14 Months after DBS-Dystonia
 

Hello forum.

I just wanted to update the forum on how I am doing post surgery. Some of you may recall prior to DBS my on time was down to 20 minutes and I was mostly wheelchair bound. After the the neuro stimulator was turned on I was immediately able to walk and was 100 % on time. It was like a miracle had happened. I was even asked if I wanted to be on TV show "The Doctors".About 7 months post surgery I started feeling tingling in my feet. This was in March of 2015. It slowly got worse and than quickly by May spread to both calves. Dx was Dystonia. It is very painfull. I was treated with Botox injections in May with no relief and again in August no relief. I was put on Zanaplex 3 2mg perday which made me tired.Thus my neuro switched to Baclofen 5 10mg per day which gave me mental fog. I take several other medications which I am sure have added to the problem. My next Botox injections are on Nov 11. Living with this pain sometimes in just the calves ,other times in the feet and other times in both. When I had the DBS the electrodes were not targeted for Dystonia because I had none. I am scared to drive the car or go to the gym. STRESS makes the symptoms worse.
Sleep makes them go away but when I awaken my toes cramp.I hoping that the the 3rd round of botox or some other medication will work. I am also very anxious and short of breath when the cramping is very bad.
Can anyone offer advise or experience? I did not expect this and told that focal Dystonia rarely spreads to the entire body. I could not imagine what that
would be like
Thank you for your replies.
Damon

Hi Damon,
If it was me i'd up the levodopa dosage.
I get dystonia when I've been unmedicated for any length of time.

P.S.
 

Sorry Damon,
Forgot to mention I too had I think it was approx. the first 12 months post DBS without any antiparkinson meds.
As the yrs have rolled by I have had the dystonia return though not nearly as uncomfortable and distressing as it was before and only in toes whereas before DBS it was also in my back, neck and shoulder blades.
Thankfully that hasn't returned!
Like I said in previous posting plain old Sinemet taken more frequently or with an increased dosage is in my case what resolves dystonia in my toes.

14 mos post DBS- Dystonia
 

: )Madeitup TY.

I never had Dystonia prior to DBS. My sinemet has been reduced by over 50% in one year to 9 1/2 25/100 I inferred that you had Dystonia prior to DBS?

Dystonia
 

I found this post on one of the Parkinson's forums sometime ago and saved it to my notes (don't recall know which forum was it):

" You can try several things. I would suggest trying only one at a time, and try it for at least three days to insure it is or is not working. First, try the supplement: magnesium (at least 250 mg twice a day). Second, try ice packs on the offending muscle group. Third, try taking gabapentin (350 mg by prescription). Fourth, try sinemet 25/100 mg by prescription. Fifth, try a TENS unit. All of these worked for me at different time. MM"

I have occasionally bad cramps in my calves and bottom of my feet but didn't try any of these suggestions, yet.