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

▶ Reply to This

Replies to This Discussion

Permalink Reply by BDrake on December 19, 2008 at 11:02am: Mo-
try posting this question here in the dystonia group:
http://community.wegohealth.com/group/dystonia

There are some on there that have had DBS, I am not one of them. I hope you will get all the answers you are looking for and if not, put on the right track, so that you can find help.

Welcom,
Becky; ▶ Reply to This

Permalink Reply by Mo on December 19, 2008 at 3:14pm: Backy,

thanks.

posted in the dystonia group. only thing is, it's a comments area and not a "fourm" where one can post new topics. but that is ok... better than nothing. and i realize you were just trying to point my into a better direction where i might garner more responses.

Mo; ▶ Reply to This

Permalink Reply by Angie on January 9, 2009 at 4:28pm: Hi Monica,

My tremors are very much like yours and I too am investigating Gamma Ray proceedures. Please let me know how you are doing? Angelicaveech@msn.com; ▶ Reply to This

Permalink Reply by Mo on January 11, 2009 at 6:23pm: as well.. i would appreciate to hear in your journey too angelica!

it has been a 25 year nightmare of gettting any neuro to do something other than medications!

monica; ▶ Reply to This

Permalink Reply by Angie on February 4, 2009 at 7:40pm: Hi Monica,

For me it has been 15 years or so of s l o w tremors just in the head and in the last few years spread to my arms, torso, legs and sometimes voice. I have tried all kinds of meds and combonations of meds, and am just comfortable with Clonazapan .05mg 2 or 3 times a day but that is not working as well as it was. So, I am researching GAMMA KNIFE SURGERY because I have read so many positive things about it.
We'll see if I qualify after my MRI on the 23rd.
Thanks for including me, Angie; ▶ Reply to This

Permalink Reply by Mo on February 4, 2009 at 8:25pm: angie,

i have been chasing this for almost 26 years now...meds, eastern and western med on and on and on. meds dont work and klonopin was hell for me to get off of, when u are ready to get off klonopin let me know first...denied dbs twice, and now a facility that i wrote a letter to that was highly recommended for gamma knife and finally got ahold of them, connected with gal i was suppose to speak to, 2 months later and 6 phone calls later all unreturned calls to me after being promised i would get a call back to tell me they no longer do gamma knife for movement diseases!!!!.. wtf does a person gotta do to get fixed? sorry for my foul language but i am at my wits end... i have done this and that and this and that for years and not much has helped... if anyone knows a top notch gamma knife center in california, please let me know... i will be following your journey as well angie. thanks for the share...

signed,

beyond mad and frustrated with the entire system,

Monica; ▶ Reply to This

Permalink Reply by Angie on February 4, 2009 at 8:29pm: Monica, I have a "bundle" computer/telephone system which means I can call you for free if you are in Canada, Hawaii or the Mainland US. If you e-mail me yr number I will call you and we can talk. There is a specific Gamma Knife of the pacific here, and, one in Seattle, WA. and, there are more on the mainland. Have hope~

Angelicaveech@msn.com; ▶ Reply to This

Permalink Reply by Angie on February 16, 2009 at 2:35pm: Moncia~ where are you? I tried calling twice and got an answering machine. I will call you later today, K?
Did you get all the paperwork from Dr. Young's office? I got it on Saturday and am learning some new information we can share when we chat, as I am not clear enough to elucidate on a Forum and chance confusing anyone.

Forging ahead~ Seattle? Honolulu? Virginia? One baby step forward, rightieoh?

Angie; ▶ Reply to This

Permalink Reply by Mo on February 16, 2009 at 4:00pm: angie.. i was out of town with folks visiting sister and niece. my head tremor during a storm on way home was off chart.. i cannot take this anymore. i called seattle twice and southern cal twice.. socal msg machine, no call back. and no, no one has sent me any paperwork because no one is returning calls to get this GK ball rolling. btw.. my sister is coming back tonight from HI not last Tuesday.. i will be home today (monday), feeling a bit under the weather and the weather here is crazie, rain rain rain.. we need it tho. did you get my private message regarding seattle and socal frustrations? this is beyond unacceptable and ridiculous.

Mo; ▶ Reply to This

Permalink Reply by Angie on February 17, 2009 at 12:09pm: Mo~ Glad we chatted on the phone yesterday. Now that the 3 day weekend is over you may get some results. 1 step forward 2 steps back-- a dance. Talk to you soon. Get rested after that awful scary experience on the road!! Yikes.
Angie; ▶ Reply to This

Permalink Reply by Mo on February 17, 2009 at 2:47pm: angie.. thanks for the call. keep me posted on ur GK journey, I havent heard back from socal yet, I will give it until tomorrow (wednesday).. here is the link to the article we had discussed on the phone...

http://today.msnbc.msn.com/id/29183743/page/2/

Monica

Permalink Reply by Angie on February 17, 2009 at 7:38pm: MONICA~ Thanks so much for the article link. It is the same one I dug out of our paper Recycle bin while you and I were chatting.
I shared your information w/ Carmen about Virginia doing 6K GK and Seattle doing 3K but we have been playing phone tag. Naturally since she is in Savannah Virginia is closer, so---. I am going to call Virginia tomorrow and ask them specifically a question you brought up. If the electrodes from DBS are placed in the Thalamus and that stops the shaking then why when GK dystroys the Thalamus does it not stop the head shaking?

You have some million dollar questions and I feel so fortunate that you are hanging in there patiently until we forge through this journey together. Take heart MO~ there is Light at the end of the tunnel--,and, it is NOT a train!! LOL

Angie talk to you soon~