Cure for Dystonia that noone talks about
Been researching for a cure,not meds, for my wife's CD. Much written about two things being done at the JHO Institute for Minimally Invasive Neurosurgery in Pittsburg,PA. 1. If you have a condition where blood vessels cross and compress cranial nerves this could be causing your CD. Nerves for this condition are the spinal accessory nerve and upper cervical nerves. Moving the blood vessels causing this pressure relieve the pain and movement in many patients. 2. Reduced spinal cord canal by bony spurs or disc material might also be putting pressure on nerve roots. This Cervical Stenosis procedure might also help those with arm/neck problems . See the web site DrJho.com and make your own evaluation. We sent our MRI film for evaluation last week. Hoping to hear back soon to see if she might have any of these conditions. She had fusion surgery 14 mos ago with no positive results from the pain or CD. Head turns left. Maybe the fusion surgery was not necessary and canals are still narrowed and/or she has compressing blood vessels that the neurosurgeon did not know how to look for. Operation was on the C3/4 and C4/5. Hope this might raise some questions to others and maybe the cause and effect for someone's CD. Noone mentions this as another avenue. I only read of denevreation,botox and DBS. Why??? Bud
Replies to This Discussion
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Permalink Reply by Jeannie on -
Hi Bud:
First of all I am new to this board and I just joined today after reading your story.
I am from Pittsburgh, Pa and back in 1992 Dr. Jho did a surgery on me called nerve decompression. He was assisted by Dr. Janetta. At the time of my surgery my right shoulder was glued to my ear and my right shoulder pulled forward. I could not move my head to the left without being in a lot of pain.
The surgery consisted of making an incision in the back of my neck about 6 inches long. They went in and found that there was blood vessels entwined. They put small pieces of teflon coated material between the blood vessels. I was in the hospital for 7-8 days. After the surgery it brought my head up to an almost perfect straight position. .
This lasted for two years, which brings us up to 1994. I was able to go back to work full time. Then in 1996 and again in l997 I was hit from behind in auto accidents. I started to have some pulling again and Dr. Janetta thought that the teflon may have moved. In 1999 I had surgery again, and they did not find anything had moved. I started on Botox injections and continued getting them until my body became immune to the botox. I have tryed everything from massage therapy, accupunture, pressure point therapy and I even went to see Dr. Arce in Jacksonville, Florida to see if I was a candidate for the denevreation ( which I wasn't) . In 2003 I had the DBS surgery done on one side and in 2008 I had the other side put in. They told me I really need to have the two to balance things out.
So as of right now I am still going through the programming. They are still trying to reach the optimum settings.
Dr. Jho and Dr. Janetta are both very excellent doctors. If I can answer any more of your questions, please feel free to ask away.
Sincerely,
Jeannie
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Permalink Reply by beka on -
Hello Bud - Thanks for bringing up this topic. I personally have never heard of this form of surgery. I don't know why it is not discussed or hasn't been. I have taken a look at the site and wrote the Institute for more data pertaining to the outcomes of the surgery for ST.
From the www.DrJHo.com site :
Spasmodic torticollis is a condition of extreme neck muscle spasm in which the patient's head and neck become twisted in an unnatural manner. Spasmodic torticollis has been treated with microvascular decompression of the spinal accessory nerves, the upper cervical nerve roots, and/or the brainstem. Improvement of symptoms has been observed in most patients within a two year span following surgery. Surgical outcome has been excellent in 50% of patients, who show drastic alleviation of their symptoms. Of the remaining patients, 25% experienced significant improvement while the other 25% did not die.
I do know that it is not discussed in the setting of dystonia and neurosurgery at their annual meetings. May be it should be ? Are we missing something here ? I hope to hear from the Insitute !
beka
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Permalink Reply by chyvonneb on -
Hi,
I have been researching info on Dystonia for over a year. I had never heard of Microvascular Decompression until doing a search on the computer today. Then, I decided to put those words into a search on WeGo Health. Wow Beka, you've talked about this. I might call my neurologist and ask about this procedure. I'll share what I find out.
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