After being diagnosed for 5 years, I'm fa... - Cure Parkinson's

Cure Parkinson's

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After being diagnosed for 5 years, I'm facing DBS. Is there anyone who has regretted having it? I will be getting it at Barrow Neurological.

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16 Replies
ccobroussard profile image
ccobroussard

I was diagnosed 9 years ago and had dbs in March of 2013 and would do it again in a minute. NO REGRETS!!!!!

hanuman profile image
hanuman

I've been diagnosed for 17yrs and am also waiting to go in for DBS. It's definitely a daunting prospect, made slightly easier by the largely positive feedback on the net. Good luck!

ken_phd profile image
ken_phd

I was diagnosed in 2005 and put off DBS until the tremors made life miserable for me. I had anxiety about being awake whiler the procedure was being performed. I had the DBS procedure in April on this year and the tremors on my left side are completely gone with approx 90% improvement on my right side. the only downside is the time it takes for your hair to grow back. The operation was a piece of cake. No problems (that I know of). I would recommend this procedure for anyone with Parkinsons. I wish I had done it sooner.

Ken - Dallas Texas

FifteenyearsPD profile image
FifteenyearsPD in reply to ken_phd

Being awake was not so bad ESP if you joke around with OR team.... That blows their minds and keeps yours off procedure

srarndt profile image
srarndt in reply to FifteenyearsPD

DITTO!!!

98Rob profile image
98Rob

Hi. I've had PD since '95. When I was 31. I had DBS in 2007 and like the other post said I would do it again without hesitation. Good luck.

FifteenyearsPD profile image
FifteenyearsPD

Diagnosed 17 + years ago. Believe early diagnosis is best thing that can happen as you get on to meds before pd gets so bad. Had DBS almost 2years ago and would do it again because without it Id probably be bedridden. My 5 yr old granddaughter said I was "magical" when she saw me walk post DBS settings done

srarndt profile image
srarndt

Diagnosed 9 years ago, DBS almost 3 years ago, only one regret...that being that I did/could not have it done much sooner... I used to have a job I loved and now am on disability instead.

Best wishes!

Steve in Bisbee, AZ

I had DBS in January this year and am very upset with the results as i can no longer walk and so am house bound.

Barb1968 profile image
Barb1968 in reply to

if you don't mind me asking, what happened? I am 44 yrs old and my neuro keeps bringing it up but the thought of it scares me to death. I have two small children also so I am trying to get all pros and cons. thank you

hairnet profile image
hairnet in reply to Barb1968

I am 43 Just had DBS in July........please message me....I am also a mum of an 8 year old x

Lots to share , tell you about.. x

I think they cut my medication to much and they (doctor) won't accept it and in fact I don;t think they believe me..You know you have an appointment and they see you for ten minutes and then tell you how you feel and to be honest I feel so rough but they won't have it.

hairnet profile image
hairnet in reply to

that is awful....can you not just turn off the battery and go back to preop days? I know that sounds flippant but my typing is bad at best of times let alone late at night!

parkinsonspistol profile image
parkinsonspistol

My doctor spends 45 minutes at least with me.

DBS has been mentioned to me. I belong to a very small Support Group, of which 2 members have had the Surgery.

I am not convinced its for me as they are suffering. Had I not seen their results I would have gone down the Surgery Path.

My progression is steady and I have started a Gym Routine with a Physiotherapist who has devised a special workout for me. ...... and I am enjoying it.

I am determined to avoid DBS.

Coblrman profile image
Coblrman

Not all conditions respond to DBS. I have FOG (freezing of Gait) and was told I wouldn't benefit. A lot of the earlier surgeries that failed just missed the spot and moving the leads corrected the problem. I understand they're much more accurate in placement these days.