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hey ramona. i dont have dystonia like some movement specialists think i have. i was originally diag with ET, then dystonia by others, now back to that diag as of recent. didnt we meet on dbs yahoo group btw?
There is a group specific for those who have dystonia, too. It is DBSforDystonia.
Blessings
Ramona
i am candidate for gk.. but dr young is on fence about it.
botox was not that effective for me because i was being treated for cervical dystonia... what the movement specialist thought i had... i think i have been a guinea pig of trials and sorts...
So, what do you NOW think about gamma knife surgery ? Are you a candidate for that procedure..?
Yes, there are more problems with DBS than people want to admit. If you have to go back to taking botox, medications to handle symptoms then I do wonde...
beka...
i have reviewed and seen these questions some time ago and i have researched dbs till blue in the face. as I mentioned in my original post... dr. young is on the fence about gamma knife.
i viewed your two short clips on alex since I was ...
I have read them. Sounds like your appointment went well. At least itmust be arelief to a degree mentally to know that you HAVE a Diagnosis. YES ?
OK, what surgical options have been offered - I know the DBS . What did he say about Gamma Knife ?
...
hey beka.. see in comments section on my update thanks.
hello all and checking in and to answer beka's ?....
the drive to socal (southern calif) to see dr. young was about 6-7 hours. was it worth it? hell yea!
the first day much rain and fog... going home was sunny.
I visited with dr. young for 1.5 ...
Comment Wall (15 comments)
- At 7:55pm on October 2, 2009,
beka said…
- Good Luck with your appointment on October 15. As I had said several weeks ago, I would be scaling down on my activities within dystonia, but YOU are not forgotten. Nor have others forgotten YOU. I think this appointment should have been made along time ago. I do hope that it goes well for you.
beka ( at work..)
- At 7:23pm on August 12, 2009,
beka said…
- Then I really think you should consider DBS - isnt that an option for you ?? I dont want you giving up...
beka
- At 4:18pm on August 12, 2009,
beka said…
- Your comments are not being deleted however certain circumstances involving previous events will not be tolerated by anyonein any commnity anymore. Feel free to post. I am surprised that you have not sought out Gamma Knife - I had thought that you were going for the procedure. What happened ??
- At 9:49am on August 3, 2009,
nan828 said… - how do i get your email
- At 9:48am on August 3, 2009,
nan828 said…
- itslinda828@optonline.net
- At 9:46am on August 3, 2009,
nan828 said…
- i cant figure out how to email you, can you email me
- At 11:50am on August 2, 2009,
nan828 said…
- mo i need help with klonpin with. no one in my area seems to be able to help me. one dr want to use depakote. the other wants me to go to an out patient substance abuse prog. i saw that you had info about how to get off. can you give it to me?
- At 12:50pm on February 18, 2009,
Angie said…
- I do not give up easily not get easily discouraged, so, let me focus specifically on the success rate of GK with head tremors.
Time to meditate and let my brain have a much deserved rest~ A
- At 12:31pm on February 18, 2009,
- Mo~
Not sue at this moment, I spent 7 hrs online researching yesterday and am a tad weary. I found out that GK
seems not to help hear tremors. Back to the drawin board. Not discouraged, just tired~
xoA
- At 8:53am on February 18, 2009,
Ellen S said… - Mo, I completely understand - no problem. I'll send you a note with my personal email address, okay? Unlike so many other disorders, Migraine is highly personalized. What works for one will not for another. That's one reason it is such a tough ride. Management is possible though, and every patient deserves to live a life free of pain.
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- More about me (my health interests and reasons for joining WEGO Health)
- 42, tremor for 25 years, has progressed.
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