6 replies to this topic

[sporty]

I have only just found this site, and have spent hours reading some of its contents. I was diagnosed as suffering from cervical spondylosis 18 months ago and underwent a cervical laminectomy in March 2010 but they do not know as to the cause of my spinal chord narrowing. The operation has 90% stopped the clonus I was having but the spasms in my legs (mainly the right)have increased in number and intesity, my walking has deteriorated and now need two sticks to walk no more than 50yds, I have a scooter and quad bike to get around on , and hand controls on my car even though my problems are with C6/7, it is my lower back and legs that have suffered, not my arms/hands.
On seeing my neuro surgeon a few weeks ago , he suggested a baclofen implant ( I was on a low dose before the operation but came off them as was suffering bad side effects), I am still considering it, but asked him if I could talk to someone else who has or is experiencing my problems , things like burning feet, and an intense itching in the lower groin area as well as the other things mentioned. He replied that he did not know of any support groups , as this has come on fairly quickly , I was in a complete spin , I have had to get someone to run my business as I get terrible bouts of tiredness, and my poor wife ( who has been great) has to help me about on my 'bad' days.
Thanks for letting me put down my history and ask if anyone else is in the same boat

Edited by sporty, 12 January 2011 - 11:52 PM.

[S&W Winger]

Hi Sporty, welcome to the forums...you have come to the right place...for info, camaraderie and support...

Good to hear you were surfing around...did you find the threads on Baclofen and the pump? Several around...and many Love their pumps...as for me, I was all set to get one, but had second thoughts and cancelled...my concerns included the pump clogging/malfunctioning, being at the mercy of the MD, and being "stuck" with it, though of course it could be removed, as well as others...at this point, I am still on oral Baclofen with mixed results and plenty of sleepiness...still waiting to see, but really doubt I will go the pump route...not to say that it would not be a viable solution for you...

There are a few threads about folks who walk. recent also...I can barely sit at times...

Have you tried Lyrica for the neuropathy? The burning, itching, etc., neuro symptoms such as these were lessened with it for me...but again, the price is sleepiness...

You are doing very well by reading up and I wish you the best and hope you could lessen your problems and increase/preserve your mobility...

Edited by S&W Winger, 13 January 2011 - 12:16 AM.

[sporty]

Thanks, after the Neurologist finished with me his final words were ' oh well nothing more I can do ', left me shocked, but the neuro surgeon still wants to see me every 6 months as well as a consultant at Stanmore, but it is the ' not having a label'that still baffles me, and of course a small piece of me thinks I will be back to 'normal'one day, then reality sinks in, just typing these words makes me feel better as I know that someone else can know how I feel

[Tetracyclone]

Sporty-

I still expect to be "back to normal" soon, after 2.5 years. Acceptance of reality is always iffy for us humans...


Spinal Cord Narrowing sounds like a reasonable diagnosis to me. We just need words on things, so accept whatever words you have.

Welcome.

[pinkcloud]

Hi sporty

I'm in the same boat too. It was scary as heck when the surgeons said the way to help me is risky surgery. But it looks like that isnt even a consideration now. Although its scary as heck when the surgeons say 'we dont know what will happen, all we can do is make you comfortable' is hard. Very hard.

However, even when they do know lots about certain conditions, things can still go wrong. Because all of us humans and sci is different.And its this thought and this thought only that keeps me sane And from my experience at least one person on here knows something, nomatter how bizarre the symptoms. Burning and stabbing feet - yes thats me - when I have a full bladder and bowel this is me warning sign.

Baclofen pump, now I dont have experience of this meself yet I have heard a wonderful consultant at sheffield hospital called Mr McCelland does. He looks after me and he is one of the most amazing consultants I have ever met. He really cares. And someone correct me if I am wrong but I heard he was the first to put a baclofen pump in, in this country. If patient choice service allows, I suggest a referral if you can travel.

[mellowgator]

hi sporty,

welcome to the forum. i'm not in the same boat as you but i am a c6-7.




mellowgator

[sporty]

Thanks for all the comments, have seen consultants recently,as well as weekly trips to physio, standing getting better but walking is harder now, have at last accepted a wheelchair for small trips, longer ones with a scooter, and the benefits are that I do not tire so quickly. Still finding it all a strange thing to cope with but am determined not to let it get me down.