Gamma Knife~Dystonia Essential Tremor

Hello,

This is my first post to this group. I belong to several other sites for movement disorders.
I have suffered from ET (Essential Tremors) for 25+ years but just recently have received 3 different dystonia diagnosis: myoclonus, idiopathic and cervical. The one who diagnosed me with myoclonus dys. also said i may have both ET and Myo Dys. It started in my head and constant head shaking. 3 or so years later i got the trunk right arm/hand (dominant) tremors random). If i am overheated, back tremor and if i overdo, leg tremor. it has progressed since this started.

I have tried various med and alt. treatments. I am now on sinemet and artane and doesnt seem to be working to well. I have been denied dbs twice, wasnt bad off enough (really, couldnt even write) and the other said to risky.

I have been studying dbs and gamma knife on and off for a year. Has anyone here had dbs or gamma knife for et/dystonia? if so, could u please share in your experiences good or bad. I cant keep going like this. I cant obtain independence, i live with folks and when they pass on and I am not cured or max controlled with tremors i am screwed. i have been shouting out to the neuro world/docs for 25 years and not one has nailed the right help.

Monica

Tags: dbs, dystonia, gamma, head, knife, shaking, tremor

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Replies to This Discussion

Permalink Reply by Angie on February 17, 2009 at 10:33pm: MONICA~ Here is a quote from the Gamma knife Center of san Deigo~ "What Disorders Can Gamma Knife Treat?
Tumors within the head from a primary site elsewhere in the body: metastatic tumors.
Tumors originating within the brain itself or its coverings: pituitary tumors, acoustic neuromas, certain gliomas and meningiomas, etc.
Abnormal blood vessels: arteriovenous malformations.
Also specific centers within the brain can be destroyed to treat pain, tremors and other functional disturbances.
Trigeminal neuralgia "

G'night, may tomorrow be filled with positive thoughts and results~ A; ▶ Reply to This

Permalink Reply by Mo on February 17, 2009 at 10:57pm: angie...

thanks for the share... i am aware of these findings with GK. did you get my message in your inbox?

M; ▶ Reply to This

Permalink Reply by Angie on February 17, 2009 at 11:48pm: Nope, no message---let me look again. I am communicating with someone in Virginia at the GR Center that says GRK is ususally effective on the torso and limbs but not on the head tremors>: Hummmm, now, what would the point of that be if I cannot go backward and choose DBS to stop the head tremors/ perplexed but not defeated in Honolulu<:
I tried to call you a little while ago and the phone just rang and rang.
baby steps~~~A; ▶ Reply to This

Permalink Reply by Mo on February 17, 2009 at 11:59pm: i wish they would stop saying it is ineffective for head tremor, there are some success stories and i am really losing my patience living with this crap and neuro-surgeons comments. when did u try to call???

~Mo; ▶ Reply to This

Permalink Reply by Angie on February 19, 2009 at 1:38am: Monica,
Can you guide me to the success GK stops head stories please? Por favor. Angie; ▶ Reply to This

Permalink Reply by Tracey on March 9, 2009 at 11:20pm: I have suffered with a tremor in my hands at least, not to mention my head since I was a child & messed around by the NHS in England for over 10 years, until I was finally diagnosed properly almost 2 years ago with Cervical & Myoclonus dystonias & Essential Tremor of the hand. I was initially diagnosed with the ET over 10 years ago when a consultant asked if anyone else in the family suffered anything similar. One of my aunts who was in her 60's at the time had been diagnosed with ET, so it was decided that's what it was. I was put on anti-Parkinson drugs, though had already been prescribed anti-depressants during my 20's for what they said was depression & a trapped nerve in my neck. It makes me wonder if these made it worse over the years, but of course I will never know now. I was also told I was the one who was causing the depression, when it is the condition that does that.
Since my final diagnosis, I have been having Botulinum Toxin injections every 3 months, which do help some. I also take Ashwaganda Ayurvedic tablets, which help with the depression & 5-HTP, which appears to control the terrible mood swings I was experiencing around ovulation & pre-menstrually. I am now 43 & remember having at least a hand tremor from the age of 8 or 9, possibly even earlier, though doctors told my Mum I was just highly strung.

Have you thought of trying the injections? I likened them to homoeopathy which I am also a fan of, as treating like with like. The Ashwaganda has brought back my own self-confidence. I live on my own for most of the time, too, so really understand what you are going through. I had to travel over 200 miles the other week just to go for my injections, which I couldn't have even thought about doing for the most part of last year until I started taking them : ) Hope this helps some.; ▶ Reply to This

Permalink Reply by Mo on March 10, 2009 at 12:59am: tracey,

thank you for sharing in your story that sounds all to similar to mine. we are about the same age to. whilst yours started at age 8 or so, mine at age 17. i have tried botox injections. first time of one vial lasted 5 months or less with some control. 2nd time was upped to three vials and last about 4ish months. 3rd time 3 vials and lasted 3 months. each time it was ok but not satisfactorily in comparison to price and control. at 1k a pop per vial it is rather expensive. also, as u can see the efficacy was wearing rather thin and lasted shorter periods of time making botox not worth it for me. i also flew to montana, i live in calif, to see a top rated energy worker chiro and homeopathy/naturopathy for about a month 3-4 times per week. their help made me better for about 2 months and tremors back with a vengence! i have tried many different avenues. thanks for the share.

Mo; ▶ Reply to This