Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

If you would like to contact us to tell us your story, we would be very happy to hear from you. Also, let us know if you would like your story to appear on our website. Please drop us a line if you have comments on any of our stories. Perhaps you have been affected in the same way.

Christine's Story

Hasn't had surgery 

People said to me “Chris, just have the surgery and get it over and done with”. If only it were as simple as that!

Five years ago (in Oct 2013) I was told I had a sacral tumour at S1/S2, the pelvic area. The 5 ½ cm tumour has been biopsied as a Grade 1 (benign) Neurofibroma, but is sometimes described as a Schwannoma on my medical notes. Although surgery has been offered to me, I have opted to watch and wait, for reasons I will relate.

It all started back in April 2012 (prior to my 52nd birthday) after we had been away for a once only weekend at a spa hotel. I must have spent too long in the Jacuzzi and Sauna because, after, I suffered the most horrendous urine infection. I then developed pain down my right leg and I was in a ridiculous amount of pain. The Dr said the leg pain was sciatic pain and incidental to the urine infection. The pain went on for days and I couldn’t sleep.

Over the next year and a half I experienced another three bouts of similar pain, that lasted about a week each time, almost always accompanied by a urine infection. During these episodes I was unable to lie down in my bed or settle to rest for long; pain killers just seemed to make me feel bunged up and sick. Luckily for me, these episodes came on quickly and only lasted days. Still, when I had them, I felt completely distraught as I was unable to function normally and was exhausted with the pain and lack of sleep.

I had some treatment by an osteopath to try and ease my sciatic pain. She was mystified as I had a good range of movement in my hips and was quite fit. After a course of treatment, which helped but didn’t cure things completely, she wrote to my GP suggesting an MRI scan.

It was after my fourth bout of horrendous pain that I was finally offered a “precautionary” MRI. I shall never forget that first MRI in a local, mobile scanner, most notably because I went in unaided and suddenly two people arrived to help me get up! I caught a glimpse of something, that looked significant, on the screen as I walked out and asked what it was. The chap seemed nervous and gave a vague response, I said to my Mum, who was waiting for me, “something isn’t right” and a few days later, that was confirmed.

This all happened just before Christmas 2013. I am sure there are people reading this who share this part of my story, the waiting and the uncertainty of diagnosis. At the start there seemed some confusion as to whether my tumour was a nerve sheath tumour or a bone tumour, benign or cancerous. So I spent Christmas and New Year conjuring up all sorts of scenarios in my head and wondering if I would even see another festive season!

In January 2014 a CT guided biopsy was carried out and several weeks on I was told the biopsy showed a large, grade 1, Neurofibroma. The biopsy results were given to me over the phone by the consultant and I was then called for another CT scan before I saw the consultant face to face. I have never quite worked out the reason for this CT scan; I think the consultant thought I was bound to opt for surgery and the scan was preparation for it.

I came out of my face to face meeting with the consultant feeling rather bemused. He suggested I required surgery soon because the tumour was large and may turn cancerous. He explained resection would take two major operations and that nerves may have to be sacrificed in the process, which included the possible loss of urine, bowel and sexual function. My GP later said that maybe I should add mobility to the list as a precaution. By then, on a day to day basis, my symptoms were at the level of mild sciatica and I wasn’t sure I wanted to risk losing functions that I still had. I was actually quite fit. I told him I had just lifted and shifted a lorry load of logs for the winter. He voiced caution at keeping up strenuous activities like this. The consultant said he could arrange a second opinion for me with the person who had trained him. I decided this was the best plan.

The second opinion was rather different. I was told that the kind of tumour I had was at low risk of turning cancerous and slow growing. I was asked why I was reluctant to have surgery and I said it was because I was fit and healthy and there seemed to be risks in surgery that might leave me worse off than I was at present. By then I was 54 years old. He explained that, given my age and the existing size of the tumour, it was very unlikely that I would reach my dotage without the tumour impacting on my life. Therefore, waiting was an option, but that I seriously needed to consider surgery while I was young and fit enough to withstand the two major operations required. I opted to watch and wait, not just for the reasons I have given, but because our daughter was in the midst of GCSEs and college applications.

To remove my tumour I require posterior and later anterior surgery. The first surgery involves drilling a hole through my sacral bone (with the risk of sacral collapse, if the bone cracks) to facilitate excising the tumour from where it arises at S1/S2. The second surgery is to remove the bulk of the tumour which sits within the pelvis in the region of the cauda equina. I have had three caesarean sections, so this will involve working past the scar tissue of those operations to reach behind the womb and bladder. The risks of spinal surgery will be familiar to you. Additionally, in my case, they do not know, until they operate, whether nerves will have to be sacrificed to remove the bulk of the tumour. As far as I understand it, this is because the tumour could have adhered to the many surrounding nerves and removal may mean severing them.

I will fast track to the present situation, five years on (Nov 2018). Since diagnosis I have experienced no further bouts of excruciating pain. I have some tingling in my legs and various low grade pains. I am fit and well and am back to my keep fit classes, after a recent operation to fix two hernias. I have also gone back to winter log shifting, but maybe with a little less gusto!

I opted to have my care transferred to the second consultant, who I have not met face to face since. Instead, I have MRIs and am seen annually and more recently six monthly by one of his staff. Until recently, my tumour seemed to have remained stable and no change had been observed. However, last year I was told that there is a cyst inside and outside my tumour and that the internal cyst seems to have increased in size, although the overall size of the tumour remains the same. The discussion has therefore shifted towards surgery sooner rather than too much later. They are unable to say whether the cysts may have grown and burst before and thus caused me the pain I have experienced in the past. They say they would have to observe during a pain episode for this.

It is such a dilemma. Still, I am reassured that it seems unlikely that my situation will deteriorate suddenly, but obviously elected surgery is less risky than an emergency scenario. Therefore, I take each appointment with an increasingly open mind that surgery may be imminent. I feel grateful that I have had five years of relative stability, although the worry of it all is never far from my mind.

So it hasn’t been an easy five years. When you don’t opt for surgery people soon assume that there can’t actually be anything seriously wrong; especially when you look as fit as they are! I have found it is only my closest friends who have really tried to understand the predicament I am in. This forum has also been invaluable. Through the forum I have been receiving help and support for almost as long as I have known about my tumour; without it I wouldn’t have coped nearly as well. Most notably, at the start, I was put in touch with a lady, by e mail, who has been there to support me at times I have felt low or unsure what to do. Just having someone to listen, is often all you need; someone who has some notion or how you must feel and how difficult the situation and decisions are. I have attended several meetings in London, but until now, have not posted anything on the website. I can only guess that I am not alone in this and that far more is going on and support being given than is reflected on line. Therefore, I feel I owe a debt of gratitude to the courageous ladies who were inspired to set the forum up and for those who work tirelessly to keep it going, THANK YOU.

Helen's Story

My operation (July 2001)  made a fantastic difference in that I could walk again - after surgery the main problem was with my right arm, as root nerves were cut out during the operation, and have been left with a throbbing pressure 24/7 in my arm and hand with some restriction in movement. Residual tumour remains but its growth rate is monitored by MRI scans and the last MRI in 2007 showed the growth was minute and no further operation is planned. However, also in 2007 I started having problems with the ulnar nerve causing muscle wastage in the pinky area of my left hand, presumably due to overuse of this hand. To rest my left hand I now have to try and write more with the damaged right hand and aim to find a balance by using each hand for different tasks to minimise damage.  I am suffering more from burning sensations in the neck and attribute this to my hand problems.

Meeting other people through this website has been humbling and has helped tremendously.  I would like to hear from others who have had a “schwannoma” tumour.

Update August 2018

I had my last MRI scan in 2010 and as far as my consultant is concerned I am not any longer ‘on the books’. The 5% tumour that remains post operation is contained in a protective sheath that my body seemingly has created and has not increased in size from 2001 to 2010. I still have pain in the shoulders and oversensitivity in my right arm and hand.

I have had a variety of health issues over the intervening years and feel my immune system doesn’t cope at times. I have optical hypertension which causes blurred vision and various arthritic complaints. In March 2018 I was diagnosed with Rheumatoid Arthritis and also have an underactive thyroid. I have suffered from fatigue problems since 2001 (post tumour op) and have had to learn to pace myself which is easier now I am retired. Like many others I don’t like taking drugs and found the first two months on Methotrexate (for RA) gruelling as I felt ill all the time. However, my body is now accepting Methotrexate and I have few side effects but the great benefit of being free of pain and swelling in my hands and feet.

I enjoy my hobbies of gardening, landscape painting and walking within the limits of
my dexterity and fatigue.

Ian's Story

My problems started in Jan 2007, my right foot felt cold to me but was warm to the touch.

I went to see my g.p. who in turn sent me to see an orthopaedic consultant, he sent me for a m.r.i. scan after which I went to  see the consultant again and he told me the scan was clear, but by this time my leg was going numb.The consultant then refered me to a neuro consultant.

By the time I had my appointment with the neuro consultant it was Oct2007 and my leg was really numb and I also had burning sensations in my leg, anyway the n. consultant did various tests on me and realised I had a problem. He sent me for another  m.r.i. scan but this time the scan covered all my spine not just my hip area as before.

Some 3weeks past and I received a letter from the n. consultant telling me they had found a swelling on my spinal cord and to see my g.p. immediately. I went to see my g.p. who told me I had a tumour on my spinal cord; the word tumour frightened the life out of me but he told me it was probably benign. An appointment was made for me to see a neuro surgeon at a neuro hospital. Chistmas/new year went by and now I was having great difficulty in walking and could no longer lift my right leg. I got to see the neuro surgeon  on 08/02/2008 and he explained I needed surgery to remove the tumour and if  I didn't I would definetly end up in a wheelchair, he also explained the risks involved but the choice for me was easy.My op was arranged for the following Wed.

After my op I realised all the numbness had disappeared and I was able to lift my legs again, I was able to walk again ; at first with the help of physio's then with a walking stick. After leaving hospital I received physiotherapy for about 4months, then probably about another 2months before I had reasonable movements in my shoulders.

I returned to work (on light duties) after 9months after which I carried on as normal. I still have pain in my shoulders, around the op scar and especially in my arm pits but this is a small price to pay for being able to walk again.

I still see the neuro surgeon every 12months and have a m.r.i. scan every 2years just to make sure the tumour does't grow again. My tumour was a neurofibroma at t2.

As you can see from my story I have been very lucky and wish to thank all at the local hospital for all their skills and help when I needed them.

Update August 2018

It's now 10yrs since my operation and I have now been discharged from the hospital since numerous M.R.I. scans have shown no signs of the tumour growing again.

I still have pain in my shoulders but can manage with pain killers my doctor has given me. Some areas of my shoulders are still numb but this is probably a result of the operation.

I can now most things that I could before the tumour caused problems, but have to take it easy otherwise I suffer for my efforts, but when I think back to how I was just before the operation I realise how lucky I am.

I would like to thank all the team at "The Walton Centre" Liverpool, and will always be in their debt.

Finally I hope my story gives some hope and comfort to anyone out there who has been diagnosed with a spinal cord tumour and if anyone wants to contact me please ask Carole for my email address.

Phil’s Story

Schwannoma - Intradural Tumor L5 & T2

My story started approximately 3 years ago when I went to the doctor because I had pain in my right leg, initially
started around my hamstring but with time moved further down my leg. Following my examination I was told I
actually had sciatica and went for a number of physiotherapy sessions and was advised to exercise on a regular basis, apparently walking was ideal.

I embarked on my walking regime and things did get easier for a while, however approximately a year ago I noticed pain in my lower right leg/ foot, at times this was a real burning sensation that really hurt!! The majority of the time I found the pain to be relatively dull, it was however worse at night and became almost constant.

In May 2015 I decided to go back to my doctor, he again thought it was sciatica but referred me to a back specialist to be checked over completely as I have private medical insurance. I saw a specialist who referred me for an MRI scan. The scan results showed I had a spinal tumor in my lower spine and I was referred to a neurosurgeon. I was fortunate, I only had to wait a week for my appointment, however in this time I researched spinal tumors on the internet and read numerous very scary stories, none of which had the answers to the questions I had, but did manage to frighten me.

When I met the consultant for the first time he was very reassuring, telling me he could remove the tumor without any problems and he expected me to make a full recovery. He asked however that I have another MRI scan on the remainder of my back and brain as a precautionary measure. Apparently this was just to ensure I had no more tumors, it was felt this was highly unlikely and as such there was no need for a follow-up appointment before my surgery.

Two weeks later (June 2015) I was due to have the tumor in the lower part of my spine removed, but just before the operation I was informed two more tumors had been identified, one pushing against my spinal cord at the top of my spine and the other around the front of my neck, and as such I would require further surgery. It was agreed I would stay in hospital and get the tumor at the top of my spine removed the following week.

The first operation was painless, however I was required to lay flat for 48 hours, which made eating and drinking quite tricky - I found the second day to be quite uncomfortable as I had become constipated due to the painkillers and lack of movement. On day three the physiotherapist got me up, I was warned I may faint, fortunately this did not happen. I was able to take a few steps and sit up in bed. The physiotherapist signed me off saying I was allowed to walk alone, this gave me more freedom and meant I could shower etc. My walking was very slow and quite stiff but I could walk small distances.

The following week arrived and I was due my second operation. I was warned the recovery would be more painful due to the location of the surgery - entry was made between my shoulder blades. Again the operation was painless, and this time I was allowed to sit up to a maximum of 30 degrees - I found this much easier, however it was more painful to move due to the location of the surgery (as expected). On day three the physiotherapist came to get me up as before, I was really confident, as was she that this would not be a problem and that I would be up and walking. I found getting up really painful and once standing my blood pressure plummeted to the extent that I nearly fainted, so I was laid back down and told to wait another day - I found this demoralising and was quite frustrated as I wanted to get back to normal as soon as possible. The next day arrived and I managed to get up and walk without too much difficulty.

A few days later I was discharged from hospital, armed with painkillers and dressings for my wounds, with strict instructions I was not to lift anything heavy for 6 weeks. Over the first couple of days I found it a little difficult doing quite simple things such as getting in and out of bed; this soon passed and I started to cut down on the painkillers. Within a week I was able to walk around the block and even managed to take my wife out.

As I write this, it is 4 weeks to the day since my second operation. I am no longer taking painkillers, have just completed my second 2 mile walk of the day, been able to log on and do some work and have no pain in my legs. My back feels a little sore but nothing major.

In closing I would summarise that initially I was very daunted by the diagnosis of these tumors, however with the great care, support and love provided by my wife, children, family, friends, the consultant and the wonderful staff at the hospital, I have come through the other side and I am not daunted by my impending third operation.

Having read other peoples stories on this website I fully appreciate how lucky I am and my thoughts are with those people. I am not the type of person who would normally submit an article such as this but I wanted to give others who have just been diagnosed hope.

Carolyn’s Story

I was first diagnosed in 2008 after having back pain since July 2007 following slipping on a wet floor. I had difficulty abducting my right leg but once my primary symptoms settled down I still had this awful back ache that didn't seem to respond to anything.

As a nurse I was used to back ache but after two lots of physio I asked my GP if he would organise a MRI scan before I opted for local spinal injections through the pain clinic.

The result of that was a lumber spinal tumour at L1/ L2 which they thought was a schwannoma.

This came as a huge shock and for some time I felt like a rabbit in the head lights. We were on holiday at the time and had to wait a week or two before we saw the GP and organised a consultation with a Neuro Surgeon.

My husband was a Intensive Care consultant at the time and spoke to a colleague who recommended a surgeon who specialised in complex spinal surgery.

When we eventually met him after what felt like agonisingly, sleepless months he wasn't unduly concerned about it. He felt it was a slow growing lesion which I had probably had for many years and may well not need any treatment at all. He suggested that we leave it alone and organise yearly scans and suggested that I see a sport consultant regarding my back pain which he felt was mostly degenerative but if at anytime I wanted it removed he would happily do so but at that time felt it was more want than need. I was full aware that going in and operating carried a risk of enormous complications and may well leave me with more symptoms than i had.

I remember leaving the office not knowing exactly how I felt. Over the months before my consultation I had geared myself for surgery and all the implications that involved. My husband on the other hand was so relieved.

Over the course of the following five years I had numerous consultations with my surgeon as my symptoms changed from back ache to pains down my right leg and radiating from my spine to my hip. I then started to get weakness in my right thigh and then by the beginning of March 2013 bladder problems and parathesia that radiated from my feet to my waist.

By the beginning of October I couldn't carry on as I was and we contacted a neurologist at a local hospital who suggested we get in touch with my surgeon, which we did. After having problems organising an urgent scan my consultant admitted me on the Wednesday and after a MDT meeting on the Friday felt that it had changed and told me that if left would leave me paralysed from the waist down and doubly incontinent . So I signed the consent form there and then and after being discharged on conditioning steroids,returned the  following week and had my surgery.

My tumour turned out to be a myxo papillary ependymoma  and luckily came out en block.

I have had a full spine and brain scan and so far so good!

My prognosis is very good and I try not to think too much about the possibility of it recurring but I am mindful that it can and because of that will continue to have yearly scans.

Even though it has left me with some troublesome symptoms that have been life changing I feel incredibly lucky. I can walk the dog, go on shopping trips with my children, meet girlfriends for lunch of coffees and make and sell my pottery which has become an important part of my life as the possibility of returning to nursing is not possible anytime soon.

The important thing to me is not to be defined by my illness and what I can no longer do but by what I can and will continue to strive to do.

Donna J, Perth, Australia

I was diagnosed with a Spinal Cord Lipoma in July 2014. A congenital condition as it turns out. Lipomas can appear anywhere in your body, under your skin, in your arm pit – guess I was extremely (un)fortunate to have one in my Spinal Cord!

Of all of the Spinal Cord Tumours out there (which in themselves are fairly uncommon), this one seems to be one of the rarest I’m told. Lipomas are mostly benign, composed of fatty tissue and slow growing.

In 2008, I was pregnant with my first child. During that time I developed what was described to me as “Restless Legs Syndrome”. It drove me to the brink of insanity, I remember at 7 months begging my obstetrician to induce me to relieve the discomfort. But, once my daughter entered the world, the symptoms subsided. It was not until 2010 when I became pregnant again that I sought the recommendations of every practitioner I could. I soon had a mini dispensary of concoctions, remedies and supplements that would see me through the next 9 months and to some extent, it did. My obstetrician, to this day has never encountered, in her entire career, a case like mine. We now know that it was never “Restless Legs Syndrome”, but nerve compression caused by the baby taking up so much space.

From then on in neurological deficits slowly surfaced. There were visual disturbances, leg spasms, headaches, back aches, exaggerated reflexes, bladder disturbances, memory probs, imbalance, tingling and numbness in my limbs.. It was the constant dropping of things, and falling down and my legs giving way, that had me thinking something wasn’t quite right… So, whilst these symptoms had been reported to my GP on various visits, it wasn’t until late 2013 that something ‘clicked’ and I was referred to a neurologist. I waited for four months to see the neurologist (on a non-urgent basis), still unaware of what was going on inside my spinal column. A lumbar puncture and four MRIs later – the original hypothesis of MS was abolished and an Intradural Intra/Extramedullary Spinal Cord Tumour was diagnosed. My tumour is located at the thoracic region (T7-T11).  Due to its size it was now considered urgent.

So, (only a few hours later) off to a neurosurgeon I go. He also happens to be the Head of Neurosurgery at the hospital’s dedicated neurosurgical unit, here in Perth, Australia. Besides all the usual risks of a long haul surgery, I’m told the main risk is permanent paraplegia. His concern in this case was that there is an interpersonal relationship between the lipoma and the spinal cord itself. Which means total removal is unlikely since the lipoma is not a separate entity. The main goal of the surgery was to decompress the spinal cord nerves. The lipoma will continue to grow so regular MRI scans and follow up will be a part of my future. The interventional neuroradiologists, neurosurgeons and neurophysiologists all agreed that surgery was the only option.

My T7 – T11 laminectomy surgery was scheduled for August 13th 2014.

The day after my surgery my neurosurgeon told me that the tumour looked like a lipoma (which pathology later confirmed) and that approximately 10-20% was resected because it was intimately connected with the spinal cord nerves. To free up some space he inserted a dural graft combined with the removal of 4 laminae from my vertebrae. …He was happy overall with the surgery and concluded by saying that my spinal cord was “living on borrowed time”.

I  am continuing to experience a variety of post operative symptoms. Some of it is nerve pain… The weirdest feeling is the lack of sensation (including numbness & tingling) from my waist down. I am not able to sense temperature unless it is at extremes. I have extreme lethargy, poor concentration, visual disturbances, weakness in both my legs,  imbalance, hypereflexia and  bladder and bowel issues. I am learning to live with these ailments as best I can. I am currently taking pregabelin, amitriptyline and when needed ibrobrufen. My next scheduled MRI will be Oct 2015 and then yearly.

When I was first diagnosed, my immediate reaction was “I have a what in my where?” So rare are these tumours that most people (including me) had not heard of this before. I am extremely grateful to my neurosurgeon and his medical team for performing such a delicate (and long) surgery and preserving my ability to walk. I am also understandably very fortunate that in my case my tumour turned out to be benign.