[dwb]

After 3 1/2 yrs post injury has anyone lost sensation throughout and functionality after doing great 2 1/2 yrs after injury

[Simon]

Sounds like a rising injury, sometimes cysts develop around injury site usual many years post injury but go back to your unit and get scanned.

[Lucky]

How old are you....if you're "gettin on" a little, that could be why ?

[russ1]

I think simon has probably hit the nail on the head. Have a google on syrnix or syringomyelia which is the correct term.

[Joed]

dwb...

Any changes in function/ability should be investigated. Don't make the same mistake that I did in thinking a loss of strength/function is just a normal continuation of the process of the disability. Our conditions are different, but I would think the same cautions would apply.

And there are doctors out there who would have you believe that it's simply a natural progression of your disability. Hey, somebody has to graduate at the bottom of the class in medical school, right? If a doctor doesn't share your concerns, then run, don't walk...away. (Or in our cases, wheel very, very fast ) And find one who does.

Good Luck to You!

[dwb]

Thank you all for replying.. I am a c3-4 while playing hockey..Just turned 50.. Gained strength and functionality for first 2 1/2 yrs.. Independant at home, driving even made 110 meters in Canadien crutches before baclofin pump supplimented by oral baclofin..... Miserably managed by Dr. for 8 months.. Lost muscle and ability to ambulate in walker..Back in gym 4 days a week with trainer and gaining gross muscle strength. 180 lb leg presses,12 lb curls BUT I can not walk as of yet and worse of all is the loss of sensation throughout especially in my hands. I have no tactile sensation making it hard to hold utensils or anything smooth. In addition I have lost strength in right hand.. All of this and I am in significant pain...

[mttb14]

Hi,

Ask to see a neuro-surgeon or neurologist, ask for MRI scan, my husband was almost a quadriplegic because he had discs pushing into the spinal cord, they operated and chipped away some of the bone inside the discs to allow more spinal fluid to flow around the cord. His cord is flattened on the left side at C5 and C6 so he is an incomplete SCI. I know this might not be causing your problems, but it is worth a try. Our spinal rehabilitation doctor refered John back to Neurology, the other doctors didn't offer any help or suggestions, they were just leaving the situation get worse and doing nothing about it. Thank god for our Dr Baker, he treats you as a person and deals with the situation as a whole, but he is the best doctor we have ever seen. He is regularly accused of going outside his field, but he keeps getting proved right and I suppose if you have dealt with all aspects of SCI and really paid attention to the people and the differences in how different people are affected, you can go outside your immediate field. Apart from which the spinal cord affects so many parts of the body and causes so many different responses from different parts of the body.

John still has major problems, but at the moment he can still walk and use his arms and legs, even if every step he takes is like excruciating tooth ache and he has trouble straightening his arms and legs because the tendons behind his knees and in his elbows are really tight. Spasticity and spasms are real problems and he knows he will eventually have to use a wheel chair as things are getting progressively worse, but as you know you have to fight this every step of the way. Chronic pain is a terrible thing to have to live with, and there are so many different forms of pain, all of which seem to be affecting him.

Anyway, don't settle for what your told by one doctor, fight and keep fighting until you are happy with the answers you get, its your body and you know it best.

Good luck in your search for answers.

Maria