My DBS (Deep Brain Stimulation) opinions and experiences

[Megafone]

Last falI had been incredibly impressed by the moderator of the DBS Facebook page in his responses, and I thought If I can be as well-spoken as he is 25 years after I’ve had DBS like he is, so I decided to proceed with the surgery.

The surgery did not go well. The surgeon nicked an artery in my brain which caused a brain bleed. In the 3 days after the surgery, my wife was told I might not make it… it was not an easy time. I was in the hospital for about 8 weeks then I was in rehab for 6-7 weeks. Before going for rehab, I went home to visit, and because I was in the hospital for so long, being that I was quite inactive and my muscles atrophied an alarming amount, on 2 occasions I fell to the floor in my house, and was there, face to the floor for several hours because my wife sleeps in very late (she’s retired). The cure for that scenario was to put her cellphone on her bedside stand and then we bought and programmed an Amazon Echo Dot /”Alexa” to respond to my voice telling Alexa to dial her cell.

I’m writing this to inform PWP who are trying to decide whether to have DBS surgery what possible things can occur.

The other big thing that happened is that the doctor is obligated here in Ontario to inform MTO of my brain surgery whereupon they promptly cancelled my driver’s license. For this reason alone I may have chosen to not go ahead with the surgery…it’s such a hassle, AND it’s $800 to do the Functional Driving test.

While I do not suffer from Dystonia, Tremors or Dyskenisia, I have not yet been able to walk normally ,even after 5 sessions with the neurosurgeon and his assistant and 6 sessions with a physiotherapist.

[Psalmody]

o dear thanks for sharing yr experience. I’m really sorry it hasn’t been a successful journey for you. I hope things improve in the near future

[Boscoejean]

I am sorry you have had such a bad experience and I hope you can recover.

[Megafone in reply to Boscoejean]

Aside from my walking, I have recovered already. I actually didn’t write the entry [“My DBS opinions…”] to persuade anyone not to choose DBS surgery, but to be aware these things did and can happen. Perhaps I went a little too light on the benefits [ie…“While I do not suffer from Dystonia, Tremors or Dyskenisia…”] I feel like I have a little secret (I have Parkinson’s) because for the most part, other than my walking which looks like I have a gimpy leg attributable to any of a number of causes, one wouldn’t know I have Parkinsons, which is not a bad thing. I feel like the surgery, in retrospect, gave me a longer runway for my life, despite what I went through to get here.

One other thing I should mention: the time spent in hospital and rehab was very hard on my wife… She visited me in the hospital almost every day. [just an aside: the very day after I got home for good, she found out her mother fell in her house and broke her hip (which meant she was on the hospital visit merry-go-round again.]

[pdpatient]

Thank you for sharing your experiences with the community. I am glad that you are in an overall better place now.

BTW, is there no legal recourse for the so called "accident"?

[Juliegrace in reply to pdpatient]

There is risk with every surgery and procedure. Sadly, the OP had an accident happen. Is your implication that the surgeon did it on purpose (so called “accident”)? Doctors make mistakes just like other humans.

[pdpatient in reply to Juliegrace]

No. I am not implying or insinuating anything sinister. I should have been more straightforward. I meant Malpractice which is aka Accident.

[MBAnderson]

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