Re: neck problems - dystonia

[David Rohrbaugh <DDRohr@xxxxxxx>]

I have neck problems also.  Tortacollis.  I have a Botox injection every
three months of 250 units.  I was at 300 units but experienced some of the
problems your mother exhibits.  It sounds to me like she was given too much
Botulinum. I recently went off Artane because of it's side effects on
cognitive functions.  However, Artane helps deal with the Tortacollis and so
again we have a good news bad news story in PD meds.

The big problem with the Botox injection, beside the high cost (mine cost
$1400 per shot), is that you will develop anti-bodies  rendering the
treatment ineffective.

The effectiveness of the Botox treatment is clearly dependent on the Dr.
giving the shot. My first neurologist did random injections in the neck
muscles.  The first time worked great. The second time nothing. I now have a
neurologist doing the injections who uses sensing equipment with needles to
determine what muscles are rigid and need treatment.  Much more effective
method.

I get a shot every 3 months but usually the last month is difficult.  I use a
massage therapist who works on my neck once a week and she helps extend the
time between shots.

I also went through biofeedback therapy for the tortacollis.  It proved
effective in relaxed conditions but when I was under stress I could not
overcome the muscles with this method.

Hope this helps

David Rohrbaugh  DDROHR@xxxxxxx