who can help out a person with a need for brain surgery for the disease dystonia?

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i fell off an excercise ball, ending up with spial damage, not being able to swallow and dystonia. I sold everything i had to get therapy to stay alive but now i found out i need more treatments including genetics, therapy, brain surgery and surgery of tendons and muscles.
It's always good to do a lot a research before doing surgery, especially brain surgery. Brain surgery is quite an extreme thing to do for dystonia. Are you seeing a dystonia specialist or just a general neurologist? There are a number of other treatment options. Don't let your doctors scare you, especially when you're feeling perhaps a bit helpless and down. Take charge of your body and do research on your own. You can always have the surgery - but take a deep breath and do not rush into it. See a dystonia specialist. Most other doctors don't know enough about dystonia conditions as such conditions are often rare. A specialist will be at the forefront of what can be done and will not just shove you into surgery.

A good place to contact is Columbia Presbyterian Hospital in New York City. They are at the forefront of dystonia research. Check out the website : http://www.nyp.org/health/dystonia.html

Also read up on research at:
http://www.dystonia-foundation.org/

Don't give up. It will get better. Believe in your own strength. Take control of the situation. Do NOT let it control you!

Also: You mention something about genetics. There is no such thing as genetic treatment for dystonia. It does not exist. There is no chromosome or chromosomal marker that can be identified as a dystonia carrier. You definitely need to see a dystonia expert. Otherwise you'll end up as a guinea pig. Dystonia can be alleviated and managed. Botulinum toxin (BOTOX) works great for many, many forms of dystonia. It could work for you too. Brain surgery should be and IS the LAST and FINAL resort. When ALL other options are COMPLETELY exhausted only. It's a high risk operation. Now you've got me worried. Please do not rush into anything, ok?
And lastly: this is not a disease. It is a condition. There is a difference. You're not sick.  (+ info)

What is the probability of other children inheirting dystonia?

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If dystonia is a genetic disorder there is different probabilities of getting the disease based on the parents genetics.

1. If both parents are carriers, the child has a 25% chance of having the disorder, and a 50% chance of being a carrier. There is also a 25% chance that they will have 2 dominant genes and will not pass it on or have the disorder

2. If one parent is a carrier and the other is not, then there is no chance that the child will have the disorder.

3. If one parent has 2 dominant non-disorder genes and one has the disorder, the child will not have the disorder but will definitely be a carrier (100% of the time).

There are different situations. Can you please elaborate on your question.  (+ info)

do you know about dystonia? What is the best procedure to cure it?

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It's involuntary movements of the muscles.
Drugs, such as anticholinergics which act as an inhibitor of the neurotransmitter acetylcholine, may provide some relief. Clonazepam, an anti-seizure medicine, is also sometimes prescribed. However, for most sufferers their effects are limited. Botulinum toxin injections into affected muscles have proved quite successful in providing some relief for around 3-6 months, depending on the kind of dystonia. The injections have to be repeated and around 15% of recipients develop immunity to the toxin. There is a Type A and Type B toxin approved for treatment of dystonia; often those that develop resistance to Type A may be able to use Type B.

Surgery, such as the denervation of selected muscles, may also provide some relief. Recently, the procedure of deep brain stimulation has proved successful in a number of cases of severe generalised dystonia.  (+ info)

Are there any massages to relieve neck pain from dystonia?

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My neck always hurts, how do I relieve the pain?
What triggers your dystonia?  (+ info)

I need to find or develop a safe chat area for Dystonia -our area has been hacked?

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Hi
I frequented a chat area for dystonia and other movement disorders, it was wonderful till we got "assaulted" if you will and the room was shut down.

I need a room where people can be booted or banned, for real with similar controls that most game sites have for excessive chat and such, making it a free exchange for a rare disease area.

I unfortunately can not trust the site to come on line again with proper controls, but have found for many the comfort and information exchange for a rare disorder is extrodinary.

Please just help point me in the right dircection, and not to wemove.
There is an excellent forum that you can enter two ways. I have it saved in favorites and not bringing it up for some odd reason. You can search Brain Talk Communites Support forums and scroll down to Dystonia...you can try this url:
http://brain.hastypastry.net/forums. This is created by the Harvard Massachuetts Hospital and has numerous conditions and diseases on it. I use it for my Myasthenia Gravis which at this point is very stable. Let me know if you have a problem with it. Also have you gone into yahoo groups and searched in there?

Hope this helps. I do highly recommend the Brain Talk Communities. I checked and there are quite a few people in that forum.

Jean, I noticed you added me to your fav contacts. You can contact me at [email protected].  (+ info)

Does anyone have natural ways to raise dopamine levels? I am having a bad spell of my dystonia.?

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Evennn typing is veyr difficult right now. mylegs are copmletely in spasms and my showlder and finggers are alsossstuccccccking.
sex  (+ info)

Does The Bachmann-Strauss Dystonia & Parkinson Foundation partake in any kind of animal testing?

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I am wondering if they use animal testing.
Probably not directly themselves, but they fund a lot of research, some of which would definitely incorporate products which have been animal-tested.  (+ info)

How long does dystonia last?

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How long does dystonia of the face cause by Reglan last?
No one can predict that. I have seen it last six months. I have also seen it become permanent. I hope things go well for you.  (+ info)

What's the best job for someone like me inflicted by Dystonia "handwriter's cramps?

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I resigned from my job and I'm going to Dubai 2 weeks from now. Hoping to find a career. With this disease, do i have an option?
use voice activated software. look at Hawkings...he's in a wheel chair.  (+ info)

Any experts out there on cervical dystonia?

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I need to find out if whiplash would have caused this condition in my case, since it involves a auto accident 1 1/2 years ago. I suffered from musculoskeletal strains/sprains in the cervical, thoracic and lumbar spine areas, as well as a annular bulge at C5-6. I have gotten worse over time with severe muscle spasms in the spine and aggravation of pre-existing fibromyalgia, on top of other medical problems including degenerative disc disease. I was diagnosed with cervical dystonia yesterday and received marcaine injections and will return in three weeks for more, probably with Botox or Myobloc.
I'm not an expert, I'm a nurse and have taken care of people with various and sundry neuro-muscular diseases. From what i have read this is a condition that has a strong genetic component, but often the onset of symptoms is related to trauma of the neck and head. look at th link below, click to see the main site and click on causes/genetics.
The first reply was wrong, it isn't just stiff neck, but causes some strange posturing. Do talk to an attorney if you haven't already. did your drs. talk to you about the trauma trigger? were they willing to go on record, if they linked our trauma with the condition?
Just because you had an inborn propensity to a certain condition does not change that the trauma triggered the symptoms.
Injections have been used. Also depending on your age, remissions have occurred temporarily and some permanently. Read all you can to understand what you have. A lot is being done , but many treatments are experimental, make sure you know which are being used, do your homework.  (+ info)

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