Quote:
Originally Posted by paula_w
Along with DBS, they forgot to tell us that PD itself causes much pain!
Questions:
How did you get through it? Sit that long? Did you listen to music? If so, and now I am just being nosy, what did you listen to?
They should have something for DBS similar to Lamaze for childbirth. It's certainly as long and as psychologically rough as many births. Deep breathing, choose a focal point, all that.
Will you eventually be able to have a local programmer? I would love to hear about your programming experience.
Do you feel better from the adrenalin high from surgery?
Please keep up the periodic posts. As I've repeatedly said, DBS is in many of our futures.
Paula
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Hi Paula;
I like my doctors method of knocking you out for everything but the lead placement. In any event, DBS SHOULD be painless,if it hurts you should tell your anesthesiologist. I can see where it would be boring to be fastened to the table. I got bored although I was awake for only 45 minutes. There is NO WAY I;d equate having a DBS with childbirth!!
Your idea about the relaxation part is an excellent idea though. Many do have considerable anxiety.
When DBS Sounds good to you it is time to have it. WHEn your day-to-day living becomes unenjoyable, you are maxxed out on meds, your time has come IMHO.
The "adrenalin high" is a very real phenomenon. The brain thinks it has gotten a mini-thalidotomy and one has a cessation of symptoms for 3-7 days. You will probably feel like you do not even have PD!! The your PD comes back with a venegance. This is true of the majority of DBS'ers I speak to.This is a "preview" of what your functioning DBS will be like. (kinda!!)
You will usually be given about 6 weeks to heal and let the brain swelling subside. Then most programmers will spend an hour or two with you exploring different settings. They will have already gotten an idea of what will work from the test stimulation in the OR. Then is a question ofworking up to theraputic settings. Most of us arrive at the correct frequency and pulsewidth fairly quickly. Same for the leads. then it is jjust a matter of ramping the voltage up a tenth or two at a time til the setting is effective , and doesn't fade after a week or so. This can be done by any programmer, so my sense of it is you can get a functioning program on board and then let your local programmer tweak it to fruition under your team programmers supervision. This is how it works for 80% of the people I have talked to, who went to a distant surgeon and then came back home.
As with all things PD, we are all unique though and your "mileage (most-likely) will vary!"
Charlie