DBS feedback: I am being evaluated for... - Parkinson's Movement

Parkinson's Movement
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DBS feedback

Gobbsofjoy
Gobbsofjoy

I am being evaluated for DBS. I know most of the benefits and risks and am finding that I seem to only hear about the success stories. Of course it's natural that people with a negative experience would be underreported for obvious reasons.

I am asking for feedback from all who have had DBS; the good and the bad.

Thank you!

20 Replies
oldestnewest

Bad--the battery pack was too big for my chest

Good-It has given me my life back

I would consider that a good tradeoff! Thank you for replying.

So, Was charger replaced ? 😐

AmyLindy
AmyLindy in reply to AmyLindy

Extra surgery, etc :( ?

Single lead was a miracle went back for the other side now I have balance and backing up issues

So do you have mixed feelings or do you think the benefits outweigh the deficits?

The benefits outweigh it definitely don't have any regrets

I have not had DBS, but I did note a YouTube video which is from a person who's voice has been negatively impacted. This I think is one of the more frequent bad outcomes. Have a click on this . . .

youtube.com/watch?v=ftmP7Vk...

FMundo
FMundo in reply to FMundo

youtube.com/watch?v=ftmP7Vk...

Gobbsofjoy
Gobbsofjoy in reply to FMundo

I have read about speech and cognitive problems which concern me. Thanks for your reply!

I would be concerned about it bringing on dementia or other cognitive issues. It depends on how old you are....over 70? ok. Younger? Change your diet and exercise. My friend at 51 was just denied DBS. I was so happy as the negatives of DBS at his age outweigh the positives. He is trying diet/exercise now. I am doing diet (I am at the beginning of my diagnoses) and it has eliminated symptoms. Lectin-avoidance diet.

Gobbsofjoy
Gobbsofjoy in reply to NRyan

I am 59 and share your concern about cognitive issues with DBS. Thanks for your reply.

I am not positive about my dbs, i wish i never did it! Since the operation i have walking problems, balance problems, freezing. But it wasn't quite a choice, i had to do it, at that moment it seemed the only option.

One of the leads in my head is not for 100% a the right place, which causes all those problems and a lack of benefit. Another problem is that all the doctors i have seen, are new, they don t know me and they don t know how i was before the operation (i could walk easily, dance, skate, no balance problems at all - i was just always tired and sleepy). They always say: oh but Parkinsons is progressive - yes i know but not that progressive in one day! I have this desease since 1996 so i know something about it and i know my body. And i am totally convinced that my problems are a result of the operation.

And nobody told me about the weight gain i hate it to be "fat" and there is not a lot to do about it because of my difficulties with moving.

In my case DBS caused a lot of new problems, which was very difficult to cope with because i wanted to start a new life, with al those happy stories about DBS, just like you said, it seemed to me that everything would be better, but most everything was worse. It took me 4 years to get over it.

I appreciate your reply. I have read that Michael Okun in Florida specializes in identifying DBS mistakes and fixing them. He writes that among the avoidable complications is electrode placement and proper screening. Some clinics performed DBS without verifying that the patient had Parkinson's!

Yes i know and i didn t respond well to Levodopa, that was a sign, but not taken seriously enough at the time. There is also a another trouble shooting clinic in the USA, but i haven t enough money to go there. I live in the Netherlands and it s far too expensive to go to the USA to a specialized clinic. And that hurts. Knowing that somebody maybe could help you but not able to go there.

Xenos
Xenos in reply to Hollandaise

Sorry to hear that, Hollandaise.

Did you try a specialized center in France ? As far as you are European, there should be some kind of agreement between the two countries when it comes to Social Security. And even if there was not, a consultation is like 50 Euros.

- I heard that Hopital Salpetrière in Paris is very knowledgeable,

- So is Pr Palfi at Hopital Henri-Mondor close to Paris, and

- the general hospital of Grenoble in the French Alps, where DBS was invented.

I'm sorry you are suffering from medical treatment that was obviously misguided.

AmyLindy
AmyLindy in reply to Gobbsofjoy

I greatly appreciate your willingness to document these results ; it can't be easy and your story gives me/us critical new perspective.

I am fortunate to have an excellent team of doctors.

Thanks to all of you. I don't know if the French clinic is that specialized in trouble shooting like dr Okun or Siera Farris in the USA . If that s the case I seriously consider to go there. I will get more information that s for sure but I am not sure if they are much better than the docters here in the Netherlands. But I am grateful for your information!

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