Okay, here are my concerns:

First, yes there are those here with successful DBS, but there are also those who haven't been so lucky.

Second, how long is it between surgery and programming; and who does all the chores while you wait? I've got a fam w/horses & many other critters.

Third, for those of us who live alone, how much care and how long is recuperation?

How much does is cost and do Medicare & insurance companies cover it?

How many pre-op & post-op visits, I'm 2 hours away from any decent hospital, and will need to hire transportation?

I'm bad, but not THAT bad. How do I know if the risk is worth it? If it doesn't work well I could loose EVERYTHING that is important to me.

MKane

All I can confirm from your questions is that it is covered by Medicare. Calling Charllie....paula

I don't mean that I am actually calling him on the phone,,,putting out a call for him lol.

I am v interested in any answer.

Perhaps Chasmo knows the status of this ?

Aftermathman.

Teresa - Thank you for the warm welcome. I am also very interested in the answer to your wireless connection question....
Mkane - I cant really answer your questions - I'm an Australian,and aware that our health systems are very different... but I can tell you that you know you are ready for DBS when you start to look forward to it- rather than fear it, when the pharmacological cocktail we swallow to enable us to move - no longer brings us the effective symptomatic relief it previously did, and the side effects of such cocktail are almost as bad as the disease itself.
So when your life sucks, there is still some hope.
Cheers
Take care
Cate

most states that I am aware of, Medicare will pay for the procedure.

Very little downtime in my experience, you do NOT want to do any heavy lifting or sweating into your incisions though.
As Cate says, you'll know when you are ready for a DBS.

The point I want to make is that surgical expertise is of UTMOST importance!!
There are more than a few surgeons out there who have NO business performing DBS-STN's which is the most difficult target area to hit. As far as adverse events go, I know of 4 people who have died. 3 of those were due to surgical screwups and 1 was due to a DVT.
SO in terms of risk, DBS ranks right up there with appendectomies or gall bladder surgery
Many have not lost a patient in recent years.

There is a good double-blinded study that concludes that DBS is a better way to control Parkinsonian symptoms. The median result is an 80% increase in on time and a 50% reduction in meds. I have NO offtimes and cut out amentadine, tasmar, mirapex entirely and went to 400 mgs of sinemet down from 2250 mgs.

As you all know, I am a BIG proponent of DBS. It is NOT for everyone though. I think for the vast majority it is our best alternative. I would again reinterate the absolute necessity for a competent team to do it. Even if you have to travel some.

MKane, I cannot answer your questions, we're all unique. Your prospective surgical team can advise you on these matters. I will say that a good programmer is worth their weight in gold.

I can speak for myself that I went back to work two weeks after my second side was done.

I'd plan on taking it easy for 3 weeks after your surgery.
If you are considering a DBS join my group:

http://health.groups.yahoo.com/group/DBSsurgery/

there is a wealth of info there.
Charlie

i think I agree with Rosebud. I can't stomach the thought of having another hole in my head (or is it two), dangling wires, plus another electronic device in my abdomen. Besides, I don't think I'll last that long to qualify for the operation.

All the best

Lloyd

abdominal IPG mounting is pretty much a cosmetic consideration for skinny ladies. The normal placement is below the collarbone(s). Mine are just below and behind my armpits, the best place for them IMHO.

dangling wires??? if you have dangling wires you have a much bigger problem to deal with!!!

holes in the head. these are dime-sized, and are fitted with a locking cap to hold your leads in place. These cause two small bumps on your head.

I never notice any of my hardware anymore. I never turn it off, it is invisible to me.

Charlie

do you know of any moves on the wireless DBS front ?

Aftermathman

rechargeable IPG's and a system that is totally contained on the head, that does away with most of the wiring, the weak link in the system.
I recall reading an article some time ago about external stimulation, but have not heard anymore about it.

Charlie

As some of you know, Kevin is going ahead with DBS and we are entering the testing phase now. As Charlie suggested, the surgery team is most important - because of this, we are switching neurologists and hospital systems which has slowed us down some but in the long run - the team is all important.

We interviewed surgical teams and did homework on experience etc - even c alled to speak at length to the local Medtronics rep. For those of you who are not comfortable or are new to the idea. Here's a fun link to give you a more light hearted view of DBS: just go to www.offcentertv.com - then click on "brain surgery preview".

I told Kevin he had to learn the songs!
Gayle