113 replies to this topic

[pinkcloud]

Hi all

A few months ago I had discectomy for t7/8 cord compression. 3/4 of my cord was being compressed. Although I have very good freinds they are all able bodied and so in some ways I feel very alone with my SCI. I am incomplete.

If anyone out there has similar thoracic injuries I would like to hear from you for shared support and inspiration.

I find this website amazing and enjoy reading the threads. I have learnt so much and am so much more positive and in control of my life

ps my profile pic is of me pre-injury

[jennyau]

I had a small prolapsed disc t5t6 and had a discetomy and spinal cord decompression my spinal cord was severly compressed and my surgeon is baffled to why my spinal cord compressed so much as the protrusion was very small.I am incomplete and am now able to get around my walking is still improving at this time.

[pinkcloud]

Hi Jennyau, thanks for replying. I'm sad to hear that your dr was baffled by the size of the cord compression. Its difficult and somewhat scary when the dr's dont understand whats going on with the spine, when its a more rare type of cord compression like yours.

I was lucky to have had the discectomy thorough my back and not thorough the front. I hope that they were able to do this for your too.

I am walking too with a stick but the nerve damage means that my legs shake, I have poor balance and my left leg drags. Well done you for walking too, its tough work isnt but we are very lucky to have use of our legs. Even though its hard work.

May I ask if you get awful pain when standing or sitting? I do and I wonder if this eases with time? I am only 4 months post op

[rue2you]

I am an incomplete but I don't walk at all by myself. I can walk with full leg braces at the parallel bars and some with a walker but only for about 30 feet. I have no sensation and a little movement in my toes, hips and tweaks in my quads. I can crawl some and knee walk. I have some spasms but they are not severe enough to me to be on medication for them. I have a lot of pain in my lower back, hips and weird nerve pain throughout my feet and legs. The more I have gained, the more the pain and nerve pain has gone up so I don't know if it is a good trade or not! I hope you continue to get better!

[Angela250153]

Hi pinkcloud

I had a laminectomy for a T10/11 decompression 4 years ago and an L5/S1 one year later. The thing that sticks most in my mind is that on the morning of my first op was the last time I stood unaided in the shower albait with considerable balance problems. After the op my balance was completely gone and I could not stand anymore.

I had intensive physio in rehab to learn to walk again and now I can only walk a short distance with crutches. I have very odd sensation below the hips like on my left leg I can feel temperature but not in my right. On my L5/S1 op the herniated disc had pressed on one of the sciatic nerve roots and has damaged it to the extent that I have a lot of pain down my right leg and have also developed a skin sensitivity which means that my clothes rubbing against my leg causes a burning pain and has a negative effect on my mobility.

I have had some great support from family and friends, but in time some of it has waned. you are seen to be walking but people don't appreciate how hard it is. Also I started to feel like I was holding people back because I just can't participate easily in things. Going out anywhere is tricky because I can't always go to places they want to go to and for me there is always the question of where the nearest loo is. Even though I can now use a catheder when needed I don't like to use them too often.

[Gleno]

pinkcloud, on 05 August 2010 - 09:05 AM, said:

Hi all

A few months ago I had discectomy for t7/8 cord compression. 3/4 of my cord was being compressed. Although I have very good freinds they are all able bodied and so in some ways I feel very alone with my SCI. I am incomplete.

If anyone out there has similar thoracic injuries I would like to hear from you for shared support and inspiration.

I find this website amazing and enjoy reading the threads. I have learnt so much and am so much more positive and in control of my life

ps my profile pic is of me pre-injury

Hi there Pinkcloud'

I'm brand new here too--haven't even uploaded a pic of myself yet--lol.
Yup--I'm a T5-T6 incomplete lesion but unlike you I can't walk--am permanently disabled. 13 yrs now and going--hmmm--let's say --so so.Like the others who answered you I get a lot of pain too--it's there permanently and only controlled by drugs. Burning pain from the feet up and a lot in my buttocks where obv there's constant pressure from sitting.I can only explain it to people like it feels like being dipped into hot oil up to the chest.That and spasms which I take meds to control that too. If not I wouldn't be able to sit in my wheelchair. Actually--I'm just under the max dosage for spasms but still--if I touch my legs anywhere or put a hand under my knees to lift them it induces spasms.
Oof!--just cannot win!--Anyway--that's life!

Glad to see other people getting together and chatting about similar problems

[jennyau]

Hi Pinkcloud,
Yes I was lucky to have my surgery through the back I have a kind of cross or T scar.My surgeon told me what happened was very rare and there had only been 3 surgeries the same in Australia in 20 yrs before mine and he had preformed one of them . I am just over 5 mths post op so for both of us its early days and I believe things will improve over time. I have been told by my rehab DR I am not to lift over 2.5 kg for the rest of my life My left side is weaker so I limp and and drag my ankle and foot /sometimes my leg just go from under me. I get neropathic pain burning in the feet and my bottom and that hypersensive electric thingy yet if you jabbed me with a needle I wouldnt feel it.I have spasms sometimes all day and night cold water is painful and if I sit for to long when I get up my legs spasm and almost take off on their own looks like I am doing the goose step.I have no feeling from the injury down but when I wake up my legs are in terrible pain.I self cath and am on a bowel program.Have you done any hydrotherapy?I finished my intesive rehabilation in July and the physio I am with does hydrotherapy with me its been great as I dont get the spasms in the water and am able to lift my legs more. Angela I get what you are saying about feeling like you are holding people back and people see you walking its very hard work and exhausting plus every day its a different issue bladder bowel pain ect. I have become very shy since I come home from hospital I am not sure why so its great to get together in a forum like this the people I have met here have a great attitude to life.

Jenny

[pinkcloud]

rue2you, on 05 August 2010 - 01:11 PM, said:

I am an incomplete but I don't walk at all by myself. I can walk with full leg braces at the parallel bars and some with a walker but only for about 30 feet. I have no sensation and a little movement in my toes, hips and tweaks in my quads. I can crawl some and knee walk. I have some spasms but they are not severe enough to me to be on medication for them. I have a lot of pain in my lower back, hips and weird nerve pain throughout my feet and legs. The more I have gained, the more the pain and nerve pain has gone up so I don't know if it is a good trade or not! I hope you continue to get better!

Hi Rue2you

I am on Diclofenac 150mg a day, Pregablin 300mg a day and 8 paracetamol tablets a day.

Like you, the medication works - but only if I stay at the level of activity that I do. Once I push harder the nerve and pain gets worse.

I too get weird pain in my feet - like someone is stabbing them and sciatica type pains running down my legs too.

It sounds like you are a hard worker to get so far with walking 30 feet. I feel thats a great acheivement. A lot of people wouldnt bother with the amount of pain it takes. I think you are a star and very brave. If I didnt have my children, family and friends I would never have bothered to try to walk as it was just too hard.

One thing I learnt, when I was learning to re-walk is that my surgeon pointed out I was walking with a wide gait, - that is I was walking with my feet wide apart, like a toddling child. Apparetly us thoracic people tend to do this to avoid us rocking the spine as we walk. Also he said I cant walk heel to toe. This was causing me worse pain as the muscles I was using, were not the right muscles to use when we walk. Its real hard to walk with the legs closer together. I dont know if you can walk like that but if not maybe ask you physio/surgeon to take a look at the way you walk. Just an idea to see if this helps you in any way. It helped ease my back and hip pain.

Keep up the hard work. Its worth it (except on bad days, then its well worth the rest I say)

[pinkcloud]

Angela250153, on 05 August 2010 - 02:47 PM, said:

Hi pinkcloud

I had a laminectomy for a T10/11 decompression 4 years ago and an L5/S1 one year later. The thing that sticks most in my mind is that on the morning of my first op was the last time I stood unaided in the shower albait with considerable balance problems. After the op my balance was completely gone and I could not stand anymore.

I had intensive physio in rehab to learn to walk again and now I can only walk a short distance with crutches. I have very odd sensation below the hips like on my left leg I can feel temperature but not in my right. On my L5/S1 op the herniated disc had pressed on one of the sciatic nerve roots and has damaged it to the extent that I have a lot of pain down my right leg and have also developed a skin sensitivity which means that my clothes rubbing against my leg causes a burning pain and has a negative effect on my mobility.

I have had some great support from family and friends, but in time some of it has waned. you are seen to be walking but people don't appreciate how hard it is. Also I started to feel like I was holding people back because I just can't participate easily in things. Going out anywhere is tricky because I can't always go to places they want to go to and for me there is always the question of where the nearest loo is. Even though I can now use a catheder when needed I don't like to use them too often.

Hi Angela

My physio says that my trouble with walking is not so much muscles, as it is my brain sending wrong signals so that I have trouble with balance. What you said about having balance problems struck a familiar cord to me. When I am tired and I walk it looks like I am drunk and its easy to trip over. I dont know if its like that for you too?

The leg tempreture issues you have got going on is something to do with the cord damage. Theres a peice written about it on the website here - I'll go and find it and post it on this thread so you can go and have a read.

My skin also is sensitive in areas and so is my toe on my left side - for example on day I put on a toe ring (jewellery) and it felt like my toe was being cut off. Me surgeon said its to do with autonmoic dysflexia. It sounds awful that just clothing sends you with a burning pain agnony. Whow you really do have great sensitivity - to get that pain even by wearing clothes sounds horrific. SCI is awful but to have it to the extent that it even determines what clothes you wear is so sad for me to hear.

With regards to the ability to go out and about I feel that too. To go out of my little village town means I need my son or a friend with me. Its like being a child again for me and having to rely on when others want to go out. Its very restricting, and I understand what your saying, that to go out with others we have to 'put a brave face on, grin and bear the pain it causes for us to keep up the pace'. Its hard work keeping a brave face on things all of the time ist it? Sometimes its nice if we could just say ' hey do you fancy coming out with me today? It will mean we walk at a snails pace, have to rush to the toilet somehow when our bladder calls and I really would like you to hold my hand and deep breathe with me when pain strikes'. To an abled bodied person that invitation may sound un-inviting sometimes . To a fellow SCI it sounds just perfect . And thats how I find this website - we dont have to be brave all of the time.

[pinkcloud]

Gleno, on 05 August 2010 - 05:35 PM, said:

pinkcloud, on 05 August 2010 - 09:05 AM, said:

Hi all

A few months ago I had discectomy for t7/8 cord compression. 3/4 of my cord was being compressed. Although I have very good freinds they are all able bodied and so in some ways I feel very alone with my SCI. I am incomplete.

If anyone out there has similar thoracic injuries I would like to hear from you for shared support and inspiration.

I find this website amazing and enjoy reading the threads. I have learnt so much and am so much more positive and in control of my life

ps my profile pic is of me pre-injury

Hi there Pinkcloud'

I'm brand new here too--haven't even uploaded a pic of myself yet--lol.
Yup--I'm a T5-T6 incomplete lesion but unlike you I can't walk--am permanently disabled. 13 yrs now and going--hmmm--let's say --so so.Like the others who answered you I get a lot of pain too--it's there permanently and only controlled by drugs. Burning pain from the feet up and a lot in my buttocks where obv there's constant pressure from sitting.I can only explain it to people like it feels like being dipped into hot oil up to the chest.That and spasms which I take meds to control that too. If not I wouldn't be able to sit in my wheelchair. Actually--I'm just under the max dosage for spasms but still--if I touch my legs anywhere or put a hand under my knees to lift them it induces spasms.
Oof!--just cannot win!--Anyway--that's life!

Glad to see other people getting together and chatting about similar problems

Hi Gleno

Do you know why it hurts when there is pressure from sitting? I'm not quite got the grip of why this happens? I only get burning pain in my back luckily but thats a great way to describe the sensation. I've been trying to explain that for ages and never managed to put it in a way others can explain . May I ask if you have a manual chair? I find it so painful in the t7/8 region to push it with my arms - does that ease with time?

[pinkcloud]

jennyau, on 06 August 2010 - 02:20 PM, said:

Hi Pinkcloud,
Yes I was lucky to have my surgery through the back I have a kind of cross or T scar.My surgeon told me what happened was very rare and there had only been 3 surgeries the same in Australia in 20 yrs before mine and he had preformed one of them . I am just over 5 mths post op so for both of us its early days and I believe things will improve over time. I have been told by my rehab DR I am not to lift over 2.5 kg for the rest of my life My left side is weaker so I limp and and drag my ankle and foot /sometimes my leg just go from under me. I get neropathic pain burning in the feet and my bottom and that hypersensive electric thingy yet if you jabbed me with a needle I wouldnt feel it.I have spasms sometimes all day and night cold water is painful and if I sit for to long when I get up my legs spasm and almost take off on their own looks like I am doing the goose step.I have no feeling from the injury down but when I wake up my legs are in terrible pain.I self cath and am on a bowel program.Have you done any hydrotherapy?I finished my intesive rehabilation in July and the physio I am with does hydrotherapy with me its been great as I dont get the spasms in the water and am able to lift my legs more. Angela I get what you are saying about feeling like you are holding people back and people see you walking its very hard work and exhausting plus every day its a different issue bladder bowel pain ect. I have become very shy since I come home from hospital I am not sure why so its great to get together in a forum like this the people I have met here have a great attitude to life.

This description of symptoms matches mine. Except that cold water isnt painful - as I dont really feel cold and hot water until after I turn red. I too have had hydrotherapy with my physio and its fantastic. Its how I managed to get movement going. I would not have dared to try these out of water. I too have been told I cant lift heavy stuff - but to be honest after going thorough this back surgery I never want to lift again anyway

Jenny

[Angela250153]

Hi Pinkcloud

I can sure tell that my legs are somewhat disconnected from my brain. When I walk I have no sense of where my feet are so I have to look down at all times. Even then my feet don't always go where I want them to. I also have thise wide gait when I don't concentrate on my walking.

Despite everything I am very independent. Being single I really don't have much choice. I drive with handcontrols, go to a hydropool in St George's hospital, Tooting once a week and I do much of my own shopping sitting in the wheelchair with my big wicker basket on my lap. I put heavy shopping in a rucksack and lighter stuff in 2 cotton bags. Just to make it more fun and as a good exercise at home I have to climb 1 flight of stairs.

As for the burning I try to ignore it as best I can but off course it limits the distance I can walk. I recently started getting accupunture. I am lucky in that there are 2 GP's at my surgery who do this. After 4 sessions now I feel that things are improving a bit and I have been able to reduce some of my medication. I was on 1200mg Gabapentin now 900mg and 60mg Baclofen now 40mg.

Perhaps you could put your location in your profile though I gather you are in the UK. If so ask your GP about accupuncture in your area. It is available free on the NHS.

[pinkcloud]

Angela250153, on 06 August 2010 - 10:21 PM, said:

Hi Pinkcloud

I can sure tell that my legs are somewhat disconnected from my brain. When I walk I have no sense of where my feet are so I have to look down at all times. Even then my feet don't always go where I want them to. I also have thise wide gait when I don't concentrate on my walking.

Despite everything I am very independent. Being single I really don't have much choice. I drive with handcontrols, go to a hydropool in St George's hospital, Tooting once a week and I do much of my own shopping sitting in the wheelchair with my big wicker basket on my lap. I put heavy shopping in a rucksack and lighter stuff in 2 cotton bags. Just to make it more fun and as a good exercise at home I have to climb 1 flight of stairs.

As for the burning I try to ignore it as best I can but off course it limits the distance I can walk. I recently started getting accupunture. I am lucky in that there are 2 GP's at my surgery who do this. After 4 sessions now I feel that things are improving a bit and I have been able to reduce some of my medication. I was on 1200mg Gabapentin now 900mg and 60mg Baclofen now 40mg.

Perhaps you could put your location in your profile though I gather you are in the UK. If so ask your GP about accupuncture in your area. It is available free on the NHS.

Hi Anglea. I have put my location on now, was a bit wary at first because of internet safety, I live in Warwickshire (about 100 miles away from London).

I am so glad that I am not alone in that I have to concentrate where my feet are going. Mine turn inwards and my gait looses it when I am real tired. I push myself real hard thorough the pain barriers and can walk quite a distance on a good day (although when I do that I have my son with me who gives me great support, when hes around its easier to keep the tears streaming down my fac, from them burning pain. It also feels like someone is trying to saw my back in half in the thoracic area). I will speak to my GP about accupuncture before I try up-ing the Lyrica (Pregabalin) on your recommendation.

I think your doing so well with stairs - I can do them on a good day but I tread them as it seems my t-spine goes 'thump' on every step Mind you, that may be because I lived up 40 heavy steps in an very old building (300 years old) pre-operation days, when I didnt even know I had SCI. Two years of doing that must have had some kind of psychological impact on me

[jscott92064]

pinkcloud, on 05 August 2010 - 09:05 AM, said:

Hi all

A few months ago I had discectomy for t7/8 cord compression. 3/4 of my cord was being compressed. Although I have very good freinds they are all able bodied and so in some ways I feel very alone with my SCI. I am incomplete.

If anyone out there has similar thoracic injuries I would like to hear from you for shared support and inspiration.

I find this website amazing and enjoy reading the threads. I have learnt so much and am so much more positive and in control of my life

ps my profile pic is of me pre-injury

My husband had almost the exact same situation as you. He had cord compression at t7-8 and the type of surgery he had was this VATS surgery, which is where they use a video and come in through the side to do the surgery. We think the surgeon may have let his resident operate on my husband (not sure as he stopped talking to us after the surgery.) My husband is T7 complete. We don't know exactly what happened --think his cord may be contused. His surgery was November 20, 2009.

Feel free to ask me any questions. We are hoping for the best while taking care of today. You'll meet some wonderful people through this site and won't feel so alone.

[Angela250153]

Hi pinkcloud is is amazing for me to hear from someone who has so very similar experiences to mine. Though I live in SW London I have yet to meet anyone with a spinal injury like mine or anyone with one for that matter. I think the medical profession has a hard time understanding us inbetween ones

It's too funny I guess when I walk. I always try and concentrate on not taking too big steps but somehow it just doesn't always work especially with my right leg and I have to stop and pull it back or there is a danger of it collapsing.

My flat is on the first floor of a converted 3 bed house so the stairs are not very wide and I have handrails either side. In rehab they had a mock set of stairs and once I was ready they chased me over them time and again

It's great that you have such a supportive son.

One other thing it might be worth trying to find out if your nearest larger hospital has a hypro-pool. Where I am at St. George's Tooting they have the pool open 3 evenings a week for people to come and exercise in it. You might have to go for some physio first to be assessed and also if they have steps into and out of the pool they will want to make sure you can manage. I have to pay £5 for that but it is well worth it.

Edited by Angela250153, 08 August 2010 - 09:01 PM.

[pinkcloud]

Angela250153, on 08 August 2010 - 08:58 PM, said:

Hi pinkcloud is is amazing for me to hear from someone who has so very similar experiences to mine. Though I live in SW London I have yet to meet anyone with a spinal injury like mine or anyone with one for that matter. I think the medical profession has a hard time understanding us inbetween ones

It's too funny I guess when I walk. I always try and concentrate on not taking too big steps but somehow it just doesn't always work especially with my right leg and I have to stop and pull it back or there is a danger of it collapsing.

My flat is on the first floor of a converted 3 bed house so the stairs are not very wide and I have handrails either side. In rehab they had a mock set of stairs and once I was ready they chased me over them time and again

It's great that you have such a supportive son.

One other thing it might be worth trying to find out if your nearest larger hospital has a hypro-pool. Where I am at St. George's Tooting they have the pool open 3 evenings a week for people to come and exercise in it. You might have to go for some physio first to be assessed and also if they have steps into and out of the pool they will want to make sure you can manage. I have to pay £5 for that but it is well worth it.

Hi Angela

Yeap we sure are rare ones. Do they know what it is that caused you so much trouble with your back? Mine was from the riding accident. I was told that I have a lot of bone that is around the cord. And that I still have a bulging disc there - they just moved the part of it that was on the spinal cord. I have to wait for the disc bulge to go down with time. Is that what happened to you too?

I had my operation in Coventry by a Neurosurgeon.

I do hydrotherapy with my physio which I pay for. Luckily I know her personally and if it wasnt for her I wouldnt even be walking. She too had a SCI so she understands what it feels like. You are right its brilliant but dosnt it make tears come to your eyes when you make a new movement in hydo

I am hoping that it helps me loose weight too - I went into the operation at 8 and a half stone. I am over 10 and a half stone now and my arms are not half collecting some weight on them as I just cant lift much at all. Bingo wings? My arms are more like I have hit the bingo jackpot ten times over Has hydro helped control your weight (that is if you have any problems)?

Even though my surgeon was amazing, the after care was rubbish and I got no rehab on the NHS. I was just dumped into the community as they said my condition was rare and I wouldnt need physio etc. I paid to see a fantastic spinal surgeon and he said he would have sent me to a rehab unit for the size of my SCI. He wrote a letter to my neurosurgeon and I am in the process of getting referred for some rehab now but only a neuro rehab place as to travel to an SCI rehab unit is too far. Did rehab help you much to adjust to it psycholically too?

[Angela250153]

sheeesh pinkcloud those similarities are mindboggling. Apart from having always been accident prone i.e. lots of ankle twists and bad sprains falling and crashing on my knees, I guess being dumped by a horse and sumersaulting down the side landing flat on my back and trotting without stirrups on an extremely bouncy horse didn't exactly help

When I come out of the pool things aren't too bad until I put my trousers on. The rubbing makes my leg feel as if it is on fire so badly that it even dulls the nerve pain and I get a lot of spasms then.

My biggest problem is that I have zero balance. I cannot stand for more than a few seconds without holding on to something. So my best experience in the pool is that I can walk across in the deeper end without holding on to anything and recently I have been able to do the same in the shallower bit even though it does look like I have looked a bit too deep into the Also I have always been a good swimmer and initially when I tried it my legs would stop moving after 2 or 3 strokes. Now I can swim a bit better before that happens. Btw I use ankle weights in the water as it keeps my legs more steady and off course makes it a bit harder too

That was quite prepostrous of you neuro surgeon to say you didn't need rehab. Even if you were able to walk a bit after the op proper rehab would have been important.

Due to where I live and the hospital I first went to I ended up in a rehab facility that is mostly for diabetic amputees and I feel that I really should have had more than 1 hour physio per day. Anyhow in 3 months I went from not being able to stand to walking with crutches. Psychologically the rehab did not help at all as they were pretty clueless about spinal injuries. I guess the fact that I was discharged without a wheelchair says it all.

Edited by Angela250153, 10 August 2010 - 09:27 AM.

[pinkcloud]

Angela250153, on 10 August 2010 - 09:16 AM, said:

sheeesh pinkcloud those similarities are mindboggling. Apart from having always been accident prone i.e. lots of ankle twists and bad sprains falling and crashing on my knees, I guess being dumped by a horse and sumersaulting down the side landing flat on my back and trotting without stirrups on an extremely bouncy horse didn't exactly help

When I come out of the pool things aren't too bad until I put my trousers on. The rubbing makes my leg feel as if it is on fire so badly that it even dulls the nerve pain and I get a lot of spasms then.

My biggest problem is that I have zero balance. I cannot stand for more than a few seconds without holding on to something. So my best experience in the pool is that I can walk across in the deeper end without holding on to anything and recently I have been able to do the same in the shallower bit even though it does look like I have looked a bit too deep into the Also I have always been a good swimmer and initially when I tried it my legs would stop moving after 2 or 3 strokes. Now I can swim a bit better before that happens. Btw I use ankle weights in the water as it keeps my legs more steady and off course makes it a bit harder too

That was quite prepostrous of you neuro surgeon to say you didn't need rehab. Even if you were able to walk a bit after the op proper rehab would have been important.

Due to where I live and the hospital I first went to I ended up in a rehab facility that is mostly for diabetic amputees and I feel that I really should have had more than 1 hour physio per day. Anyhow in 3 months I went from not being able to stand to walking with crutches. Psychologically the rehab did not help at all as they were pretty clueless about spinal injuries. I guess the fact that I was discharged without a wheelchair says it all.

Angela, I feel so upset that you had had to go thorough limited rehab. I had hoped I was a isolated case. Diabetic amputtees? May have well have transferred you from the neuro ward to the general orthopaedic ward full of people over 70 years of age on average, like I was (mind you it was not so much that the nurses were clue-less there, it was they were clue-less and bullies. I have to say that the doctors were fantastic though).

The physio I am having has spotted my balace problem is neuro rather than muscle - she has asked me to go onto a balancing flat-ish ball thing (a pilates thing). She said its to help my brain talk to my legs again. And like you I too feel like I have more control in walking in water. If and when I get to the neuro rehab centre I'll let you know if they can give me any information about why we have trouble balancing.

I will also ask her about leg weights too, sounds like a good idea. You are brave I tell you. Thats real tough cookie work out.

For some reason my arms dont raise up - I can do it when I am lying down but not standing up. I can float and swim on my back - (that is kick my legs and use little motions with my arms). But I CAN NOT FLOAT OVER ONTO MY FRONT. My body just does not allow it, which I find real weird. Can you make your body do this? If you can let me know how you managed this please do.

As for the pain you have when you put clothes on - whow to say its even worse than nerve pain is awful. Mind you, I had something similar, when I had my carers wash my feet with a sponge, I would would jump to the other side of the room (slight exageration LOL) and so was the same when they tried to wash my back. My back and my feet felt extremely numb to the touch at the time as well which was weird. Thats calmed down so much now thanks to the Lyrica. So I think that must have been nerve damage. I'm not sure if thats the same for you. I pop to the information bit I saw on apparaylzed and I write it in the thread in a minute. My sensation was tiny in comparison to yours so I see if I can shed some light and hope on it for you

[pinkcloud]

Spasticity & Muscle Spasms - Angela this is the bit I found on this website - it helped me understand when I first read it

[Parachute]

jennyau, on 05 August 2010 - 10:25 AM, said:

I had a small prolapsed disc t5t6 and had a discetomy and spinal cord decompression my spinal cord was severly compressed and my surgeon is baffled to why my spinal cord compressed so much as the protrusion was very small.I am incomplete and am now able to get around my walking is still improving at this time.

Hi jennyau

Just wondered, how long have you been injured? I have been injured since March 29 2009. My injury was a compressed spinal cord too but not as bad as yours, as I had no surgery. I walk.

[Parachute]

pinkcloud, on 09 August 2010 - 10:31 AM, said:

Angela250153, on 08 August 2010 - 08:58 PM, said:

Hi pinkcloud is is amazing for me to hear from someone who has so very similar experiences to mine. Though I live in SW London I have yet to meet anyone with a spinal injury like mine or anyone with one for that matter. I think the medical profession has a hard time understanding us inbetween ones

It's too funny I guess when I walk. I always try and concentrate on not taking too big steps but somehow it just doesn't always work especially with my right leg and I have to stop and pull it back or there is a danger of it collapsing.

My flat is on the first floor of a converted 3 bed house so the stairs are not very wide and I have handrails either side. In rehab they had a mock set of stairs and once I was ready they chased me over them time and again

It's great that you have such a supportive son.

One other thing it might be worth trying to find out if your nearest larger hospital has a hypro-pool. Where I am at St. George's Tooting they have the pool open 3 evenings a week for people to come and exercise in it. You might have to go for some physio first to be assessed and also if they have steps into and out of the pool they will want to make sure you can manage. I have to pay £5 for that but it is well worth it.

Hi Angela

Yeap we sure are rare ones. Do they know what it is that caused you so much trouble with your back? Mine was from the riding accident. I was told that I have a lot of bone that is around the cord. And that I still have a bulging disc there - they just moved the part of it that was on the spinal cord. I have to wait for the disc bulge to go down with time. Is that what happened to you too?

I had my operation in Coventry by a Neurosurgeon.

I do hydrotherapy with my physio which I pay for. Luckily I know her personally and if it wasnt for her I wouldnt even be walking. She too had a SCI so she understands what it feels like. You are right its brilliant but dosnt it make tears come to your eyes when you make a new movement in hydo

I am hoping that it helps me loose weight too - I went into the operation at 8 and a half stone. I am over 10 and a half stone now and my arms are not half collecting some weight on them as I just cant lift much at all. Bingo wings? My arms are more like I have hit the bingo jackpot ten times over Has hydro helped control your weight (that is if you have any problems)?

Even though my surgeon was amazing, the after care was rubbish and I got no rehab on the NHS. I was just dumped into the community as they said my condition was rare and I wouldnt need physio etc. I paid to see a fantastic spinal surgeon and he said he would have sent me to a rehab unit for the size of my SCI. He wrote a letter to my neurosurgeon and I am in the process of getting referred for some rehab now but only a neuro rehab place as to travel to an SCI rehab unit is too far. Did rehab help you much to adjust to it psycholically too?

Hi pinkcloud

For your rehab, I recommend a book named 'The Whartons' Back Book, Jim & Phil Wharton with Bev Browning. The book is excellent. Look on Amazon. The book was around £5-6 when I bought it. I actually already had the book , when I got injured.


Parachute

[pinkcloud]

Hi Parachute

I remember you from SIA - have not been on there for a while (aka Missy Anne). I remember the acheivements that you have done and I sure will look at that book thank you, as I think it will encourage my mindset. I have just googled it, had a look at a few pages and it talks the language I like to hear. Positive athletic talk. Thanks for that. And you was right, I am working so hard with my walking and the hard work and pain does pay off. I get back on SIA soon.

[/quote]

Edited by pinkcloud, 12 August 2010 - 09:22 AM.

[pinkcloud]

[/quote]


My husband had almost the exact same situation as you. He had cord compression at t7-8 and the type of surgery he had was this VATS surgery, which is where they use a video and come in through the side to do the surgery. We think the surgeon may have let his resident operate on my husband (not sure as he stopped talking to us after the surgery.) My husband is T7 complete. We don't know exactly what happened --think his cord may be contused. His surgery was November 20, 2009.

Feel free to ask me any questions. We are hoping for the best while taking care of today. You'll meet some wonderful people through this site and won't feel so alone.
[/quote]

Thank you for your reply Jscott

My operation took 5 hours and was done in the middle of my spine and I have a backwards 'C' as my scar. He said only two surgeons in the county can do it this way and that I am lucky as its the best way to operate with less pain after wards. Not sure about that but if thats true I sure do feel for anyone who had it another way

Any positive words to help me thorough the days when it just gets too tough would be great. And any ideas how to get my head around the 'tight band that crushes the chest at t7/8 level'. Its that part thats real getting in my way as regards to pain. I wonder if your husband has ever had an injection of pain relief to try and help it there? I was very anti-injections but over two years of the same pain and I am so tired of it now I am willing to look at other options. On Angelas advice I am going to try accupuncture too.

Now for the real personal stuff:
Also I cant feel when I need to go to the toilet - I just get a pain in my back,where I cant walk anymore its that bad - and I sit on the toilet and go. I also know when I have to pass bowels as it feels like 'there is a mini earth quake' going off in my head, I feel dizzy, sick and have a feeling I am going to die. Incontience nurse said its part of autonomic system. I know it usually only affects other SCI normally but I wonder if your husband has it too? I had to re-train myself to use the toilet and it was hard work. As it pulls on the back muscles sooooo much. But I sure was not going to continue to use catheters etc without putting up a fight. And I am winning I am proud to say. Thing is it stops me going anywhere that hasnt a toilet near by.

[pinkcloud]

I would like to say thanks to you all for replying. I am feeling less lost in the world now thanks to your replys

Edited by pinkcloud, 12 August 2010 - 09:30 AM.

[jennyau]

Parachute, on 11 August 2010 - 07:17 PM, said:

jennyau, on 05 August 2010 - 10:25 AM, said:

I had a small prolapsed disc t5t6 and had a discetomy and spinal cord decompression my spinal cord was severly compressed and my surgeon is baffled to why my spinal cord compressed so much as the protrusion was very small.I am incomplete and am now able to get around my walking is still improving at this time.

Hi jennyau

Just wondered, how long have you been injured? I have been injured since March 29 2009. My injury was a compressed spinal cord too but not as bad as yours, as I had no surgery. I walk.

Hi Parachute,
It was on February 28th this year for the most I have trouble with timeframes and sometimes I even forget which month I am in now but I remember the date because it was the day before I was due for annual leave from work I was originaly diagnosed with restless leg sydrome because my legs were jumping around a few days later I couldn't walk I dont know why they said it was that because I had no feeling from the chest area down.I went to another hospital luckily as the emergency dept DR was right onto it.Do they know why your spinal cord compresed?

Jenny

Edited by jennyau, 12 August 2010 - 10:20 AM.

[Angela250153]

Hi pinkcloud yes i was also dumped in an orthpaedic ward with little old ladies with broken bones. I guess the mistake was that I had my friend take me to the wrong A&E when I could barely walk. We went to Kingston hospital from where I was tranferred to Atkinson Morley which is only abt 20 min drive away from Kingston. A few days after the op I was taken back to Kingston. Had I gone to St George's A&E which Atkinson Morley is a part of I probably would have gone to the Wolfson Centre which is a neurological rehab.

I must say you are very brave in the way you are fighting your corner with the NHS. It really is sad when people have to deal with something this serious and you can't get the support you need. Within the various PCT's they don't ask what is best for the patient they just stick you where it's most convenient for them.

As for your problems with your arms that is probably because your injury is a bit higher than mine. Fortunately I always had good upper strength which has turned out to be a blessing.

I also have the usual bowel& bladder problems. Mine is that I can feel both but I have to get to the loo within a couple of minutes or I will have an accident. It is all ok as long as I am in my comfort zone and monitor how much I drink. Going to friends houses who have upstairs loos was a nono and any longer trip also. A couple of years ago I had my rehan consultant refer me to a urologist who referrred to a nurse who taught me how to insert a catheder. I can get them now presription and use them about once or twice a month. It was bliss when I drove to Germany in April as I did not have to worry about finding a loo in time and did not have to change 3 times in the way.

[pinkcloud]

jennyau, on 12 August 2010 - 09:57 AM, said:

Parachute, on 11 August 2010 - 07:17 PM, said:

jennyau, on 05 August 2010 - 10:25 AM, said:

I had a small prolapsed disc t5t6 and had a discetomy and spinal cord decompression my spinal cord was severly compressed and my surgeon is baffled to why my spinal cord compressed so much as the protrusion was very small.I am incomplete and am now able to get around my walking is still improving at this time.

Hi jennyau

Just wondered, how long have you been injured? I have been injured since March 29 2009. My injury was a compressed spinal cord too but not as bad as yours, as I had no surgery. I walk.

Hi Parachute,
It was on February 28th this year for the most I have trouble with timeframes and sometimes I even forget which month I am in now but I remember the date because it was the day before I was due for annual leave from work I was originaly diagnosed with restless leg sydrome because my legs were jumping around a few days later I couldn't walk I dont know why they said it was that because I had no feeling from the chest area down.I went to another hospital luckily as the emergency dept DR was right onto it.Do they know why your spinal cord compresed?

Jenny

Hi Jenny

Whow my legs also jumped around - and my left eye and face was spasming too. One doctor said my eye spasmed because I wore eye make up (what!! thats nearly as good as my GP saying it was due to anxiety . I think your doctor calling it restless syndrome takes the biscuit though ).

I went to see an opthamologist who sent me for a brain scan. It was normal. He explained my muscle spasms were due to a problem in the spine.....and were called fascilations.Two months later MRI a good surgeon found SCI on an MRI .

[pinkcloud]

Angela250153, on 12 August 2010 - 11:50 AM, said:

Hi pinkcloud yes i was also dumped in an orthpaedic ward with little old ladies with broken bones. I guess the mistake was that I had my friend take me to the wrong A&E when I could barely walk. We went to Kingston hospital from where I was tranferred to Atkinson Morley which is only abt 20 min drive away from Kingston. A few days after the op I was taken back to Kingston. Had I gone to St George's A&E which Atkinson Morley is a part of I probably would have gone to the Wolfson Centre which is a neurological rehab.

I must say you are very brave in the way you are fighting your corner with the NHS. It really is sad when people have to deal with something this serious and you can't get the support you need. Within the various PCT's they don't ask what is best for the patient they just stick you where it's most convenient for them.

As for your problems with your arms that is probably because your injury is a bit higher than mine. Fortunately I always had good upper strength which has turned out to be a blessing.

I also have the usual bowel& bladder problems. Mine is that I can feel both but I have to get to the loo within a couple of minutes or I will have an accident. It is all ok as long as I am in my comfort zone and monitor how much I drink. Going to friends houses who have upstairs loos was a nono and any longer trip also. A couple of years ago I had my rehan consultant refer me to a urologist who referrred to a nurse who taught me how to insert a catheder. I can get them now presription and use them about once or twice a month. It was bliss when I drove to Germany in April as I did not have to worry about finding a loo in time and did not have to change 3 times in the way.

Oh Angela the NHS really mucked up with my care. I do have good grounds to take them to court for so much muck up's with leaving me so long in agony. I worked in hospitals and see how long court cases drag on and I didnt want to waste any more of my life re-living the trauma. I therefore put it in my mind that money from a law case would not bring back the years and time wasted on wondering if I was having a stroke/heart attack/need to go to a mental health clinic for hypochondriac syndrome -all symptoms caused by being ignored by the GP for so long with my cord compression. Thats why now I am brave with the NHS because I beleive that all you say is 100 per cent correct. And I will try my best to get the help I need due to neglect.

As for the toilet thing, I got something called a she-wizz. A little device that means you can go to pass urine like a man, if you know what I mean . I cant cope with a catheter and even though I was meant to use one on prescription to drain residual matters I just cant bear one - so yeap its invention is great (old mountain climbing mates of mine use it when camping too. So if its any help to you, I think you can buy them from camping shops if not of your GP

I'm glad you have got good upper body strength. I told my physio you use ankle weights for swimming and She gave me a wrist weight. Thought I was going to pass out from the pain of using them but today I feel more loosened up muscles. Thanks for the advice. Onwards and upwards

[Parachute]

jennyau, on 12 August 2010 - 09:57 AM, said:

Parachute, on 11 August 2010 - 07:17 PM, said:

jennyau, on 05 August 2010 - 10:25 AM, said:

I had a small prolapsed disc t5t6 and had a discetomy and spinal cord decompression my spinal cord was severly compressed and my surgeon is baffled to why my spinal cord compressed so much as the protrusion was very small.I am incomplete and am now able to get around my walking is still improving at this time.

Hi jennyau

Just wondered, how long have you been injured? I have been injured since March 29 2009. My injury was a compressed spinal cord too but not as bad as yours, as I had no surgery. I walk.

Hi Parachute,
It was on February 28th this year for the most I have trouble with timeframes and sometimes I even forget which month I am in now but I remember the date because it was the day before I was due for annual leave from work I was originaly diagnosed with restless leg sydrome because my legs were jumping around a few days later I couldn't walk I dont know why they said it was that because I had no feeling from the chest area down.I went to another hospital luckily as the emergency dept DR was right onto it.Do they know why your spinal cord compresed?

Jenny

Hi jennyau

I was injured playing rugby, making a tackle. How good is your walking? I may be able to pass on some exercise advise, depending on how you are at the moment.


Parachute

Edited by Parachute, 12 August 2010 - 10:17 PM.

[jscott92064]

Thank you for your reply Jscott

My operation took 5 hours and was done in the middle of my spine and I have a backwards 'C' as my scar. He said only two surgeons in the county can do it this way and that I am lucky as its the best way to operate with less pain after wards. Not sure about that but if thats true I sure do feel for anyone who had it another way

Any positive words to help me thorough the days when it just gets too tough would be great. And any ideas how to get my head around the 'tight band that crushes the chest at t7/8 level'. Its that part thats real getting in my way as regards to pain. I wonder if your husband has ever had an injection of pain relief to try and help it there? I was very anti-injections but over two years of the same pain and I am so tired of it now I am willing to look at other options. On Angelas advice I am going to try accupuncture too.






My husband used to feel he was stuck inside a cardboard tube (just in the chest area). That went away on its own after about 5 months. So I can't be much help there. I have some subliminal cds that I was playing for him regularly at night --relaxation, positive thinking, overcoming fear and worry --maybe that helped? I still play those on times when things get tough. Sounds like the ocean - they work for me too! Also, this lady just told me about another subliminal cd --call Pain-ease? I will check it out and let you know.









Now for the real personal stuff:
Also I cant feel when I need to go to the toilet - I just get a pain in my back,where I cant walk anymore its that bad - and I sit on the toilet and go. I also know when I have to pass bowels as it feels like 'there is a mini earth quake' going off in my head, I feel dizzy, sick and have a feeling I am going to die. Incontience nurse said its part of autonomic system. I know it usually only affects other SCI normally but I wonder if your husband has it too? I had to re-train myself to use the toilet and it was hard work. As it pulls on the back muscles sooooo much. But I sure was not going to continue to use catheters etc without putting up a fight. And I am winning I am proud to say. Thing is it stops me going anywhere that hasnt a toilet near by.
[/quote]











My husband gets autonomic dysreflexia when he is either constipated or has some bowels that are ready to come out. It sounds like he gets some similar feelings to yours. Since we're getting personal..(ha ha) there are some days when he's in alot of pain and I have done his bowel program for him in bed. I can feel stool just inside his rectum ready for me to pull out. So I do that and then stim him more to get what I can out and he feels better and the dysreflexia goes away. (When I spoke about pain in the previous sentence, that is the excruciating nerve pain that he has just started to get and not the dysreflexia that comes when he is late at cathing or he has to poop. Initially, he would get a headache in his right eye and so he would know when he had to cath. He no longer gets headaches.

I imagine cathing must be harder being female.

As for the bowels, he hasn't been able to figure out a regular time that will work for him and I think he needs to do that. He passed out on the toilet once when he was trying to poop on his own. Dr. says there's some nerve he was sitting on that will do that --a beagle nerve???

He does have to cath regularly, though he's had a few accidents more because of a prostate infection. That seems to have cleared up.

Feel free to ask me ANYTHING. There's nothing too personal I won't answer for you.

Edited by jscott92064, 12 August 2010 - 11:05 PM.