Hi Everyone, We think it would be a good idea if we hold future SCT Forum meetings on the second Saturdays in April and October so that you can put these dates in your diaries in advance. This means that the next SCT Forum meeting will be in London on Saturday afternoon, 10 April. If you would like to come please let me know by sending me an email to sctforum@yahoo.co.uk, and I'll let you have further information. I look forward to hearing from you. Best wishes, Carole

HI Kerry, I had the same problem with my leg, I was having trouble with right leg as it is numb and some days I thought I was breaking but I wasn't, he got to dangerous, I had a manual car at the time. I decided to get a motobility car and they done the adaptions for me. But if your car is automatic, there are company's they do the alterations for you.Best place to start would be Motobility, most garages will know their number. I hope that is some help for you. If you have any problems let me know and I will try and get the number for you. Take care Tina

Type your message here!Has any one experienced this type of Tumour and if so what were/are your options?

Hello Everyone.! Need some advice regarding driving please if anyone can help. I haven't driven since May, due to fact that my right leg and especially my right foot is very numb and i find it hard to feel the pedal in the car, also find it hard to move my right foot from accelerator to brake pedal.... so decided probably not safe to drive...!!!! Anyway am finding it very frustrating not being able to drive as it really affects my independance. Has anyone had the same problem and found a way round it..? I know you can get alterations done to your car but wouldnt know where to start with it all. Any help greatly appreciated. Best wishes Kerry

Hello Everyone. The deadline for our lastest Survey will be Saturday 13th of February. Thank you for your support.

I wonder has anyone experience of radiotherapy on a post chemo post 3 op tumour that is mostly cyst but likely to cause pressure on the brain stem area if not treated. My daughter has been asked to consider radio rather than watch and wait for symptoms to start and need surgery yet again.

Has anyone had cyberknife to their spinal ependymomas and if so did their Primary Care Trust pay?

Waiting to have my full CNS scan on Tuesday then seeing oncologist a week after. I'm just feeling so down - maybe partly to do with all the 'happy new years' being wished when all I can see in the future is scans & treatment! Have to start the injections ofr egg collection this week too & am wondering if it's actually worth all the hassle as low sucess rate for egg freezing anyway! Has anyone had radiotherapy lower spine yet still conceived? Just looking for some positivity!!

Hi, It was nice to see some praise for The Walton Centre and for myself for sign-posting people to you. Only yesterday, a former neighbour SPOTTED ME and stopped to say hello - and he too may benefit from your information and peer support. I appear as one of your links, so if anyone feels they would benefit from some non-medical advice, second opinions, etc they can get in touch with me. Keep up the good work and Happy New Year. Tony. Patient Advice and Liaison Service (PALS) at The Walton Centre, Liverpool.

Hi Everyone, Best wishes to you all for a Merry Christmas. I would like to take this opportunity to thank you for being a part of The Spinal Cord Tumour Forum in 2009 - and to wish you all a happy and, of course, healthy 2010. Carole

After 2 op's 2 years apart, my latest scan showed growth & now (after saying radiotherapy wouldn't help) I have to have radiotherapy. What's worse, for me, is that I am having my eggs harvested as am 33 & no children. Am devastated. Know I will cope, but it's hard. Does anyone have any experience of radiotherapy for ependymoma? I have heard about 'steroetactic radiotherpay' but they don't do it for the spine where I live & can't see it anywhere?? Please give me some hope!!

In May 2009, I had a Schwananoma removed from my thoracic spine. I really thought after the surgery, my back would heal and I would return to 100 percent. Now with said, it feels hard to complain.. since I am thankful the tumor was benign and I can walk. But, I do wonder if I will ever completely recover. I have trouble sitting, standing, or walking for long periods of time. Sitting is probably the worse. Then everyday it feels like I have pulled a new muscle or just constant pain. The meds help some but I have 4 children and a full-time job..so I have to be careful what I can take for pain. Next week, I return for my first MRI since my surgery. I am praying the tumor is still gone. Plus everyone thinks you should just have returned to normal. Like you had your appendix out 6 months ago! So my question is, have just not given it enough time to heal?

Hi mark I had a tumour removed from my neck twelve years ago, I had my op in Walton too Mr Findlay did mine he was wonderful. Glad you are recoving well, good Luck. Megan

is there anyone who has or was diagnosed with the same really panicing need reasuring help!!!!!!

Hi all, I was directed to this group by an excellent chap from PALS at Walton Neuro. I had a T5 tumour removed last Wednesday (probably a meningioma but am awaiting confirmation). Preop symptoms were weakness and tingling in legs, poor balance and great discomfort lying down. Post op things are much much better. The worst problem at the moment is discomfort from the wound between my shoulders and the painkillers making me a little hazy and sleepy. I know it's early days but I am very pleased with the results so far.

I was at the first meeting and spoke to you about your tumour. I'm so pleased everything went well for you. It is a slow process, nearly 2 years post op and I am still suffering, if I overdo it my spine feels like it has dropped, people that haven't had this done just don't understand.I was interested that you have stopped your Gabapentin. There is no way that I can stop mine, im on morphine patch as well. I was told if I didn't have I could end not being able to control my bowels, and not being able to walk.The pain I get in my leg is unbearable, if they offered me another op and said it would work, I think I would go for it. Have you stopped all tablets?Get plenty of R&R. If you feeling like e-mailing, you can always get in touch with me. Take carex

Type your message here!Im so pleased that your daughter is fine after her operation. Bless her, and she is so young, it's bad enough us adults going through it, but a child its even harder. Take care x

As those who attended the meeting on 17th October will know, I was due to have my op on 8th November. I had been suffering bouts of hiccups and just before the meeting some difficulties with swallowing. I called my consultant on the Monday after the meeting and she called me back to let me know that the op could not wait another two weeks! Bearing in mind that I had to push them to do the op it shows that your own instincts about the op are likely to be right. I had intractable hiccups from the Tuesday to the op which took place on Monday, lasting about four hours. I spent 3 days in a high dependency unit and then a further 2 days on a ward. I could walk (like an old man) two days after the op. On the plus side, I have lost almost all my pre-op neuropathic pain and no longer take gabapentin. I also lost the cold feeling on my face, burnt hand feeling, hiccups and swallowing problem. On the down side I have lost a lot of feeling from the waist down and my legs feel like they are made of plastic and not really connected to me. That said, given the repeated warnings about the risk of paralysis I feel very lucky to be as well as I am, at home, just a week after the op. The tumour was confirmed as a low grade ependymoma and they managed to remove 99% of it. Remarkably, the pressure caused by the syrinx stripped the tumour from the nerves, which may be why I have been so lucky. I am obviously very sore and stiff and a bit frustrated at my lack of strength but I am very happy with the outcome. I hope this little update might ease the minds of others who are pre-op. I would be interested to know how quickly the feeling will return in my legs and bottom half. Is it gradual or will it come back rapidly once it does. Regards, Adrian

Hi Gemma, I'm so sorry to hear of the news of your little girl. I have 2 little boys and I can't imagine anything happening to them so, in that sense, I don't know what you are going through, but I have had a spinal cord tumour so, in that sense, i do. Like others have said, we have all been told the worst case scenario and it usually turns out to be ok. Please keep us all posted on how the operation went. She is in my thoughts and if you ask the forum leader, Carole, for my email address then I will contact you to support you directly. Take care, Melissa.x

Hi Gemma, sorry to hear about your daughter, I'm sure she will be fine. The doctors always give you the worst. They must of told nearly all of us that you can end up paraylised. Try and keep your chin up, lets us know how she gets on.

Hi i have just found this site. I found out today my 2 year old little girl has a tumour in her spine. They are operating on her monday and it may take 18 hours. They have said their is a high risk she will be paralysed waist down. It is T5 to T9. Please can someone give me some hope thank you xxx

Hi everyone. You will see we have added a message on the home page to say I will cease being joint partner in running this website. This message is just to explain that maintaining full time work, helping elderly relatives and wonderful grandchildren has meant that I don't feel I have the time I should have to spend on the site. I will still be a user and be in contact regularly with my dear friend Carole who has had the lion's share of the workload lately. Carole and I have been on a journey together and we will meet up someday. Carole puts tremendous effort into the running of the site and I know that it will continually develop. I would also like to say I have found many friends through the site and, like Carole, I am delighted in the success of the website. Best wishes to all of you and good health in the future.

Hi Everyone, I am arranging a meeting of the Spinal Cord Tumour Forum in London on Saturday 17 October. This will give sufferers of benign spinal cord tumours the chance to meet each other and chat about their experiences. If you would like to come please send me an email to sctforum@yahoo.co.uk and I'll let you have further information. Best wishes to you all, Carole

Hi Martin I'm nearly two years post op, and suffering with nerve pain, I take Gabapentin three times a day, it doesn't really help but it stops me getting peculiar feelings down below. I would like to wake up one day and not have all these dreadful problems, we are all suffering one way or another. I hope the new drugs helps you, perhaps you can let us know. Take care

Hello All, has any had experience of a spinal fluid leak...? Had surgery few weeks ago, last week wound started to swell up and became really painful. Spoke to Consultant who wants me in hospital urgently for another op to fix..! Was hoping I'd seen the last of that place.!

Type your message here!Hello,2 years on since I had spinal cord tumour removed (c1-c4,ependemoma)nerve pain has got a lot worse.A recent mri scan shows no regrowth or scar tissue problem.My GP has now prescribed Lamotrigine!Pregabalin&gabapentine weren't very effective and I didnt like the side effects,has anyone tried this drug and did it work.

Hi, has anyone had any problems with their hearing after an operation for a spinal cord tumour in their neck. Or after radio therapy on their neck. I had my operation and then radio therapy on my neck almost twelve years ago and have recently started having problems with my hearing on due to damaged nerves in my middle ear. I would be very interested to hear if anyone has had a similar problem. Best wishes to everone. Megan.

Hello to all, I hope that everyone is keeping well. I had my op 28th May '09 Spinal cysts attached to spinal cord, op. C1 to T1 I was not to bad after op,niggles here and there, nothing i couldn't cope with, I loose my balance now and again, but, now i am loosing my balance all the time, fell twice this week. Walking, taking my son's arm today and i kept bumping into him. Trying to help out a friend by sewing, using my machine, lost confidence in what i was doing, had to stop, VERY forgetfull, sometimes i feel i'm going round the twist !!! ... I told my other son that i had made an appointment to see my doc and he reminded me that the Neurosurgeon told me it would get worse before getting better. Canc doc's app. Took me ages to type this ... kept making spelling mistakes This is sooo frustrating ! Please someone, put my mind at rest. Has someone experienced anything like this ?

I saw my neurosurgeon today and he has agreed to do my op, if I decide I want it, in early November. I am now in a quandry as to whether I should go ahead now. My last scan was in March and that showed that the tumour has not grown but the syrinx is now very near my brain stem. I have recently started to suffer new symptoms such as a cold face and new areas of numbness but I am fully mobile,can work and live a full family life. My neurosurgeon has made it plain that I could be paralysed from the neck downwards by the op and they have had a patient to whom that happened. I have discussed the position with anyone in my family who will listen today but they can't really help me decide from an informed standpoint. Should I have the op whilst I am well and take the risk or wait and take the risk of further damage in exchange for a so called better quality of life now? My main battle is that I am becoming depressed because I feel I am on a downward slope. Even if the op causes some damage, at least I will have got rid of the tumour and will be able to battle upwards. I would be interested to know how you all resolved the decision as to whether to have the operation. I have arranged another MRI in the next three weeks to gain some thinking time and set the op date to give time to pull out if I get cold feet. Thanks. Adrian

I am 51 years old, spina bifida is low back, never gave me much problem as a child, it was only when I got into my 20's thatI started getting a bit of backache, but I had a fall down the stairs and put it down to that. It wasn't till my 40's that I started to suffer more and then pins and needles and numbness, thats when they done MRI scan and found it.From then its been all down hill, had operation that didn't work,now on lots of medication, but that doesn't seem to work either. My morphine patch just takes the edge of it. Some days are worse than others. I think we all suffer one way or another on this website but at least we know we are not alone.If you ever want to talk please e-mail me. Take care. Tina

Hi to everyone, I have been following all the stories on the site closely. Mike, we met at the get together in London; even Superman would struggle to cope so don't think you are no longer a super hero because you are! We all break down from time to time - who wouldn't, and it helps to let it out every now and then. I have an intremedullary tumour at C6 to T1 and have been advised to wait until my symptoms are worse before risking the operation (very hard to deal with!). Two weeks ago the sensations on my face changed. I have a feeling which I would describe as being like I have a cold pack on my forehead and to the sides of my nose. The areas to the sides of my nose are also very cold to the touch. I wondered whether anyone else has had any similar experiences. I don't know if it is the tumour or something else. I have an appointment on 8th September with my neurosurgeon so I will discuss it with him. Any information would be useful before I go.

I am pleased that you are over the worst and on the road to recovery. I have spina bifida as well, but it doesn't cause me any problems, only backache. When did you have operation for your spina bifida?. We are all suffering one way or another, but it is good to have this group,it makes you feel that you are not the only one suffering. You take care and get plenty of rest

Hello everyone, I hope that is finding you all doing well. I had my op 28th May My operation went well, i have an appointment to see Neursurgeon on 7th Dec. 09 I suppose she wants to have the 6 months to see how i'm coping and what difference there is. My op. was C1 to T1 ( i don't know what that means ) i only know that the scar goes from my neck down towards my spina bifida scar. Neursurgeon also took bone marrow from my hip and put it into my spine, to strengthen it. 2 days after my op the nurse taking blood from my left ring finger ( i am type 11 diabetic ) this finger has been semi numb for a long time, i nearley squeeled out loud, all that built up pain came flooding out my finger lol ... good sign though, finger's no longer numb. All different thing cropping up, but on the whole, i'm doing as well as can be expected. Slipped disc has thrown up sciatica big time, right down to my toes. Stay safe and well everybody. Kind Regards Fiona

My story starts November 2008 when I returned from a trip to Switzerland. I had tingling fingers and feet, then found it hard to walk as my chest and stomach muscles tightened up. I had a neck xray at my local hospital and blood tests. my xray came back clear but my bloods came back with high blood sugar readings pointing to diabeties, after another blood test this was ruled out. I was then sent to The Walton Centre where a nuro doctor who did all these tests. At the time I thought they were a bit strange and never thought there would be anything wrong. After two scans (neither one I managed to complete) they found a growth attached to my spine at t5 and t6. Nothing prepared me for either the pain when I went home or the thought it might be cancer as this had never entered my head. As luck has it the lab test results have come back negative. I was not prepared for how I would feel post op. When I got home the pain was so bad I went onto morphine based patches. Now 3 months on the pain is subsiding and I have returned to work but the fear it may come back again is still there. As for the tingling hands will have to wait till Feb 2010 to see another nuro doctor.

Hope you are well and that your holiday was good. You are welcome to e-mail me or phone and have a chat. Life is hard for all of us on here, some more that others. Pain is a hard thing to deal with, it helps to know that we are not alone. Take Care and hopefully we can e-mail soon.

Type your message here!I'm pleased that you are feeling a bit better. It must be hard for you, its bad enough doing it once! Are you going to physio a lot?. I'm still suffering with leg pain, the morphine patch takes the edge of it. I sometimes wonder if one day I will wake up and feel normal. We can live in hope. I think today I am feeling sorry for myself. People just don't understand, its not them going through it constantly. Are you suffering with nerve damage?. Is it worse 2nd time around? You take care of yourself, I'm here if you need to talk.

Hi, just a quick note to let you know how I am getting on.. its just over 3 weeks post op now and Im feeling a lot stronger but still get very tired just doing the basics..Im not complaining as the Im still on my feet after my 2nd operation... the surgeon was really pleased with my progress. I have a little less movement in my left leg and the nervous pain is a lot stronger than before. I also have a tight band around my chest where the shunt went into my lung.. the surgeon said he hit a nerve when putting the shunt in! Im due to go for 6 weeks of radio treatment which will start in 2 weeks time. The tumor is still a pilocytic astrocytoma so no change in the histology. I still get upset..its funny but I will be feeling fine then something small can set me off... Im working hard at the physio but have to keep reminding myself Im not superman anymore!!!

Type your message here!Hi Sara, sorry to hear of your problems, I know its hard to know what drugs work. I think its trial and error, what works for one, doesn't work for another, I feel for every one on this site, we are all suffering. I find I can't do without my morphine patches now, im climbing the wall when it comes to changing them.I also work for the NHS, but I also get the same ignorance, just because they can't see it, they don't understand. I hope you get your pain relief sorted, if you want to chat give me an e-mail. kind regards Tina x

Hi All. Hope everyone is keeping well, under the circumstances. I had an op back in May to remove a tumour for the third time. I have since had follow up scans etc and am absolutely devastated to say that the tumour has returned again. However this time they cant operate so are suggesting Radiotherapy or alternatively Cyberknife. My Neurosurgeon always told me that Radiotherapy had no effect on these type of tumours. Am now under an Oncologist and they are suggesting Radiotherapy so am a little confused. Was in too much shock to ask any relevant questions..!!! Have never heard of Cyberknife has anyone had this treatment.? How was it..?

Hi guys I wanted to let you know about when I visited an Amercian surgeon and told him of the chronic fatigue I suffered he mentioned the possibility of fibromyalgia which is similar to ME. In Britain, I had various tests with a rheumatologist all of which were inconclusive and so she said that she thought it must be fibromyalgia. There is no one test for this condition it is just discovered by ruling everything else out. There is no magic cure either but simply exercise regularly and gently, rest and healthy eating. Fibromyalgia has a common thread whereby it affects people who have suffered trauma to the body i.e been in an accident and/or suffered/suffering a major illness with or without a major operation. I recommend all those suffering to at least have everything else ruled out and then if it it is suggested that you have fibromyalgia then more knowledge is helpful. I have been desparate to get back on this website after we all met last year but for some reason I have not been able to (technical error or me?!) but I am hoping this will work and I can keep in touch with everyone. My status is still watching still waiting but surgeons are now talking about radiotherapy/biopsy/cyberknife in September however the tumour has shown no signs of growth so its a choice for me to make! Yuk.

Hi Marc I hope this message finds you as well as can be. There are a number of us on the spinal tumour forum who are interested to hear of your progress since you last contacted us. We do not have a contact email address for you so please do get in touch. Best Wishes.

Hi guys! Just looking for some advice. I am nearly 4 years post op and had been making a 'good' recovery and some days I am fine but other days, like today, I just can't get out of bed. I've been online and I seem to have the symptons for ME/CFS. Does anyone else have these chronic fatigue issues? Apparently it can happen as a result of surgery. My body feels like it can't cope and so do I and I have 2 young boys to look after. HELP! XXXXX

Hi , Following two years of chronic back pain I was diagnosed with a paraganglioma ( primary site ) intradural extramedullary tumour which was removed last May . I made a great recovery , and by Oct everything seemed back to normal . But since March this year I have had a few concerns . When I have been walking for more than a couple of hours I can get an intense pain at the very base of my spine.Also my digestion has become very sluggish , and I often experience ano-rectal numbness .Also have a bit of pins and needles in my toes. After a lot of 'pleading' , I finally had a complete CNS MRI scan yesterday . Hope to have an outpatients appt in a few weeks . Obviously I am really worried about recurrence of the tumour . Hoping for the best but fearful of further surgery or radiotherapy ( which I did not have last time). Just reaching out to anyone who has been in the same boat. Thanks

Hi All, Just seen my neurosurgen who has told me I will need another operation as tumour has grown again..It is still in the same level but it is also blocking my CSF (spinal fluid) and I will need a stent to drain the fluid away..drain will go into my lung. After the op will have to have radio treatment. Has anyone had or heard of the stent to drain the fluid away? I was a bit of a shock as was feeling good and felt I had just come to terms with my residual symptoms and getting on with my life. Mike

Just wondering how you have been getting on as your ependynoma and problems associated to this are exactly the same as mine. I was surprise to read that your surgeon wanted you to go through Radiotherapy on your brain and spine 'just in case' there were any seeds that may, or may not be there, seems a very drastic move to cover so much ground at the one time with radiotherapy. I had radiotherapy for 30 sessions on my tumour situated between T6-T11, and if it does regrow again, they will not do radiotherapy again in the same spot because it will cause too much nerve damage, the only other option will be is to try chemotherapy. I would love to hear how you are progressing. Take Care.

I am pleased that you have sorted your pain relieve out. I'm on Gabapentin, the GP changed me to Pregablin, but that didn't work so I'm back on Gabapentin, Amitripyline, tramadol and morphine patches, some days I don't know how I function. I work part time and I find that quite hard some days. People at work don't seem to understand that with all the medication it does make me a bit slow, and also very tired, I'm also forgetting things, don't know if that is to do with medication or me getting a bit older, lol.Do you find the pregablin better than Gabepentin?. If you ever need to chat just e-mail me take care

I've recently been diagnosed with low blood pressure (kept feeling dizzy, light-headed etc) and my GP believes it may be a side-effect of pregabalin. I'm now having to reduce my dose. Has anyone else experienced this side-effect? My GP has suggested Amitriptyline as a possible alternative. Has anyone found this drug helps? Regards to everyone on the site. A few people seem to waiting for surgery imminently, I hope it goes well for you; also a few people seem to have had surgery recently, Please let us know how you are. I don't often post replies as other people do such a great job but I am always wishing everyone the best. Love Sara

Glad to hear that you are back home, try and rest and hopefully things will get better, it must be hard for you having to go through all that again, don't think I could do it. I have nerve damage and its been 18 months now, the doctors still stay it can take up to 2 years for nerves to repair themselves. Im still on morphine can't do without it. I hope you feel better soon love Tina

Hi All. Am home from hospital after my third surgery to remove tumours from L1/2. The pain and nerve damage is a lot worse this time, surgeon said he really had to scrap the tumour away from the nerves, thats why it worse. (maybe its just my age!!!) Still am resting lots and trying to enjoy the sunshine.! They assure me nerve damage will get better, but its a long process.! In the meantime enjoy the morphine and a nice long rest..! Hope everyone is well.? Kerry

Hi Nat,I also had 30 doses of radiotherapy as my tumour was starting to grow again 7mths after my op.I have just had another MRI 2mths after I finished Radio and he said nothing has changed,meaning it hasnt started to grow again(which was the last thing I expected anyway)I thought he would tell me its definately dead and its starting to disintergrate.He told me that they cannot tell if it is dead or not with a MRI after radio,only a biopsy can tell that and that would be too invasive,I'll have MRI's every 6mths for the next two years, then every year after that, so constant monitoring for the rest of my life I imagine.My oncologist said if it starts to grow again, my only option will be chemotherapy as well.They dont give you great confidence that it's not going to grow back again which is scarey,it makes you feel like there's a time bomb inside you sometimes waiting to explode! I also will be interested to hear if anyone has had chemotherapy,my tumour is between T6-T11. Good luck with your treatment Nat.Take care and keep us posted.

Type your message here!I'm sorry so hear about your problems, you have a big decision to make. I had tumour removed from my spinal cord in December 07, I had symptoms for a long time, so I don't know if that made my problems worse. If I didn't have the operation my surgeon said that I would probably loose control of my bladder and bowels. So I had the operation, they removed 70 per cent. I am still suffering with all sorts of pain, and its only the people on this website understand. I hope your operation goes well, if you would like to talk you can always e-mail me. Take care.

Hi, very happy to have found this site and people going through similar things to me. I hope to write up and share my full story when I have time, but I just wanted to ask what people's experiences with chemotherapy are? My tumour was diagnosed in July 2008, I had some of it removed and 30 doses of radiotherapy which helped a lot, but in the last couple of weeks it has returned to be almost the same size as it started out, so my oncologist has recommended chemo. I'd like to hear from anyone who's undergone chemo for a spinal tumour, if they feel it has been successful and if they have any tips for getting through it! Thanks in advance.

Hi Marc, I had an op on a tumour in my neck twelve years come November. I was told I would be paralised from the neck down within one year if I did not have the op and could also end up that way afterwards but I had faith in a wonderful surgeon.so there really was no option. I went ahead and woke up able to move as before although I had numbness in my right leg and arm. The numbness graually wore off and although they are not as strong as they were before and by balance is not perfect it was definately worth it. I also had radio therapy ten months later and didn't notice any more pain or nerve damaage than before. I still get some pain and funny sensations but it is infinately better than it could have been. Good luck Marc let us all know how you are doing I'm sure we will all be rooting for you. Megan

Hello Alison, Thank you for you kind words of support, you are right, i have to stay positive and not dwell on the negative side. Sometimes easier said than done, as we don't know how we are going to be after surgery. I hope the numbness and the nerve damage is better after surgery, that is what i have to hold on to. Talking about it on here to other people who have gone through the same emotions is a great help. Best wishes to all. Fiona

I had a operation to remove a ependymoma tumour between T6-T11 on 010408 in New Zealand,16x6x3mm of this was unable to be removed as it would have caused more nerve damage.I have a numb left hip/leg/foot and my right leg slightly numb,with my bottom'etc'very spongy and numb.I had radiotherapy for 6 wks on 310109 as my last MRI Scan showed the tumour was alive ready to grow once again.Since then the pain has increased especially at night in my left hip down to my knee waking me several times like servere cramp.Has anyone else had increased pain since radiotherapy(probably due to more nerve damage)and what do you take for the pain.I use the xtrainer each day to try to maintain my weight with not being able to do as much during the day with my numb leg.People think because you look the same and only have a limp they think,you are able to do what you use to do,but its not the case which is very frustrating,the pain and sleepy leg is a constant drag which gets you down at times,although I do try to stay positive its very hard sometimes.I have another MRI Scan in a few weeks to see if the Radiation has stunted or killed the tumour! Cross fingers!

Here i go again !!! New operation date given to get rid of pesky cycst attached to spinal cord. My operation date is 28th May. My heart is racing, that will be me, hyper till the day comes around. Feeling scared of the outcome

Type your message here!

hi i a have a huge intramedullary tumor C1-C6 (probably ependynoma) I must have had it for a long time already. As the tumor is entangled in the spinal cord in a corkscrew pattern surgery would involve important neurologic damage and most doctors won't try. I had back and neck pain and sometimes numb feeling in my hands for a long time but my problems are getting worse rapidly (bladder,increasing weakness in legs and arms) Most docters said i'd have to consider using a wheelchair outdoors in the near future. One docter wants to operate but says i'll normally have to expect becoming paralysed from the neck down, and even on a ventilator lifelong. But he favoures surgery even then. Without surgery I will have the same paralysis symptoms in a year, max 2 years time due to compression of the spinal cord so i would gain litte but I would be facing a high risk of further cervicomedullary involvement,further compression and damage to the brainstem and the risk of acute repiratory failure in a non-controlled invironment. And in any case my general condition would become worse making it more difficult to stabilise me. So in a long term perspective it is best to operate now but i'll have to prepare for life with a severe disability. Even with those little options it is not an easy decision i have to make. Marc

Well I have been lurking for a while so thought I should say hi! I had a schwannanoma removed about a year ago at L4. Life is not too bad really compared to some of the expereinces discussed on here. I do get frustated by friends who seem to forget and expect me to do things I would have found easy 2 years ago but now stuggle with (that sounds horrible though as they have been brilliant support). I think that because I don't complain about my back anymore they think that it is all fixed when that isn't really the reality!