Would You Get DBS Again? | MyParkinsonsTeam

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Would You Get DBS Again?
A MyParkinsonsTeam Member asked a question 💭

If you have had DBS surgery, is it something you would do again knowing what you know now?

posted February 10, 2018
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A MyParkinsonsTeam Member

I was diagnosed in 2004 with Parkinson's. For the first 5 years I was working and things went pretty well. I was 48 years old when diagnosed, and with young onset, many times tremors are not a problem. I considered DBS when my off/on problems showed up. I would take my meds and needed more in 1 or 2 hours, but couldn't take them for 4 hours. This brought on stiffness, speech difficulties, dystonia, dyskinesia, etc. My shoulder was tight and painful all the time and my left foot would cramp every morning. Neither has happened since the surgery!

I had the DBS surgery in 2010 by Dr. Mandybur at the Mayfield Clinic in Cincinnati (513-221-5240) He did an excellent job, no complications. I am now going back for my second rechargeable DBS battery (8 years). It took about 6 months to find the best program (Medtronic constant current 4.1), so you have to be patient and let the technician work with you to find the best setting. The key to a successful DBS experience in my opinion is finding a doctor who has done many DBS operations and has an excellent technician (Maureen Gardner is my tech angel!). Then they should do extensive testing to make sure you are a good candidate for the procedure. I have met people for whom DBS didn't work.

For me DBS has been live giving and essential for every day life. I have allowed my DBS to be turned off twice for research projects and it was not an experience I want to repeat!! With DBS, I drive, ride a bike, go to 7 hours of Parkinson's exercise classes per week, and live life. My speech is not good, my handwriting is gone, and my gait isn't great, all things I can live with. But when DBS has been turned off, after about 30 minutes I can't dress myself, move well at all, or speak. The "me" without DBS is unrecognizable! I thank God that I was able to have the procedure!!

If you have had PD for a while, consider trying to qualify for DBS sooner than later. It is not a "last resort" thing and it is better to have it when you are in relatively good health.

posted February 24, 2018
A MyParkinsonsTeam Member

I have had DBS now for over 9 years. I still take 12 Sinemet and 4 Comptan each day, mostly to make my gait better and to move better. I go to boxing (Rock Steady Boxing) for 1.5 hours 3 x per week.
Exercise has become very important for me. Its like medicine they say. My "PD score" got a little better in a year at my last checkup, so something good is happening. I NEVER turn it off and am careful to charge it when I need to. The DBS was turned off for 30 minutes for a research project a couple years ago and my physical appearance and movement both went south very quickly in that 30 minutes. Scary! Right now my speech is pretty poor most of the time, handwriting gone, but I'll take that over not moving. I'm convinced I would have to be in a nursing home or have my wife home full time if I had not had DBS 9 years ago! It is a miracle for me, however it is not for everybody. Programming took about 6 months to get the correct setting but now I go in 2x per year. I'm at 4.5 and 4.6 constant current right now.

posted September 11, 2019
A MyParkinsonsTeam Member

I have 2 dbssss. One2012. The other 2015.just this week had the first battery change. It lasted 6.5 years. I would definitely do it again.

posted December 16, 2018
A MyParkinsonsTeam Member

Yes I definitely would do it again. I was diagnosed 10 years ago and had DBS op in 2015. It has given me a new life I had become a recluse. I lost my license so didn’t socialise with others and just stayed at home. Now I have got my license back and life’s good!

posted February 24, 2018
A MyParkinsonsTeam Member

I had posted a positive response to this question not long after it was first posted some time ago. I thought I would update my experience. Just to recap I had DBS back in August 2019. I had been diagnosed with early-onset Parkinsons about 9 years ago now. I'm 57 years of age. Before surgery, I was on approx 15 tablets a day of various descriptions. After DBS this has slowly come down and today I take 4 tablets a day. I have been happy with the outcome of DBS. The first 12-18 months was a journey of getting the setting and meds just right so it does take time to get it working just right.

The big improvement came about 5 months ago now when one of my neuro's made a rather large change to the DBS settings. That change has essentially eliminated any tremor I had and the dyskinesia to the extent that you would be hard-pressed to pick that I have PD. I still find that my legs feel heavy and lethargic but that is a small thing in the overall scheme of things.

Whilst I appear to be largely unaffected by PD now what people do not see is that there are still pains, aches, insomnia, and sometimes just feeling lethargic. DBS worked wonders for me but it doesn't work for everyone to the same extent. Happy to answer any questions, just message me.

posted March 13, 2021

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