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By oshroshr On 2013.04.05 15:06
Is DBS still populAr? Docs keep leading my husband to it and then backing off. Is it a bad idea? The disclaimers are frightening. Any input would be wonderful.

By lurkingforacure On 2013.04.05 15:25
Yahoo has a huge DBS group, I would go there to check it out. From our research, my husband would have to be very bad off before he would be willing to risk the side effects of the surgery...granted, it goes very well for some people but the stats are not impressive enough for him....yet. It's not a cure, remember, and often can make non-motor symptoms much worse, and/or give you symptoms you didn't have before. I think they are trying the screen more carefully, to reduce the chances of that happening, but the bottom line is they still occur. What I personally find really scary is that they are doing BRAIN SURGERY and still modern medicine cannot tell us how or why DBS works, yikes!

By LOHENGR1N On 2013.04.05 16:35
I generally shy away from DBS discussions. The reason is I never had it my GP mentioned it several years ago and I told my Neurologist to which the reply was what's wrong with him? You're not any where near a condition to even start to consider that. I read the pro's and con's of it I've talked to many people who opted for it and a couple of close friends who had it. I personally haven't had anyone say boy I'm glad I did it the closest I've heard to saying I'm glad I did it has so far been I don't want to discuss it. Others may have had different experiences and like is said I guess there are chat rooms about it you can check out. In the end it is up to the person to choose.

Lfac, I love that abbreviation you used a couple posts ago (somehow every time I read it a duck pops into my mind lol) but I digress......I find it interesting your statement modern medicine cannot tell us how or why DBS works. Well if that is scary how about this... I can tell you how and why from how or disease works and a basic idea of how electricity works. DBS = operation inserting one or two probes into the brain, probes are connected to a power pack (battery) inserted under skin on chest. When the power is engaged pulses of current travel along probes into brain and then discharge. This discharge floods the area around the probe tip with electricity filling all the spaces between the nerve ending in that area completing a circuit. Not just selected gaps all gaps in that area. Basically that's how it works. The why is because the current is replacing the dopamine our brain can't make anymore. However, what they do not want anyone to know or think about is what they are doing amounts to creating controlled seizures in the brain....a seizure is an electrical discharge in the brain that spreads from the intended synapse to surrounding ones. To Me that is the scary part. How many controlled seizures can one endure before a full blown Grand mal seizure event occurs? Who knows? It is a hard enough sell for DBS when one has to still take their medication afterward, (remember when it first was done? It purportedly took the place of our medication or at the very least we could cut back to minimal doses.) side-effects of operations, constant adjustment of device etc. So it is no wonder modern medicine doesn't want and the operative word here is WANT to tell you how or why it works.

I'll get down off my soap box now take care, best of luck and hang in there.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By parkinit On 2013.04.05 18:57
And what they don't tell you as well is that if you decide that you are to the point that the DBS is not working any more, everything is just turned off, but left inside the body. I'm glad that there is not another surgery, but it just seems like you are asking for more trouble to leave these devices in the body in an inactive mode.

By blue2 On 2013.04.05 20:03
Here's a view from the other side. My husband had DBS surgery in 2011. We are very happy with the results. Before the surgery he was taking so much Sinemet (2 every 2-3 hours around the clock) he was dyskinetic. If he took less he couldn't move. His good "on" time was about 40 minutes every 3 hours. Now he takes one Sinemet tab every three hours. He has no dyskinesia nor dystonia. He does not develop symptoms if his dose is delayed an hour.
His ability to move and feel good post-DBS was fabulous. We have no regrets whatsoever.
My husband's symptoms and profile made him a near perfect candidate for DBS. We went through a lot of testing and analysis to be sure. We also visited DBS support groups and asked many questions. By the way, of the 20 people who'd had the surgery, not one regretted it.
I'll also credit our neurologist ( who did not push the surgery) and the excellent neurosurgery team who guided us through the entire process.

By Threadhead On 2013.04.06 08:09

By oshroshr On 2013.04.07 22:59
Thank you all. I understand the teaching hospital doc. "Trying to talk him out of it" now. But. My. Husband is do tired from tremors an his mood changes so often it is difficult to know what/who will be there afterward.
But his meds are not working. Guess he is in 9 th to 10 th yr. getting worse. Thanks for frank discussions

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