7 replies to this topic

[luckycharms]

I have been paralyzed since 1994. At that time I was involved in a traffic accident where my back was broken at T-12 and L-1 was crushed. After my doctors performed the surgery and placed 2 rods, hooks, and bone graph they told me that I didn't have any spinal cord damage, that my paralysis was caused only by nerve damage...the doctor's exact words were, "your nerves are a jumbled up mess." I have some feeling below the point of injury, more on the right side than the left but none of it is really good. I can manage use the restroom normally although I can't feel either and do not have any control...when I have to go I have to find a toilet immediately. I can't feel anything below my thighs (feeling there is slim also, can feel some touch but nothing hot or cold). All the time my lower legs feel as if they are "asleep" but its only on the inside, they feel like they are moving to me but of course they aren't. I can walk a very little bit with full leg braces and a walker and am very unstable and very slow and most of the time don't bother cause its just too hard and of course seems very dangerous to me. Ok I think I have explained my situation as well as I can.

My main question is, how can nerve damage cause practically the same symptoms as SCI? And when my doctor said I had nerve damage could he have meant Cauda Equina Syndrome and just not said that since I wouldn't have understood what he was talking about anyway?

Does anyone else have the same kind of symptoms as I do?

[juls]

Sorry i can't help you with any of your questions but have you thought of seeing a different spinal surgeon and asking him these questions?? I hope you find the answers you're looking for

[Gary Anderson]

Lucky Charms

Meet your soulmate! I was injured in a train crash 18 yrs ago. I fell of th seat on impact and landed on my a*** on the floor damaging the nerve ends that exit the cord - the cauda equina nerves.

In answer to your questions. Yes! cauda equina CAN cause symptoms similar to SCI. Also, the nerves regenerate at 2mm per month, so that is why we can improve where an SCI does not. At the end of about 2 years you have as much back as you are going to get. However, it is not unknown for nerves to continue improving at a later date.

As I say, I am 18 yrs now and things have improved dramatically to the extent that I am able to get around on 2 sticks - for all intents and purposes looking like an AB.

Re the bladder. That is the same as me. I use a condom cath "as a security measure" however, I know when I want to go and everything has feeling/sensation as in a normal person.

If you type cauda equina into the search engine you can get some great info on it there.

As regards the walking. I only "found" my legs after going through functional electrical simulation and other treatment. However, it is well worth pursuing as if you can walk it will do you good. I would return to my doctor and ask him about cauda equina and also ask about treatment to improve your walking. I was lucky enough to be in USA on an exchange trip and had initial treatment the same as they give at Christopher Reeve Centre. As Simon says on here if you don't use it you lose it and I am determined to hold on to it for as long as I can.

Hope you continue to improve.

[dom]

hi lucky charms and gary!! we can make up a trio as you know i am cauda equina [horses tail] damaged these are the nerves that come from the cord and are socalled because they resemble the hairs on the tail of a horse,gary you say they grow 2mm but i was told they don't neccesarily join up at the end of their growth? i am post 4 years and have'nt had any real improvement since the start but luckily i was'nt too bad to start of with i can walk but have very weak legs, and can feel my bladder full,but have a locked sphincter when i have a bowel movement i use a lubricated glove to start the process but can use gravity and a sucking in of abdominal muscles to have the desired effect

[Lee]

I have very very similar problems to you and mine was caused by a misdiagnosed spinal tumour which was left for three years untreated. My spinal cord damage is due to the tumour growing insdie the spinal column squashing the cord and giving me a host of problems since but i wont bore youwith the details. i also have various good days and bad to the senstation side of it and the toilet side of it which is worse in the cold weather so try to wrap up warm. Sorry this isnt really an answer to your question but when i found this site i was really glad others had very similar symptoms that i could ask and share problems. It makes you think your alone doesnt it.

cheers lee

[luckycharms]

Gary Anderson, on Aug 25 2006, 12:34 AM, said:

Lucky Charms

Meet your soulmate! I was injured in a train crash 18 yrs ago. I fell of th seat on impact and landed on my a*** on the floor damaging the nerve ends that exit the cord - the cauda equina nerves.

In answer to your questions. Yes! cauda equina CAN cause symptoms similar to SCI. Also, the nerves regenerate at 2mm per month, so that is why we can improve where an SCI does not. At the end of about 2 years you have as much back as you are going to get. However, it is not unknown for nerves to continue improving at a later date.

As I say, I am 18 yrs now and things have improved dramatically to the extent that I am able to get around on 2 sticks - for all intents and purposes looking like an AB.

Re the bladder. That is the same as me. I use a condom cath "as a security measure" however, I know when I want to go and everything has feeling/sensation as in a normal person.

If you type cauda equina into the search engine you can get some great info on it there.

As regards the walking. I only "found" my legs after going through functional electrical simulation and other treatment. However, it is well worth pursuing as if you can walk it will do you good. I would return to my doctor and ask him about cauda equina and also ask about treatment to improve your walking. I was lucky enough to be in USA on an exchange trip and had initial treatment the same as they give at Christopher Reeve Centre. As Simon says on here if you don't use it you lose it and I am determined to hold on to it for as long as I can.

Hope you continue to improve.

I don't think I made the whole bowel/bladder thing clear enough. I noticed you said you have the same feeling/sensation as a normal person, but I don't. I can tell when I need to go (usually) and can go normally but I can't feel either at all. When I went through rehab they were having me use catheters and get on the bowel program and I did both for some time but all along I didn't think I really needed to and just did it becasue they told me that was what I had to do. After a short time of doing that and getting really sick of being on a "schedule" and taking up so much time to do it I thought I'd try to manage without and have found it works for me. I don't always go as often as I should and sometimes more than I should (especially after my trip to Egypt this summer where the food caused everyone to have diarrhea).

As I said previously my accident happened 12 years ago and I haven't had any change since that time. Right at first maybe, but I was so drugged up its kind of hard to tell now. I was in rehab for a couple of years where they had me doing the routine range of motion exercises and walking with full leg braces and a walker, but I found it very difficult to balance on legs that I couldn't feel. I had enough movement in my upper thighs that I could take "steps" and not just swing both legs through but I was very unstable and relied heavily on my arms and walker to keep me up. With a lot of effort and time I could walk for a good distance (such as a lap around my house). Over the years I began to slack off because nothing ever changed and I was always afraid of breaking something. I gradually slowed down on the range of motion as well. I guess I'm pretty lazy Anyway, I thought I was getting stretched out since I was standing and walking daily but I gradually started to stiffen up and now I cannot lay flat. It happened so slowely that I didn't realize it was even happening but now it seems nearly impossible to get stretched out. Sometimes it seems like it would be easier not to feel my hip area then I could stretch without any pain! One last thing I noticed on here is that a lot of people seem to have spasms quite a bit but I haven't had any. Have you or anyone else had any in similar circumstances? I just wondered if I don't have them because of not having spinal cord damage? Does that sound plausable? Not that I'm complaining, just wondering. Thanks all for your help

[ruth]

From what my docs told me, the spinal cord stops at your waist (about t11/t12). If you have an injury below that, its 'nerve damage' not sci.

The big difference is that we dont get spasms. Other than that, its all about your level. Your level is the top of the nerves (cauda equina). I'm a bit lower down (so I have a bit more feeling and more movement in my legs).

I'm guessing Gary is lower down still (seeing as he can walk - I did about 4 years physio and never managed to get rid of the full leg calipers, dont walk at all anymore)

Have a look at Simon's spinal column pictures and explanations. That may enlighten you a bit?

[jane]

me too - i had a benign tumor on my spinal cord at c4/5. i can tell when i need to go loo but need to go immediaely and can't feel anything - bowls well don't work too well and again, can't feel anythingh.


i have no sensation on my right side to pain / heat / cold but full movement although my right leg muscles spasm and tire quickly.

my left hpyer sensitive and not a lot of movement - and i can't tell where my leg is from below knee. muscles in leg spasm and tire quickly too.

i can walk with crutuches short distances and use a chair other wise. My neurosurgeon said my nerves will recover -and they did in first 4 months but none for last 8 months.