having DBS surgery next week

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eeasters
Posts: 1
Joined: Wed Jan 21, 2015 5:01 pm

having DBS surgery next week

Post by eeasters »

Hi, Im Elaine and I have Orthostatic tremors and eccentric tremors, I have had both for years, but was misdiagnosed for many years as having vertigo, but after seeing several neurologists and going to Mayo clinic I have been correctly diagnosed, and have been told I am a candidate for DBS surgery, I have heard it works well with the eccecentrial tremor but I am wondering if anyone has had it done for OT??? I am schedule for surgery next week, and now I am having second guesses, but I know I have to do something because I see it getting worse daily, The meds I am on make me sick and I am really in hopes of getting off of some of them, I know there is no cure, But I want my independence back....
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: having DBS surgery next week

Post by gloria »

Elaine: Your question " I am wondering if anyone has had it done for OT?" If you go to the top of this page on the left hand side you will see a black strip, click on SEARCH and type in DBS and that will take you where you can read different experiences with that procedure." Please keep us posted on whatever decision you make and I wish you well. Look forward to hearing from you. Gloria

PS: It would be very helpful if anyone else has had any experience with DBS to report .
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Had DBS surgery January

Post by renaely »

Ok, so half the struggle is over. I've had DBS implanted on one side (Jan). Programming took place a few weeks ago. My right side is about 80% improved I would say, and we are still tweaking. The surgery isn't near as bad as you'd think. I was ready to go home with the holes in my head by the next morning and within just a few days, you don't need pain killers.

The battery was inserted into my chest the week following, which included a new hole in my head and one in my neck, but you get to go home immediately. It turns out gravity hurts...lol. After a couple weeks, it wasn't so bad and they only gave me enough pain pills for 1.5 days. We're going to be talking about that before my next side is done.

I can tell the tremor is significantly better, but I hope to have better news after the other side is done. Being as I have both OT and dystonia (which hurts like hell) in the left leg, I don't expect miracles until we electrocute the other side of my head.

P.S. What I said earlier about Beta Blockers being awesome, ignore if you are about to have blood tests, you should avoid these drugs at all costs prior to CBC panels. I suddenly looked like a diabetic with renal failure and my WBC was 16,000. It also adversely affects platelet count (3 weeks later). I nearly got my surgery rescheduled again.
gloria
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Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: having DBS surgery next week

Post by gloria »

renaely: Thanks for reporting in and wish you contiuned good results.....Gloria
molly
Posts: 11
Joined: Wed Mar 02, 2016 8:08 pm

Re: having DBS surgery next week

Post by molly »

I have read the posts regarding DBS. Does anyone have any feedback on the outcome of the procedure. Medicines are not working for me. I have discussed this procedure with my specialist.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: having DBS surgery next week

Post by gloria »

Molly: If you are thinking of having DBS and you have read all the input of DBS on the website why don't you ask your specialist if he knows people who have had DBS and if you can contact them personally with questions about the outcome of their procedure. Gloria
molly
Posts: 11
Joined: Wed Mar 02, 2016 8:08 pm

Re: having DBS surgery next week

Post by molly »

I have discussed this subject with my specialist and he does not know of anyone. Just thought I would ask
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: having DBS surgery next week

Post by gloria »

Molly: At this point perhaps you need to see is a neurologist who has done DBS on people with OT and discuss your thoughts with (him or her). Gloria
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: having DBS surgery next week

Post by renaely »

Tried messaging, but it keeps getting stuck in my outbox.

Hi Molly, I've had it done on both sides and while the process is lengthy and uncomfortable, especially since you have to go off all your meds prior to the surgeries, it works. I just had my initial programming for both sides in May, and while you might come away from that feeling a little stoned and like you just had a stroke, I can't recommend this procedure enough. I can do things I haven't been able to do in over a year. (And I can't quit grinning, it's life changing).

Ren
Joan Sheila
Posts: 2
Joined: Sun May 07, 2017 3:10 pm

Re: having DBS surgery next week

Post by Joan Sheila »

Thanks Ren for that as I'm in process of analysing all info before making decision to have DBS IF CONSIDERED suitable. Would have to go to UK as not done in Ireland
Joan Sheila
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: having DBS surgery next week

Post by gloria »

Hi! Joan: Please let all of your interested OT friends here on the Forum know if when and where you make a decision to have DBS surgery.
All the best, Gloria
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: having DBS surgery next week

Post by renaely »

Joan Sheila wrote: Fri Sep 01, 2017 1:24 pm Thanks Ren for that as I'm in process of analysing all info before making decision to have DBS IF CONSIDERED suitable. Would have to go to UK as not done in Ireland
Joan Sheila
Hey Joan! Just thought I'd post an update a year after DBS.

They finally got me programmed right. I've also started taking Lyrica and Wellbutrin. With the drug combo, I've gone from 4.6mhz on the right and 4.3 on the left to 3.2 and 2.6, respectively.

PROS:
It does work. It feels like forever before your doctor gets you programmed just right and you get the hang of it, in so far as determining your AM "needs", afternoon and evening. Some days I'll stay on the setting I turned myself on at, other days I need more "juice". It really depends on what you are doing that day (exertion wise) and whether you woke up on a good day or bad day. There are still good and bad days, but far more good than bad. I'd say a 75-80% improvement.

CONS:
DBS wiring: Insure they give you plenty of "slack". An extra 1/2 inch would have gone a LONG way on my left side. Turning my head results in "pulling" on both my head and chest simultaneously.

DBS settings: You have to be careful what your settings were when you turned off, so you don't turn yourself on with a higher setting. The dominant side of your head doesn't like it and you feel like your having a seizure/stroke :)

Air Travel: You can't go through the body scanner, so you must submit to a "pat down", which may as well be classified as sexual assault. I've also really enjoyed a TSA agent yelling across the room "She refused!" followed by another TSA agent stating I "should get a wheelchair if I want to be considered disabled" (for the purpose of "enhanced screening").

Scars: I have fine thin hair. Trying to cover the 2 on the top, front of my head are hit or miss. Scars on your neck, chest + 2 bulging objects in the chest. Needed a new wardrobe to insure coverage.

And yes, I would definitely do this all over again. Some days I still get a tad pissy about it. It feels weird. You ultimately will almost forget it's there. When I start feeling "whiny", I turn myself off and go for a stroll through the house to remind myself why I have it :)
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