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02-19-2014, 08:45 PM | #1 | ||
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I haven't been out here in a very long time, and I have changed names twice for personal reasons, hence the low number of posts.
I saw a neurosurgeon last week for possible cervical spondylosis surgery...C3-C7. The decision is not now...a good thing. What I discovered though was that he also does DBS (Hershey Medical Center, PA). He saw my tremor; legs, arms, body. We talked for a long time, far less than for my cervical issue, about DBS. Not for him to convince me, but just about DBS. We talked about my advocacy with clinical trials until all the PPPers got to sick to go on. Certainly was nice to come across a doc who took the time to have such discussions. Oh and he is not the first doc to ask, Did you drive yourself here? To which I always say, Yes. But I don't add, who do you want to drive me here? I live alone and the friend who was to come with had back out that morning due to the lack of elec...the big ice storm I am also trying to find a new MDS. Two hours into Baltimore for a 9am appt DOWNTOWN just doesn't work for me anymore! He told me the docs at Johns Hopkins were not that good; been seeing Univ of Maryland since 2005. There are no docs at Hershey...bummer...so close. So, my is: If you have had DBS because of tremor, what was the "last straw" that caused you to make the decision to have DBS done? Carolyn p.s. If you live in or near Carlisle PA, please contact me by PM, thanks. No, I don't live there, but close. Oh how I have forgotten how gun the icons are! |
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02-20-2014, 12:57 AM | #2 | ||
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Member
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Quote:
Not sure I can answer your question as I have non tremor PD. I had akinesia, rigidity, dystonia and subsequently dyskinesia however I had DBS 10 yrs ago with much success. Perhaps ask on one of the DBS websites. I used to find the yahoo site were a fairly well informed group. Am almost certain you'll get a reply from someone with tremor who has the answer. Best wishes. |
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02-21-2014, 08:38 AM | #3 | |||
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Member
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I simply had enough. I couldn't stand having the tremor any longer. I couldn't eat, sleep, walk, talk, or brush my teeth with out the tremor being a major pain in the butt. If driving a nail through my head would have done the trick, that is what I would have done.
For me, DBS did the trick. I am back doing all the things I love to do without the tremor and I feel great.
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02-22-2014, 01:07 PM | #4 | ||
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Member
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Thanks for the input.
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02-26-2014, 10:11 AM | #5 | ||
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Junior Member
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Hi,
I have tremor dominant PD for nearly 17 years. I understand very well your situation. At the end of the first 9 years I had a unilateral DBS at VIM. The result was and is a miracle. Tremor never showed up on that side any more. Here I will give you a link where you can find more info on DBS. https://groups.yahoo.com/neo/groups/DBSsurgery/info In the group we discuss all DBS related issues. You will be welcome. |
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