Parkinson's Movement

DBS Surgery

Post Surgery Day Number 18 - How wonderful this is! My neuro gave me the okay today to adjust my regulator. Went from 1.9 to 2.0 on the right side (can choose which side and more or less "juice") and I went from feeling like a frozen lump of dough to getting up and working in my office for half an hour!! Will post more as I can, feel free to ask questions. Wow!

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Wonderful!

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Marvelous!

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New start in the new year. Happy New Years.

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Congrats on your new life with DBS. I’m seeing my neurologist on the 9th and I’m going to start the proceedure on getting myself hooked up to the DBS system. I have a lot of questions..... how long did it take from getting evaluated as a candidate up to the point you are at now? Did you under go the operation awake or asleep? What device did you choose the Medtronics or the new one recently approved by the FDA called the Vercise?

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Because I waited for a surgeon to be hired in my area (versus traveling to San Francisco), it took a year. You also have to have a psychological analysis and other tests, so it depends on whether you live in a "doctor-rich" area. My surgeon chose awake, and I my neurologist chose the Medtronics device.

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We are in Canada and my pwp has a 4 year wait! Terribly long.

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You might consider getting in line anyway. What do you have to lose?

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Thanks Annemarie, I live near Boston so there are a lot of choices. Is the psychological analysis something that is given to everyone? I would like to try the Vercise device but will probably go with neurologist recommendation

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I believe they give it to everyone - they want to be sure of their success and mental stability is huge!

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Did they do both sides the same day? Was your PD tremor dominant or movement dominant? How much help have you required during post-op? Have your meds been changed any? Thanks. I am so happy for you.

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Both sides same day. No tremor, freezing was my issue. Meds are changing, going down!

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Dear Annemarie, thank you for sharing your experience and congratulations on the outcome. You give hope and encouragement to many people. We eagerly await your progress. God bless!

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I really hope this goes well for you. I had DBS 14 months ago, I remember feeling pretty excited in those early days too, not so much now. My balance and gait have gotten much worse, I'm even falling now where I never was before. I was going almost on a weekly basis to have my programming tweeked, until we had tried all options, Whether it is the PD progressing or the DBS itself is hard to say. Unfortunately this is doing a real number on my self confidence, I have also recently done the BIG movement physio, which maybe has helped slightly. Good luck to you!

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I'm so sorry that you're going through this. I looked at all the I looked at all the risks and and decided that I was never going to be sorry that I had the surgery. I knew where I was going without it and I was not willing to do it without a fight. my prayers are with you. Never give up

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Like you I also did LOTS of research prior to surgery and knew the risks. I do not regret having it done as my really bad dyskinesia is gone, I can drive again, there are definite benefits. If I can give you any advice, it would be to manage your expectations; although we know DBS is not a cure. I just went thru the 1st year post-op testing, stim plus meds on; stim off and meds; stim off and no meds--that was a tough one, me and full blown PD. It was all videotaped and no doubt there are big changes. So that makes me grateful. Can I ask how long did your surgery take, how long have you been diagnoised and what are your main symptoms? Mine was 13.5 hrs, I've had PD for 18 years, and never really a tremor, more stiffness, ridgidity.

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Wow - 13.5 hrs! Mine was about 6. I was diagnosed in 2002 - freezing and ridgidity was my issue.

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Thank you for your good wishes! Every case of Parkinsons is so different. Keep fighting!

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I'm wondering if going through airport X-ray with DBS device is a problem. It seems the DBS for some people is working better than for others but myself, like a programmer, I thing it should work for everyone. Also the range of setup should be enough to cover for errors and for each individual. But also a lot depends of how the surgery was done.

AnnMarrieBaird , how many hours the surgery lasted?

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Hi, I had DBS 14 months ago and was told never to thru airport security, not even the wand around your body. Just tell them you have a stimulator (or pacemaker- they understand that) and they should give you a physical patdown. Turning it off is not an option. As a side note, you can turn it off when you get xrays at the dentist. Also the settings are quite unique to each individual, it not an issues of errors as much as it is just finding the sweet spot for a person, without overstimulating which like meds, will bring on dsykinesias.

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Your answers fit mine!!

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You have to be groped at the airport. Surgery was 6 hours.

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I have no problem with that if she is a hot lady.

Just joking!

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That was a poor choice of words on my part. Not funny on yours

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Sorry Ann. The most important thing is your DBS went ok.

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You are forgiven. Have a great day!

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Let the WOW be with you....

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I'm happy for you.

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Is there a sensation in your brain as it works?

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Darn...I just tried to add to my previous reply. Just wondering, for my husband, if it's obvious on a man with no hair on top. I'm happy for you. Hope it stays a good thing. We're going to his PD support group tonight.

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No

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I had the surgery August 4 2015. Can’t believe the difference. Some days I almost forget I have PD.

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