CLEAR POINT OR MRI INTERVENTION DBS SURGE... - Cure Parkinson's

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CLEAR POINT OR MRI INTERVENTION DBS SURGERY VOTED "No" BY UCLA BOARD OF REGENTS

wynn7 profile image
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I got the devastating news on Weds. that after waiting over a year for the surgery which was again promised in 30 to 60 days in August we were told they have decided not to do this surgery at UCLA . I have gotten progressively worse & had my hopes on this surgery! Now it appears we have to look at options at Barrows & UCSf which will be difficult logistically & financially. (We live in the L.A. area.) I decided a long time I will NOT do the awake DBS!!!!

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wynn7
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10 Replies
wynn7 profile image
wynn7

UCLA had the equipment from MRI Interventions installed early in the fall. I was told there would be a wait of approx. 30 to. 60 days with me being the 1st. Now they are going to use it for drug infusion in to the brain only. USC does not have the equipment. Very frustrating!

Jash profile image
Jash

I had Clearpoint DBS in Pittsburgh in June 2012. Try the University of Pittsburgh Medical Center. Dr Mark Richardson was my surgeon.

Pelley profile image
Pelley

Wynn

The "awake" DBS thing is much worse than it sounds. I've been to the dentist and had more trama and pain.

After-all, It's lot like it's brain surgery ......er....or, I guess it is!. I was telling jokes to my Neuro team during the day long surgery. It sounds cavalier I know, but we have the easy part. All we have to do is lay there.

Sunnysky profile image
Sunnysky

Hi Pelley what was the result of your. DBS is it worth the trauma and yes it's brain surgery! with I guess all the associated risks but has your quality of life improved

Sunnysky

Kadie57 profile image
Kadie57

I had the awake DBS, while it was not easy it was well worth it, I got my life back, don't be discouraged, when God shuts a door another will open!. I was strung along for 1 yr + by a different Large clinic in Wisconsin, 20 min before they were going to shave my head and 2 muscle relaxers the surgery was cancelled. I was beyond words, so upset. So that door was slammed shut by God, My insurance change, so did my doctors(due to the ins) It was the best problem I ever had, I rec'd dbs and have never looked back. Yes it is hard, Life is hard. so move on the best you can. There is always a reason for everything that happens to us, Sit back and listen for the whisper. Lets us know what happens Kadie 57

Prayingforacure profile image
Prayingforacure in reply to Kadie57

Amen.

98Rob profile image
98Rob

There is nothing wrong with the "awake' DBS. I had it done in Jan. 2007 at Univ. Of MD. Medical Center. Drs. Eisenburg and Fishman are the best!

jonroberts profile image
jonroberts

I had the awake DBS surgery in May 2012. There was a 3 hour delay due to emergency surgery unrelated to DBS. I was prepped and had the halo on my head for about 8 hrs due to delay. I was drifting in and out of consciousness during surgery. My quality of life is much improved !

Jeanna profile image
Jeanna

I had my awake DBS surgery in Jan 2013. While it was uncomfortable to lie so still for so long, it wasn't that bad. I believe my doctors gave me a little something to help me relax during the procedure. Now I have almost no tremors anymore.

Giannababy profile image
Giannababy

Does DBS counteract only tremors, or other non motor symptoms as well?

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