No announcement yet.

Help me: spasticity untreatable. Looking for specialized centre

  • Filter
  • Time
  • Show
Clear All
new posts

    Help me: spasticity untreatable. Looking for specialized centre

    Happy new year you guys!

    my problem with spasticity has been every increasing and is now reducing my quality of life very very substantially.
    i need your help to find a clinic or hospital ( preferably outside of the U.S.) to try to find a solution. I cannot - and will not!- continue living like that!!!!

    i have had many surgeries in 2014 to try to fix it:
    - replacement of baclofen ITB pump
    - replacement of pump catheter
    - move of catheter above level of injury
    - removal of syringomyelia through surgery

    i have tried oral (baclofen, sirdalud, lyrica and rivotril)

    nothing has had any lasting effect.

    a recent injection of baclofen inside the dura at l2-3 has given me soft legs, tho no effect on the core which is also spastic and painful.

    i am 42, t6 Asia a, otherwise healthy, very active and sporty since injury in 2009. Am unable now to do anything due to this horrible constricting, unbalancing, painful, and horrible spasticity (with clonus, ads etc) starting at trunk and all the way to the legs,