Sunday, October 3, 2010

Heading into uncharted waters

First let me thank Rich for his comments on my last Blog. It's great that he has found some relief and has started rebuilding his life. Its fantastic that his docs are willing to try something a little different. One of my Canadian friends was that lucky years ago and is doing well. (She recently had her battery changed and things seem to be going just fine).

I'm not much different than the last time I wrote, so there isn't much of a personal update. My handlers are politely going through the protocols of adjusting meds and then waiting the 4-6 weeks for me to report back.

Depression & anxiety have some common real estate in my brain, I believe, so the Docs are trying to find the balance and get it addressed. I appreciate their efforts.

I am going to have to have a non-related surgery in the not too distant future. For anonymity I'll leave out any descriptions. I am traveling a number of hours in order to work with docs that aren't in my home town, both because of my own paranoid fear of everyone in my town finding out about my gizmo, and also because my insurance will actually pay more of it. I completely understand HIPAA rules that say no one in the office can talk about my conditions and even then it is supposed to be on a "need to know basis", but frankly, my town is so small that I doubt there is anyone who is more than 2 degrees of separation. (I know someone they know).

As for the insurance, OMG I could rant a long time about it. My fear here is that since I couldn't have an MRI done, my surgeon wants another test done and it will be my luck someone at the insurance company will say "why didn't you do an MRI?" and the answer will be "because he has a neurostimulator implant" and the insurance company will say - "we don't have that on our records - so we're dropping him". Ya, I'm paranoid about a lot of things.

I have another physical problem that has inoperable pain. I figured since I was going to meet my deductible I might as well have it explored again as well. That doc believes a certain drug, taken for 6 months, stands a real good chance of relieving the pain. But its a 6 month trial and if it works, you pretty much have to stay on it. (It coats the lining of your bladder if you must know). The only problem: $172/mo. Luckily the pain is transient and comes and goes as it pleases.

Maybe, if the gizmo and meds really start working well, I can get a job with better paying insurance. A good paying job would be a good start anyway.

Besides congratulating Rich and acknowledging that many of the "firsts" are having batteries changed, the point of my writing was this link about "Patterned Pulses". This whole DBS frontier is HUGE. Frequencies, milli-amps, volts, pulses.... Its going to take awhile to map out what modern science can and can't do inside our heads.

Which brings me to a thought I had while debating whether to have the surgery. The surgery itself will knock me down for at least a week, probably 2. Then rehab, etc. It was overnight to get wires put in my brain. When the Docs offered me the Broaden Study, I immediately had my answer, even if I did take some time to 'think about it'. That was a no-brainer (pun intended). The depression had ruined my life and trying something different than meds, was no big deal. I've thought 100x more about the current need for surgery. I can live with the pain for awhile longer - maybe. Just an interesting thought for anyone who is hoping to get in line for this gizmo. Give it more thought.

The first stage of the study was really focused on Safety, not efficacy (whether it works). Obviously if they are beginning to move ahead, they've established the safety and there had to be enough 'successes' to warrant moving ahead.

I'd still like to hear something from some Medtronics candidates. Does it seem to be working? (Or did Medtronics put a gag order on them?)