To DBS, Or Not To DBS. That Is The Question! | MyParkinsonsTeam

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To DBS, Or Not To DBS. That Is The Question!
A MyParkinsonsTeam Member asked a question 💭

I was recently approved for DBS by the neurological team from Mt. Sinai Hospital in NYC. I am 62 years old, have no noticeable tremors, and continue to work full time. My medication is limited to Sinemet (3x daily) and Azilect (1x daily). I am going to decline the surgery because the thought of the whole process worries me.
My question is if anyone else out there has declined having DBS, after having been approved, and do they regret not going through with it?

posted November 30, 2018
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A MyParkinsonsTeam Member

You can only regret things that you have done.
You can NOT regret things that you have NOT done.
My point is that once you make the decision to do the "thing", you can't go back.
It's over. Once the decision is reached and acted upon, you might regret having done that thing.

BUT; if you choose to NOT do something, that historical perspective is never realized.
There may as well have never been a decision to be made in the first place, since the result is the same.

In fact, you may even still be be able to change your mind and do the thing; just at a later time.

Personally, I've read enough about DBS to understand that like PD itself, everyone is different. It really doesn't matter what other people have experienced, since you won't have the same experience that they had.

IMHO, I think that if you are able to control your PD symptoms with just 3 Sinemet and an Azelect, I wouldn't contemplate DBS.

On the other hand, if you have steadily increased your dosage over the last 6 years from 3/day to 12/day in trying to get the desired level of control (like I have). Then I look forward to achieving the same miraculous results as others who have selected DBS as another tool in their arsenal.

However, I have to remember that:
"Everyone is Different."
"Your results may vary."
"Objects in mirror are smaller than actual size."

posted December 17, 2018
A MyParkinsonsTeam Member

I was also diagnosed with PD in 2006 and had DBS surgery in May 2017 following a significant increase in the tremors and dystonia which were a reacting to the heavy doses of Sinemet I was required to take. Following the surgery, I was able to reduce the Sinemet to approximately 50% of what I was taking before the surgery, which has now virtually eliminated both the tremors and dystonias I had been living with. I would strongly urge you to reconsider the surgery even if your symptoms aren't out of control presently. The side benefits of reduction of meds in addition to the control offered by the Stimulator will greatly improve your quality of life and allow you to continue working until you're ready to retire as opposed to being forced to retire because you can no longer effectively perform the job.

posted December 7, 2018
A MyParkinsonsTeam Member

I was approved for DBs and decided not to have it done. No regrets so far.

posted December 9, 2018
A MyParkinsonsTeam Member

I was diagnosed with PD in 2006 (47 years old). I took Sinemet and started to have substantial dyskinesia side effects. Tremor in my left hand was my only symptom up to that point. Had DBS surgery in 2015 and it controls the tremor well but not completely. I still take low dose of Sinemet. Dyskinesia no longer evident.

My biggest disappointment with DBS is that it doesn't control anything but my tremor. My speech is now poor, my legs freeze to the floor regularly, my balance and gait are poor, and my swallowing is impacted.

Would I do it again...yes. I just would have asked more questions so I knew what the expectations should be.

posted December 5, 2018
A MyParkinsonsTeam Member

I had DBS done about three years ago. It turned out that the wound where they inserted the wires on my scalp did not heal and I developed an infection; so a year later I had the wires in my scalp removed. A plastic surgeon who was brought on the case said that my scalp was to tight to accommodate the wires. He could stretch my scalp and I could have the DBS wires re-implanted. I chose not to do that. Although the DBS helped it did not help enough to go through the surgery and adjustment period again. Plus the description of stretching my scalp was not appealing. I learned later that the DBS surgery is more helpful for people who have tremors which I do not have. My main issue is my gait. I still have the battery and wires that go up my neck in my body. they have not caused a problem so far.

posted November 30, 2018

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