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Pros And Cons Of DBS

A MyParkinsonsTeam Member asked a question 💭
Discovery Bay, CA

My neurologist has suggested that I research DBS and consider it for the near future. I would really like to hear from (and perhaps communicate privately with) someone who has had this treatment as to the pros and cons. I am trying to gather information for myself in order to make a well-informed decision. The whole process seems kind of horrifying - is it worth it?

Thanks.

February 8, 2019
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A MyParkinsonsTeam Member

I have a Medtronic Activa AC implanted in April 2014 in the Universiity of Pittsburgh Medical Center. The electrodes were implanted with Interventional Magnetic Resonance procedure. It was a 9 hour surgery whith me totally asleep.The precision of the placementof of the eletrodes was excellent, under 0.5mm .Four days later they implanted the stimulator and the leads to the electrodes in one hour under general anesthesia. The DBS was turned on two weeks later and it worked well for 4 and a half years until having to change the battery. It controls the dyskinesia, tremor and rigidity 100 %.It did not improve my balance the device needs to be re-programmed to minimize falls as much as possible. I underwent DBS surgery three years after the diagnosis of early onset Parkinsons.
Overall the DBS has given me more than any oral medication available in the markeet. In my case the extra movemnt I had made the doctors go for the asleep procedure.
I have a good programmer thereaffter and had to be patient while my neurologist found the right dose of the medications once the DBS is on Do not be scared, it's a safe procedure, just choose the right surgeon and team..

March 6, 2019
A MyParkinsonsTeam Member

My mother had the entire procedure done 3 1/2 years ago. A psych test is conducted beforehand. Once cleared, the procedure begins with the addition of the halo. Though she was given pain relief beforehand, my mom said this was the most painful part for her. It is screwing on of screws to the forehead, very hard to watch. Then comes the procedure itself. She said she was coherent through the procedure and was fine. Seems like it took about 3-4 hours to complete. She stayed in ICU overnight and was monitored regularly. I kept her for about 1 week for recovery and regular cleaning of the incision. The 1st few days are hard.
The battery packs were adjusted after the fact so it's a bit of a delay.

She is scheduled to return next month to have the entire DBS system replaced due to a new and improved version that has become available. She is nervous about doing the procedure again.

It certainly has benefits to it. At times, we questioned what the improvements were but we quickly learned what those were. She was having difficulties moving around, getting out of bed etc. We visited the dr. and were told that the battery packs needed replacement, (their life span is abt 3 years). Based on that, we knew that the system was serving the purpose and we needed to replace the battery packs and get her functioning again.

The wires below the skin are not visible and she does not feel them. The more noticeable item is the battery packs placed just below the collarbones. They are small boxes on either side. They are not visible to the common eye as they sit below the shirt.

February 18, 2019
A MyParkinsonsTeam Member

It took my tremor getting bad enough to decide on dbs to me the benefit was far better than the risk I even had an infection after the first time and had to have it removed but in the end my quality of life is much better

February 17, 2019
A MyParkinsonsTeam Member

Good as I haven't regretted my DBS except the box on my left shoulder is in my way if I try to do pushups at times

March 15, 2019
A MyParkinsonsTeam Member

I believe it is. I have had a DBS and feel it is definitely worth it

March 11, 2019

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