Quote:
Originally Posted by soccertese
ed,
something to consider about DBS is that with more and more acceptance of it and aging population, might be much longer waiting lists and higher out of pocket costs? so at the minimum, even if you want to put it off, at least get all the info you can especially where you would want to have it done.
DBS was always on the back burner, i thought the "cure" would be developed by now after 13 years since diagnosis. now i'm taking up to 200mg C/L every 2 hours, it's a long story but i woke up 1 morning a lot worse and i want a DBS, it's a no brainer. but it's obvious i waited too long. my point is, even if your're not mentally/physically ready for DBS, it never hurts to keep tabs on what's happening in R&D and who has the best record so if the need comes on suddenly, that you aren't in a panic to just "get in line" wherever you can and can attempt to get the best neurosurgeon/organization.
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Soccertese,
Being a pragmatic person, I wasn't going to wait for the "cure" or wait til DBS was not going to be an option anymore. My tremors got to the point where they affected my QOL. The process takes time and the surgery was looking at a fall slot. My wonderful Dr. got me in earlier. For insurance you need solid documentation from a reputable doctor. Call insurance co. beforehand to verify coverage.
First you take a lot of cognitive tests. Then you take an off on test to check how meds are affecting you. Then you will have either 1 or 2 surgeries (I prefer 2). My 1st one was the hardest as you are unmedicated and awake for the brain's electrodes. That will be harder for those with dystonia or dyskenesia. I have neither. I waited for my tremors to be on both sides to go bilateral and not to have go through this again. The 2nd one was to insert the wire and generator. This part you go under. I had no complications. In 2 weks I go for my turn on day. I was dx at 51 and I am in my 10th year.