Hi folks,
I have a spinal cord lesion which could be PPMS or radiation damage. I have come to the conclusion that I will never know the true answer and have to live with forever in limboland!
Anyway I have spasticity in one leg (mainly calf and quads)
I am currently on baclofen 40mg a day and I still have a stiff leg.
I have tried tizanidine which put me to sleep.
I have had a baclofen pump trial and that made my good leg and normal arms all floppy BUT did reduce the stiffness in my bad leg very well.
I tried botox although I am a bit suspicious that it wasnt done properly as the guy didn’t use an EMG machine. Also they only injected one of the calf muscles (gastrocimus) and not the soleus muscle and the physio said this was the most spastic.
The FES foot drop system cant fight against the calf spasticty either. I have been told it would work really well if the calf muscles would just relax.
The muscles are also huge - too big to wear the boots I wore last year.
I have been told to stretch and stretch etc. I saw a video on youtube were a doctor was talking about putting a lower leg in cast to stretch the calf muscles - has anyone had this done? I bought myself a foot night splint to wear at night. I put it on when I go to bed but alway wake up with the muscle screaming in pain. So i take it off and This is my only real problem and am grateful for that but I somtimes think I could walk better with the legs that Oscar Pistorius has!
There is an operation performed by a neuro surgeon in the states (Dr Justin Brown) for San Diego called selective peripheral neurotomy in which the trim the nerves so that the muscle gets a more normal amount of stimulation. He has got people out of wheel chairs and walking again after this procedure and I am tempted to pay him a visit. My neuro had never heard of the procedure.
Do anyone else have any advice for me which would be greatly appreaciated.
Moyna xxx