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Appala

Intrepid Decision

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I'm facing a very big decision and hope you can help. I've qualified for DBS, which I definitely need, and have been offered either immediate regular DBS surgery using Medtronic, or to participate in the Boston Scientific Intrepid study through Kaiser here in Northern California, which might delay surgery & "turn on" & programming for several weeks or months. There are so many pluses & minuses for each choice that my head is spinning. I'm female, age 69, tremor dominant, Dx 2007 (but symptoms before), reasonably good health, excellent cognition, with increasingly troubling symptoms since spine surgery last year. Sinemet & other PD meds have done little to nothing for me all along, and in fact have caused painful & disabling dystonia. I've read your blog and other material about BS and their hopes for the newer technology (fine-tuning, reducing side effects, etc.). I need relief ASAP, but can also see potential advantages to the BS opportunity. Can you help me make up my mind?

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At the moment there are no proven advantages. This is a trial and theoretically the lead style and programmer may allow some options after DBS.  We have used both technologies (approved and the Boston) and they both seem to work great.  I think you have to be willing to undergo the clinical trial and trial related visits and also understand that the new device is under development.  Different patients have a different appetite for a clinical trial, especially since some patients will be off for a few months.  My thoughts are that in general both approaches work very well and you can't go wrong either way.

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Thank you. However, I have another question. I just read this in a NWPF news article (DBS on live national TV) and hope you can clarify. I've heard DBS complication rates of just 2%-5%, but 39 serious adverse events out of 121? Very scary! Do you have better stats available, maybe for larger groups of patients? I've personally known of 2 friends who had serious infections, so I'm very concerned.

 

In a 2009 study published in JAMA, researchers looked at 121 Parkinson's patients who had undergone the surgery. They found a total of 39 "serious adverse events related to the surgical procedure." The most common complication was an infection, usually treated with antibiotics, but others were more severe. One patient in the study experienced a brain hemorrhage 24 hours after the surgery and died.

https://nwpf.org/stay-informed/news/2015/10/this-month,-a-brain-surgery-will-be-broadcast-on-live-tv-for-the-first-time-ever/

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There are no national reporting web sites for DBS so you need to interview your team and establish their experience and track records.  Serious adverse events are defined by an agency (usually the FDA) and in most cases these issues can be resolved.  There are definitely bumps in the road with DBS, but in general if you have had proper screening there is hope that it may help!

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I must say I'm surprised and disappointed at the lack of comprehensive reliable outcome statistics for such a potentially dire surgery. How do you determine your team's experience and track record, other than asking, and taking their word for it?  Makes me uneasy.

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I agree with you.  Another way besides interviewing the DBS team and questioning them about infection rate and outcomes is to read their publications.  You can find these on pubmed.org by typing the author's last name and first initial.

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Appala, I found the similarities of your disease and mine to be quite uncanny.  I am also 69 years old with drug resistant, tremor dominant symptoms.  I had DBS performed by Northern California Kaiser 11/2 years ago, and it completely resolved my tremor.  I also considered the BS study, but, in the end, I decided to have the surgery done unilaterally and that eliminated me from the study.  I wish you the best, and I can be reached at malexander109@comcast.net

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