5 replies to this topic

[megatrig]

Ok everyone in breif .....................


I'm 20 years down the road. Very fit C5/6 complete Tetra. AND I WAS HAPPY and well NOW........ SERIOUSLY CLOSE TO WELL "THE END"

3 YEARS AGO muscle spasm begins to get worse.

previously controlled with 60mg Baclofen and 20 mg Diazepam a day.

I have done ALL the drugs including Sativex .. no joy

baclofen pump INSERTED AS IT SEEMED THE SENSIBLE STEP!! .... 18 months of pure hell for me!! Taken out 17th July 2007.

Botox A and B .. neither work!! The injections were to my quadreceps .. musle spasm stems from here!


What next?? This seems all I have heard of or know about!

Am I completely f.....??

I am in terrible pain in my legs as I have sensation but no motor power. I don't sleep as my legs are so uncomfortable and hurt so much.

Spasm then travels all through my body into my hands locking me out completely!

I have lost all independance as I can't even sit up in the mornings I am so locked out with spasm! I can't dress. I can't drive anymore. I am almost a prisoner in these 4 walls! No joke!

What do I do?

Add to that the insertion and removal of the pump weakened the area around my ribs so my rib and hip now make contact causing .. well agony!! BEWARE ANYONE CONSIDERING ONE! This has just added to my nightmare situation!


I really am desperate!

Terribly depressed!

Fed up with banging my head against a wall!

Any ideas really appreciated!

[E-DOG]

It's a rather permenent solution, but I've heard certain tendons can be cut to relieve spasms but I know nothing about it. Ask yer doc or wait for reply here. Someone will know something.
E

[cate]

Sorry to hear that you are having a rough time, I regret do not have any answer for you, have your dr's or nurses suggested anything, Do you think that perhaps massage would help a bit.
Thoughts are with you, but that is not a lot of help
Cate

[megatrig]

Actually cutting the Tendons or nerves to "take out" my Quads would seem now to be the "best" solution! Drastic yes ... but what I am left with by the look of it!

Thanks everyone !! Any advice help is much appreciated!!

[Stickman]

Have you had an mri done lately? when my spasms got bad, my mri shows that my cord is tethered (flattened) by scar tissue were they did surgery. Maybe something is messing with yours and could be surgically helped. Just a thought. My spasms are so bad from the waist down that Im considering surgery again do de-tether my cord.

[megatrig]

well my MRI loks all clear!

I'd look at intrathecal Phenol as a useful way of achieving what you want.

HOWEVER!

I have sensation and intrathecal Phenol will take all feeling as well as completely paralysing you from the injected site down!