Re: neck problems - dystonia

[Benny Min <Benny.Min@xxxxxxxx>]

Thanks much, David, for your information.  My undertanding, too, is that the
shots are expensive.  I will relay your very informative feedback to my mom.
-Benny
email: Benny.Min@xxxxxxxx

>X-UIDL: 814465017.005
>Date:         Mon, 23 Oct 1995 10:09:35 -0400
>Reply-To: "Parkinson's Disease - Information Exchange Network"
<PARKINSN%UTORONTO.BITNET@xxxxxxxxxxxxxxxxxxx>
>Sender: "Parkinson's Disease - Information Exchange Network"
<PARKINSN%UTORONTO.BITNET@xxxxxxxxxxxxxxxxxxx>
>From: David Rohrbaugh <DDRohr@xxxxxxx>
>Subject:      Re: neck problems - dystonia
>Comments: To: PARKINSN%UTORONTO.BITNET@xxxxxxxxxxxxxxxxxxx
>Comments: cc: Benny.Min@xxxxxxxx
>To: Multiple recipients of list PARKINSN
<PARKINSN%UTORONTO.BITNET@xxxxxxxxxxxxxxxxxxx>
>
>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
>
>