As some of you know, I have non-Parkinson's--or Essential--tremor. I was born with it, but it progressed as I grew older. I decided to have pulse generators connected to electrodes inserted into a very deep part of my brain. It was before the second implantation, after I realized how delicate the surgery actually was, that I found some old, old friends of mine. Dax was one of them.

The batteries that power the pulse generators (which are in my chest) are supposed to last for 3-5 years. The pulse generator's battery that controls the tremor on my right side was fine, but when it was determined that I also needed a pulse generator to control the tremor on my left side, I decided to have the battery that controls my right side replaced, as well. That way, I figured, I'd start out with two new batteries so that, when they needed to be replaced, I wouldn't have to go through 2 invasive surgeries.

But, the battery that controls my left side gave out after 13 months. I chose not to have it replaced until the battery that controls my right side gives out.

I saw my neurologist the other day and he said that my one remaining battery was a 'happy battery,' that was plugging along doing its job.

He then told me that there is a rechargeble battery being developed by the surgical apartatii company that developed the whole electrical/mechanical system. You see, I was one of a group of 'guinea pigs' used to test the procedure and the aparatus. I didn't know it at the time. Well, I kind of did, but was led to believe that it was a tested and true answer to my tremor--tremor that was as severe as Parkinson's tremor.

I now try to control both my left side and my right side tremor with drugs (I have good days and not so good days with my right side.}

What do you believe is the real responsiblity of the medical community? Should they help the patient or help the companies that seem to want to help the patient?

Sue them. I think it is a serious matter.

If by the "medical community" you mean doctors, I believe that by oath and tradition the doctor's first responsibility is to his patient.

Elena suggested a lawsuit, but if you were actually helped by the procedure, you would be very unlikely to win, as there were not only no damages, but actual benefits.

If on the other hand you could have done as well on medication and were not told about the experimental nature of the invasive procedure, you could well sue and perhaps win punitive damages, although there would be few actual damages, since you are able to work and maintain a household, and therefore there is no loss of service.

This amateur legal advice is free of charge.

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If she sued, who would change her batteries?

I thought they had made a version of such devices where the battery could be kept externally, and the power transferred magnetically to a coil which powered the device. I might be wrong in this.

Liz, if a medical device is not working as planned and promised, and this will put you through more surgeries, I think you might have grounds for a lawsuit.

I don't know about that, Myr, unless it's a possible heart pace-maker. Even those, I think, are implants. I know what I have and it's all internal--chest and brain. I'll never wear a bikini again. Damn!

Of course, I could wear a bikini if I didn't mind people's questions about my chest implants which are above my breasts, but I don't really like the scars--although I insisted that they be at least symetrical. They're really not that nice to see.

I don't know, but I think that the pulse generators have improved the tremors even when I'm 'turned off,' which is only during the night. For example, I no longer fall.

Doctors try to help people. Medical technology tries to help people. I've willed my brain to science so that it can be studied in an effort to help people with both Parkinson's and non-Parkinson's tremor.

But--!

It was my understanding that Benign Essential Tremor was typically controlld with drugs, usually Valium. Did that not work for you?

I currently take propranalol, which works fairly well. My neuologist suggested valium last week until my right side pulse-generator battery needs to be replaced. But, he said, one possible side-effect is a feeling of euphoria to the extent of feeling, as he put it, "Oh, it's fine, go on into Iran!" No, as long as I can work and keep up with things around the house, I don't want to take any more drugs, thank you, fine.

My dilemma is, when the time comes for me to go in for another battery change, do I opt for chargeable ones, if they're tested and available, or do I go for the same ones I have now? My real fear is losing control of my right side. If it weren't for that fear and since I'm already a test-subject, I'd probably go with the chargeables, depending on how long they've been on the market. 'Tis a puzzlement, but I hope I'll have enough time before I have to choose.

Benign sounds so kind, doesn't it? But it can be a real pain in gazingus!

Ah well... they do have odd ways of naming things, don't they? At any rate, although having a disease with pain-in-the-butt symptoms is anything but benign to your life in general, "Benign" is used to indicate that a disease is not fatal, and that's always something to be happy about in my book.

If your doctor seems confident about the chargeables, I would definitely go with those, liz. It will mean less invasive surgical replacements down the road, which will be safer and make you happier. Scope it out carefully, and if it seems safe, I think the chargeable ones would be the better choice, without question.

If the propranolol is working well for you that's great -- I'm sure that your doctor has already made you aware that it's also used to treat high blood pressure and angina, and some other heart problems, so if you aren't getting dizzy from low blood pressure or experiencing a slow heartbeat and it works for the tremors, you're all set. But short-term use of Valium is nothing to be afraid of. In small doses it rarely has a mind-altering effect, it's main use is as a muscle relaxer. Larger doses tend to make people sleepy, rather than "high". And it's a pretty safe drug to take too; it's extremely difficult to take an overdose of Valium. You can take an entire bottle of your prescription and experience nothing more than a very deep sleep for 18 hours or so, with no harmful after effects. It is addictive if taken for a long time ("long time" being different for individuals.... usually a number of months).

Do you have the head and voice tremor as well, or just the extremities?

Keep us posted on the developments!

Yep, I'll die with it, not from it. And, yes, my head, my voice and my balance--along with hands, arms and, on really bad days I think legs--but that could be balance, since essential tremor isn't supposed to involve the legs.

As with everything, one learns to compromise, adapt, and compensate, all the while keeping in mind that it takes more muscles to smile than it does to frown. Whenever my Mother would catch us making faces at each other, she'd say--"Stop that right now or your face will freeze that way." I'd rather my face froze in a smile.