a damaged spinal cord, which I have, but was wondering if anyone else has the same problem and if there is something that helps?
Mike - We had the same type of tumour, although mine was lumber region and came out of the operation with the same damage on the left side, I'm just wondering where you had your surgery and if you attended a spinal unit for rehab at all?
Message posted: 2008-01-11 13:15:56 by Mike
Hi Lisa. Im really sorry to hear your news..I have recently had an operation to remove a tumour so I do understand your concerns and worries at this difficult time. Your consultant may be able to answer your questions but it is very difficult to give a definite outcome. I was told if I left the tumour i would eventually become totally paralyised from the chest down (my tumor is T9-T11) Surgery has left me with numbness, paralysis down my left side and I can walk but only on crutches over short distances. Outcome will also depend on the type of tumour and its location.. so it is important to ask your consultant...try your gp (my gp has been very supportive)I had an intramedullary tumour (inside the cord)so to remove it, the cord had to be damaged. Best wishes to you both & I do hope you have a good outcome.
Message posted: 2008-01-11 10:10:57 by Lisa
Hi everybody - fantastic site with a wealth of information. My husband has a spinal tumour between c3 and c5, this has resulted in losing feeling in his left arm with pins and needles which becomes extremely painful - so much so he cannot go to bed at night until he is completely exhausted. When we were given the diagnosis 6 months ago the consultant did not know what he could take for the pain! Any ideas would be welcomed. My husband has just had another MRI to see if the tumour has grown and we have an appointment to see a neuro surgeon at the beginning of Feb for the results. We are really worried that this means my husband will have to have surgery - something my husband does not want due to the risks involved. Are there any other ways of dealing with a spinal tumour - non surgical? Also, if surgery is required but refused by husband what will happen? Any advise would be gratefully received, thanks from a very worried wife.
Message posted: 2008-01-10 21:36:52 by Jane
Hi to everyone, I've just been having a look at the recent messages to see how everyone's doing and would like to wish Lynette and her husband Brian all the best. I hope his surgery went well and that he recovers well. I have an appointment to see my consultant to discuss why I have lost feeling in my legs and feet again next wednesday. I'm not actually seeing my old surgeon because he's unfortunately been taken very ill and isn't expected back for 3 months or more, so I really hope that he's not too ill, after-all he's a hero! I'm seeing his registrar who I'm told is very good. To be honest I'm not really expecting a difinitive answer, I think because the MRI was clear they're just going to put it down to "one of those things" but I'll let you know.
Keep well and stay strong.
Best Wishes, Jane xx
Message posted: 2008-01-07 19:26:55 by sara
Hi Alison, thanks for letting me know about pregabalin. I've been taking gabapentin for about a year now and fortunately do not suffer much pain. It's good to know there are alternatives out there should I need them though. My main source of discomfort continues to be the tightness of my chest. I noticed a few other people who have had tumours in the upper spine also seem to suffer from this. My usual physiotherapy exercises do not seem to help at all. Has anyone got any ideas? Also good luck to Lynette and her husband. I hope the operation goes well.
Message posted: 2008-01-05 20:29:55 by Alison
Hi Lynette, I'm pleased that your husband is receiving attention. The awful truth is that these things just don't go away on their own. It's going to be a very difficult time up until his surgery. I've been there several times and appreciate how hard it is. Hang in there and Wednesday will arrive and you can both get the other side of his surgery. Then with rest and recovery time you can move on. Just know that others are willing your husband a good outcome. All the best, Alison.
Message posted: 2008-01-04 17:39:22 by Lynette
Hi Mike, Clive and Alison. Thank you so much for taking the time to write. Just an update for you. The Consultant called us last night and is going to operate on Wednesday. We have strong faith and know that this is the first hurdle but are feeling very positive. The Consultant has said that this tumour has grown from the one previously removed but seems more aggresive - it is already 3.8cm. Brian is on his steroids prior to the op(he quite likes that bit he feels well) and is looking forward to having a full nights sleep - not much to ask. I will keep you updated on the progress. Thanks again and all prayers gratefully recieved.
Message posted: 2008-01-03 13:41:28 by Mike
Hi Lyn, I can appreciate that things are very difficult for you both in all respects..ive recently had a tumour removed and am going through the slow process of rebuilding my life. Im ex-army and currently serving in the TA (38 yrs old) Ive found my old military attitude of approaching every challange with 100% commitment (but taking every opportunity to complain and take the michael out of myself) has helped to keep me smiling. I do hope all turns out well for you both.
Message posted: 2008-01-01 17:39:32 by Clive Aldenhoven
Hi Lynette, I was also 49 when I had my op, intramedullary C1-C5. After a few years of neck pain and misdiagnosis the numbness and muscle wasting in my hands and arms led to MRI and diagnosis. A British neurosurgeon was reluctant to operate (this was 1995). I went to New York the next day where they operated immediately. I was lucky. They got it all out and no recurrence after 12 years. My only regret is that I was not diagnosed earlier and had it removed before it caused some unrepairable damage.
For what it is worth my advise would be to have the op but you may want to check how many similar ops the surgeon has performed. The three to six months after the op can be a challenge but I suspect that if your husband is fit he will respond to all that rather well. I wish you both the very best of luck.
Message posted: 2007-12-29 22:59:39 by Alison
Hi Lisa & Sara, I was on 1800mg of Gabapentin for about 18 months after my two ops in 2004. I've now been on Pregabalin (Lyrica) for the last 18 months or so. I found that Gabapentin wasn't as effective for me after a period of time, as if my body had grown used to it. I am now taking Pregabalin (Lyrica). Pregabalin is a similar med but newer I believe. I prefer it, but as with Gabapentin it only reduces nerve damage pain and does not get rid of it for me. I carried about 1/2 a stone extra weight after surgery with inactivity, meds, etc., but have found this has reduced back to normal now. I think the meds slow your digestive system down and this can't help with weight. Take care Alison
Message posted: 2007-12-29 22:34:33 by Alison
So sorry to hear of your husband's recent scan results, especially having been given an all clear. I had/have my tumour at C1-C3, being left with about 5-10% of tumour after two surgeries in 2004. I now have a syrinx (spinal fluid cyst within my cord) which also shows on MRIs. It's going to be difficult for you seeing your husband undergoing further surgery, but if that's the route to go than in general we go with the advice of these highly qualified surgeons. So much can be done to keep on top of our condition. I've read of others with spinal cord tumours who have had recurrent issues in their lives and continue on with life after surgery/treatment. Please try to stay strong and get past this current hurdle. It's hard to say it now, but it's better to know what you are currently dealing with and then you'll know what's best for your husband.
Message posted: 2007-12-28 15:07:44 by Lynette
Hi,
Just surfing the sites for information and came across this one.
My husband had one ‘intradural extramedullary tumour was removed in 2001 following problems with pain. This Tumour was on c3/c5 behind the the cord. It was thought to be benign but was not identified when sent for a histology report. This tumour grew back pea sized in 2003 and a five week course of radiotherapy followed. This January my husband was given the all clear and discharged although there was the possibility that the tumour would continue to grow slowly and might need surgery in later years.
My husband has been really well until August this year when he began to experience pain and discomfort - we arranged a scan and this has now shown a much larger tumour 3.8cm which is in front of the cord just above the first tumour. This was not there in January this year. The surgeon wants to operate very soon.
Any help, advice, good news stories, ideas of what we are dealing with.
My husband is 49. Always had very good health, 25 years in the Royal Navy, extremely fit in every respect? We are not sure what has happened.
Many thanks,
Lyn
Message posted: 2007-12-27 15:04:34 by jean
Hi Mike
Thanks for message. My tumour is C3-C8 and is
diffuse. I am also quite old so maybe that is why operation is not considered.
Happy New Year everyone in spite of your problems.
Message posted: 2007-12-23 10:46:30 by Helen and Carole
MERRY CHRISTMAS and we wish you all a healthy 2008. We are delighted to see the message board giving access to many people and enabling all of you to discuss issues regarding benign tumours.
We hope to develop the Message board into different sections in 2008 and would welcome feedback on types of pages we could add - direct to our email address.
Carole and Helen.
Message posted: 2007-12-21 11:48:40 by Jane
Hi Kerry and everyone! I had my results today by phone - fantastic news - my tumour has not returned. I am so very relieved. I need to go and see my consultant in the new year to try and discover why I still can't feel my legs and feet properly, but just now I don't care about that. I was totally convinced it had come back. Please, please all of you who are not feeling well right now try to enjoy Christmas. Love and best wished to you all and keep well. Jane xx
Message posted: 2007-12-20 19:43:23 by louise
thanks pendy,i also take just paracetamol, my tumour is attached to my spinal cord on both my left and my right side, ive been having a lot of buttocks pain and numbness lately so i cant wait to have this op, i am going to give my kids a great crimbo, merry christmas to you all, hope everything will be better in 2oo8 for every1 on this site x
Message posted: 2007-12-20 13:46:20 by Pendy
Hi All
Has anyone had problems with food becoming stuck in their gullet. I was recently admitted into hospital for two nights until the blockage managed to clear itself. I was informed that my gullet had gone into spasm and it had nothing to do with my residual tumour or cyst. I can,t help thinking that the upper tight abdominal pain around the ribcage which I suffer with may have caused the problem. I am concerned that messages from the brain are causing other parts of my body to dysfunction as a result of nerve damage. I would be most interested to know if any of you have experienced this problem.
Message posted: 2007-12-19 23:07:10 by Catherine
Hi Jean & Mike, I had intramedullary ependymoma tumour removed from the top of my spine in April,07 at Royal Hospital,Belfast. Consultants and staff excellent. Prior to surgery, I had unbearable neck pain and headaches, aswell as numbness in my finger tips and soles of my feet. Following surgery which removed all of the tumour, I am home and walking but have numbness on my left side,especially foot and leg and extreme tightness in chest.Jean,I am sorry to hear you cannot have operation-I wish you only the best. Mike, keep up the good work and I hope you get home for Christmas.
Message posted: 2007-12-19 13:30:11 by Mike
Hi Jean, I have an intramedullary tumour which has left my with incomplete paralasis affecting my lower limbs...I had an op in oct this year which was to debulk the tumor (T9-T11). I was walking prior to the op but was told I would eventually become totally paralysed from the belly down. Im 38 year old male living in Cheshire and the op was at Walton Neuro Centre in Liverpool..the staff and consultants there were fantastic. Im sorry to hear you cant have an op..where is your tumour? Im glad to hear you dont have any pain..i was in agony prior to the op and still have some lumber pain and stiffness in legs and back. Im in rehab at the moment hoping to get home for Christmas. Best wishes
Message posted: 2007-12-19 09:49:53 by Jane
Hi Kerry, thank you for your message. I am waiting for the results of my MRI. We get kind of used to waiting don't we!I spoke to my consultants secretary yesterday to see if there was any news and she's promised to get me some information before Christmas. I'm sort of hoping that no news is good news. So it's fingers crossed and wait for news. I'll keep you posted. Thanks Jane.
Message posted: 2007-12-18 12:18:14 by JEAN HARRISON
Have intramedullary spinal cord tumour and lower half of body completely paralysed but suffer no real pain. Is anyone else our there paralysed. Been told cannot operate.
Message posted: 2007-12-16 17:38:28 by pendy
Hi Louise
I am sorry to read your tumour has come back. I hope all goes well with your next op. Where is the tumour sited? I am assuming that being on the left side means that it is outside of the spinal cord? I choose not to take any form of medication other than paracetomol as I can plan my day to suit how my residual symptoms affect me, my children are now adults living away from home and so I have very few commitments. Try to have a good xmas for the sake of your children. Take care.
Message posted: 2007-12-11 20:40:16 by louise
i have just had another mri scan, it has shown my tumour on my left side has came back and also i have a new on grown on my right side which has resulted in nubness on my right leg also. i have taken all medication tramdol, gabapentin,diclofenac's but gives me no relief at all, i am going in for a op in january after surgoen told me to spend christmas with my kids. hope to have a good new year
Message posted: 2007-12-10 21:52:09 by confused
I feel we need to clarify how the spinal cord is made up. From the neck down in order we have C1 to C7, T1 to T12 and then L1 to L5. I am not aware of an L6 but please correct me if I am wrong. I know from personal experience about the very stressful and embarrassing times I suffer as a result of some nerve damage. My tumour was sited at the very tip of my spinal cord where all the nerve endings meet and it was not possible to remove all of it. I continue to live in hope that the remaining cells will not turn nasty, however I am grateful that I still have the use of my legs and cope as best I can with my residual symptoms.
Message posted: 2007-12-04 21:13:56 by rachel
Had my T12 to L6 ependymoma removed in jan this year. The nerve damage in my bum cheek & leg seems more painful now than a few months ago, but I am moving house, so have been doing more (moving boxes etc) Have been looking on the web about recurrence of the tumour - has this happened to anyone & how long after the original tumour was removed?
Message posted: 2007-12-03 21:19:56 by Sara
Hi Lisa, I started taking Gabapentin immediately after my surgery. I did gain weight but I'm sure it was due to enforced inactivity and lots of comfort eating. I still take Gabapentin but now I have returned to my normal healthy(ish) diet my weight has gone back to its usual level without any special effort. I don't think you're being superficial worrying about this, for me 'looking well' has become far more important than before. I think it's because it's something to focus on which feels a bit more in my control than all the other scary stuff. Good luck with the Gabapentin I hope it helps.
Message posted: 2007-12-03 10:19:19 by Kerry
Hi Jane
Just wondered how you got on with your scan on Saturday..? I had my second operation back in April to remove a tumour that had come back. If you want to discuss in more detail please feel free to contact me.!
Message posted: 2007-11-30 16:22:39 by Lisa
Hi Sara. I have just been prescribed gabapentin. I am currently taking Tramadol. I know this sounds superficial but I've heard Gabapentin causes weight gain - have you found this to be the case? I have an intramedullary tumour C5/6 to T5 which is all tangled up so no-one wants to touch it until my defecits are so detrimental that the risk of paralysis is worth taking. I'm under watch, wait and see which drives me insane both physically and mentally. Any way now that I no longer go to the gym after being a three times a week girl the thought of taking another pain killer only to get addicted to that one and put on weight is too much. I welcome your thoughts and anyone else's if they take this med. Thanks.
Message posted: 2007-11-29 00:16:45 by mak164
For those who are not yet aware of its existence and need to find out as much as they can about SCT, there is an excellent US site at www.spinalcordtumor.org. Most of the contributors are from the USA, but there is a worldwide distribution and much excellent material. It is a useful addition to the resources offered on spinalcordtumour.org.uk.
Message posted: 2007-11-28 18:56:31 by sara
Hi everyone, I had a tumour removed in Nov 2006 from T1. I am up and about but have been left with numbness from the chest down, especially in my right foot. I also suffer from feeling as if a tight band is constricting my ribcage. Has anyone else experienced this, and if so have you found anything that helps? I do regular stretching exercises and take 1200mg of Gabapentin per day (recently upped from 900mg). Thanks to the people who set up this board. I don't know anyone else who has experienced spinal cord problems so to be able to read other people's experiences and hopefully swap some useful advice is amazing.
Message posted: 2007-11-28 15:34:29 by Angela
Hi Mike, Thanks for letting me know about your medication and I'm glad that it's helping you. I'll ask my doctor if he thinks it would be suitable for me.
Message posted: 2007-11-26 21:45:44 by Jane
Hi, I've just found your fab site and wonder if anyone has experienced a return of their tumour? I'm having trouble after 11 years. I had my tumour removed and a follow-up course of radiotherapy, but 11 years later after a hysterectomy I have lost about 80% of the feeling in my legs and feet that I had regained. I am having a scan on Saturday to see if the tumour has returned. Has this happened to anyone else?
Cheers, Jane.
Message posted: 2007-11-26 13:18:36 by Mike
Hi Angela, I have some leg and back pain, with stiffness after an op to remove an intramedullary tumour in october. Im currently in rehab in Oswestry and my physio has reccomended stretching for the leg stiffness. I find this does help but feeling of stiffness is still present. For pain im taking paracetamol and diclofenac which does the job. best wishes, Mike
Message posted: 2007-11-24 16:51:05 by louise
hi, im 24 and have a spinal tumour, i had my first op in 03 and i am due for another i have ben told i will end up in a wheel chair i have 3 kids and i find it really scary. i have no feeling in my left foot or leg and i am in constsnt pain, i am glad i found a web site of such interest. i love reading your storys you inspire me
Message posted: 2007-11-24 16:20:52 by Angela
Hi Everyone, For some time I've had bad pain and stiffness in my legs. I've tried Baclofen but it didn't really help and just made me feel very tired. I'd be interested to know what medication you are all taking for pain and whether you particularly recommend any of them. Thanks.
Message posted: 2007-11-20 18:43:19 by Jill
Hi all, I had an intramedullary L1-L4 that was tadpole shaped, with the tail spiralling down the spinal cord. I had it removed at Frenchay in 2000 and am left with paralysed from waist down on my left side which also has hypersensitivity. I have chronic pain syndrome for which I am on slow release Morhpine, Baclofen, Amytriptlene, Tramadol and Diclofenic. I can get around my small flat with crutches on most days, on others I use an electric wheelchair and the chair all the time out of doors. It took a good 3 years to get my pain under control as it kept increasing, I now have a much better quality of life, I do still need to lie down most afternoons for a couple of hours and spend the odd week in bed or in hospital with spasms, but nerve pain and spasms are now better controlled than they once were. I was in Frenchay for 3 months, my local hospital for 3 and a rehab unit for 3. I was 30 when I had the op, I had had a bad back for a few years but was just given pain killers and exercises, when my left leg started to drag and I was spending weeks on end with paralysing back spasms, they finally gave me an mri. Although, like all of you, this turned my life upside down, I now accept my situation and try my best to stay as healthy as possible. Life is pretty good compared to how it was.
Message posted: 2007-11-12 17:24:13 by Vanessa
Hi Rebecca, I do find I get very tired. My surgeon said we are like athletes having reached their peak, so just cooking dinner is a huge effort. I went back to work in April doing two days a week. I work in an office and it has been great for me as I feel half normal again. The pains I get are just across my stomach and, luckily, they don't last very long. I also haven't got the full feeling back in my legs and it is hard to realise my foot is on the floor. I also have a little boy Sam who is 7 and Luke who is 9. When I first came home they were great, helping with cooking and cleaning but now they see I am able to do most things, they let me. Typical hey. I found it very hard at the beginning to go out in my wheelchair as so many people stared at you, especially when my boys were with me as they just felt so sorry for me. Then when I did manage to walk a short distance out in public, I couldn't believe how many people would stop and stare at me. This knocked my confidence alot, and I have always been a very confident person. However, now I just think, let them stare. Keep in touch and lets hope Sam is toilet trained very soon. What is your oldest sons name?
Message posted: 2007-11-12 16:02:35 by Rebecca
Hi Vanessa
No I wasn't paralysed after the operation but having been flat for 7 days I had to learn to walk again, and being numb it was v strange and hard work at times. But I walk now with no aids and my foot drop that I had before the op has gone. Which is great (as you can imagine tripping up with a buggy is not good news!). To answer some of your questions I don't get spasms in my legs but my left hand will go into a spasm if I am holding a fork tightly. My legs are just pretty numb, and my hands are very weak - changing nappies was interesting ! I take gaberpentin and amitriptalyne at night which numbs the pain slightly and helps me sleep. I also get v tired. Do you find this ?? Being in hospital was v hard after the birth of Sam but it was my older son I missed the worst - he was 21 months at the time - and didn't understand why I was away for 8 weeks.
Where do you have the pain ?- is it just in you chest or do you have it in your legs as well?? It is such a horrible thing we all had to go through (us and our families). It has certainly made me a different person and I have a different view on life. I hope all is ok with you - but I'm sure you don't have much time to think with two young boys - how old are they? hope to hear from you soon - rebecca
Message posted: 2007-11-12 13:39:47 by Vanessa
Hi Mike, nice to hear from you. I will try to explain some of the exercises I am doing now with my private physio, as my previous physio didn't seem to know what she was doing. Alot of physio is concentrated on manipulating the muscles in the leg and feet to reduce spasms. Once these have relaxed a bit you can then concentrate more on building your muscles back up because my muscles are very weak. I have bought a gym mat and an anti-burst gym ball. Lie down and place legs on ball and move ball left and right. Bend knees bringing ball in at the same time. Legs on ball and do pelvic floor exercises. Lie over ball on your stomach and stretch back, then tuck bottom under and pelvic exercises again. Sit on settee and lift foot up keeping ball of foot on floor. Put foot on rolling pin and push back and forth. Stand against worksurface in kitchen and bend knees up and down. Walk sidewards. Make sure you always stretch your legs by standing up against the worksurface and put one leg in front of the other then put the leg behind you to stretch. There are so many more exercises I do. You must let me know if you want to know anymore and I will try to describe them as best as possible. I have recently bought a mini trampoline which I do very gentle bounces, my feet do not come off the trampoline. It has taken a long time for me to get to this stage and I am sure it has been down to poor physio. However, my physio is great now. I wish I had done a video diary of my progress to see how far I have come. I really hope you get a good physio because it makes all the difference. To start of with my balance was dreadful and I was constantly looking at the floor. However, my balance has improved alot. The numbness in my saddle was really bad too but you will be pleased to know that it is almost back to normal. Sorry if I have gone on too much but it's so good to talk. Hope this helps you a bit.
Message posted: 2007-11-11 20:43:34 by Mike
Hi Vanessa, thank you for telling us of your experiences. I am hoping to go into rehab very soon. I was getting a little down waiting on a general wd of the local hospital (who really didnt know what to do with me - the physio however is very good). I would be interested on what to expect in rehab..I have been assessed for the Midlands Centre in Oswestry and the Wirral Neuro rehab. Im pleased to hear you are walking..i can stand now but balance is a bit of an issue. I have numbness in my saddle and my right leg feels stiff all the time but i do have good flexibility. Did the numbness recide for you? I have a 12 year old daughter and the support from my friends and family has been fantastic..I had the op 3rd October and i must admit, i still have dark times where i find comming to terms with this condition difficult..thankfully these are getting more infrequent.
Message posted: 2007-11-11 19:39:34 by Vanessa
Hi Rebecca, yes I agree they keep you busy. I sympathise with you having to have the operation 2 weeks after the birth of your second son. That must have been so hard. I know when I was in hospital they didn't like young children to come into the ward too much because of all the bugs they could pick up, so I would imagine you didn't get much chance to bond with your baby at the beginning. Can I ask if you were paralysed after the operation. Did you suffer alot with spasms in you leg. I am taking Baclofen for my spasms and have had 2 courses of botox (in the leg though unfortunately). Do you get any shooting pains across your chest. Are you walking normally or with a stick. Sorry for all the questions but it's great talking to someone who has been through the same thing, which I am sure we all know is not a nice experience. It's great to hear you are doing well with just a few minor problems.
Message posted: 2007-11-09 13:25:09 by Rebecca
Hi Vanessa, your experience sounds similar to mine. I had an opp to remove my ependymoma from inside the cord (C6 - T4) in Feb 06 (2 weeks after the birth of my second son). I was in hospital for 4 weeks and rehab for 2 weeks. I can walk now but am quite numb from the chest down and have pains in my forearms and hands at night. And my hands are weak esp in the cold!!!! Like you I have a husband and two young boys who keep me going ....and very busy !!!!
Message posted: 2007-11-08 17:33:02 by Vanessa
Hi Palvinder. Sorry to hear about your dad. It's difficult what to say about your dads condition. When I was diagnosed with a tumour inside my spinal cord I was at the stage where I could walk but my legs were weak with pins and needles in my feet. I was given a choice to have the operation straight away or leave the tumour in until it was really necessary to have it taken out. The only danger with leaving it in was that the longer it stayed in the more damage it does to the nerves but if I had the operation I could end up in a wheelchair. I decided to keep the tumour in for another 2 years and when I finally had the operation they told be there was alot of nerve damage and bruising inside my spinal cord. I was in a wheelchair after the operation for some time, but now I am walking with sticks, it's not great but I am walking. There is hope for your dad but unfortunately nothing is guarenteed. I wish him all the best and can understand how hard it is for you. Hope this helps a little.
Message posted: 2007-11-07 18:41:46 by Palvinder Dosanjh
My dad is currently suffering from a tumour in the spine which means over the last couple of months his legs have gonw weaker and is now unable to walk, We are going for another consultation next week to suggest a second operation to fully remove the tumour, is there any chance that he may start to walk a little after this experience, as he is also taking the Sutent drug to control the kidney cancer.
Message posted: 2007-11-05 15:07:45 by Vanessa
Hi, it's great to find the website as I feel like I'm not alone. This is a message to Mike as we have both had very similar operations. In September 2006 I have an intrameduallary tumour (ependymoma) removed from T5-T8. This left me paralysed from below my chest on my left side. The operation was a success as the whole of the tumour was removed. I had to lay flat for 10 days after the operation and slowly a small sign of life appeared back in my leg. I was totally numb from the chest down. I stayed in Queens Medical Hospital in Nottingham for 3 weeks then went to a rehab place for 12 weeks. I was then allowed home as I could transfer into a car from my wheelchair and had a sofabed put in the living room. I have been having physio but unfortunately not very good physio. I had very bad spasms running down my leg and it was also very stiff. I am now seeing a private physio, who is excellent, and things are progressing well. I am now walking on 2 sticks but still have a long way to go. I think it will take another 1 - 2 years before I am, hopefully, walking without sticks. If you need to ask me anything please get in touch. You have a long journey ahead of you but you are young and with the right attitude you will do this. I have a husband and 2 young boys who keep me going.
Message posted: 2007-11-02 11:40:36 by Kerry
Hi Pendy - My god they have treated you terribly, plus added stress that you really dont need. Stay strong and determined and keep on fighting, you deserve to win..!!!! Best wishes Kerry
Message posted: 2007-10-30 10:47:18 by Pendy
Kerry I know what you mean about the insurance side of things. My income was protected as a benefit with my pension and after a year of paying me half my salary they decided based on medical evidence I had no recurrence of my disease and no ongoing restrictions regarding my mobility!!!I complained to my employers who had recently taken over the company and was told I was fortunate to have this benefit in the first place because their staff did not get this. The benefit has since ceased for all employees and I am still in dispute with my employers and the insurers. I have medical evidence from my Neurosurgeon and GP confirming I cannot return to my insured occupation. I have been employed by the company for over 20 years and my pension has not been paid for the last two years. As you can imagine all of this has had a very negative impact on my state of health.
Message posted: 2007-10-29 22:49:59 by mak164
Hi Pendy -
>>Did you not suffer this nerve damage as a result of your op?
Yes - saddle anaesthesia plus patchy anaesthesia in my thighs, calves and feet; Slight weakness in my left leg; slight difficulty in micturition. However, nothing that was seriously lim |
