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Deep Brain Stimulation for Parkinson's promises to relieve tremors. Side effects include: apathy, hallucinations, hypersexuality, cognitive dysfunction, depression, and euphoria. Would you have your loved one get the surgery? Has anyone here had success with DBS?

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I've read several studies about the use of DBS on Alzheimer's and the results have, so far, been positive. It should be available for AD in a couple of years if results remain positive.

Any surgery is risky and brain surgery more so. My dad developed dementia because of a brain surgery aimed at preventing damage from an old WWII injury, so I'm aware of the risks in a very real way. Still, I believe that, for AD anyway, this may be one of the first real steps forward because people are regaining memory.

For Parkinson's, results may not be as dramatic even though the procedure has been done for several years.

As with all surgery, the pros and cons need to be understood. There's always a risk. In the end the decision is how much does the person stand to gain vs. potential loss. How many people have negative vs. positive outcomes.

It's a difficult decision to put it lightly. I'd ask to talk with a variety of people who've had the procedure.

We'd love to hear how it goes as you move forward (or don't).
Take care,
Carol
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Hi Pam,
I can only tell you the experience my mother has had since her DBS surgery. Mom has had PD for over 45 years, that's a long time to be dealing with the slow progression of the disease. She was a perfect candidate for the DBS because she doesn't have any other issues, no dementia, nothing aside from PD. Also, the Carbadopa/Levodopa meds were able to calm her tremors and ridged muscles, she was on a very high dose.

The surgery itself was a 2 part process, first the brain surgery implanting the wires, and then a second one to implant the battery. Complete recovery was a couple months but the benefits have been more than worth it for mom.

Within days of the second surgery, the unit was set and adjusted and no more tremors. It has been amazing, the first time in my life I had seen my mom sit calmly in a chair without any movement. Her quality of life went way up, instead of having only a few "good" hours during a day, she has "good" hours all day long.

All that being said, the surgery doesn't stop or even slow down the disease and all the other symptoms are still there; lack of balance, swallowing issues, depression, etc. It's been 6 years since she had the surgery and we have never regretted having done it.

I'd recommend you check out the Medtronic website (medtronicdbs) and especially talk with a neurosurgeon that does the surgery. Get 2 or 3 opinions before you proceed.

For my mother, it was absolutely the best decision.

I hope this helps you as you make this very difficult decision with your loved one. At the end of the day, we do the best we can for our loved ones and trust God for the results.

G in New Hampshire
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The results of my husband's two DBS surgeries were both positive and negative. Both were done in a good local hospital by a surgeon experienced in the procedure to relieve moderate arm tremor. The first surgery was successful, but my husband did not turn off the device before sleeping for the night, resulting in the batteries' inability to recharge after a while. The second surgery was also successful, and the would appeared to heal well. A few months later, he died at 84 from sepsis. His surgeon said that even in a sterile setting, it is possible to contract sepsis. Although I have had several elective surgeries for various conditions, I would not have elected to undergo DBS if I had Parkinson's.
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Pam, I have no experience with this but did some quick research to learn more about it. There seems to be a reasonable chance of relief, but I think my considerations for allowing the surgery to be performed on a loved one would be these (although I'm sure you've already thought of them):

Age of the person, length of having PD, length and escalation framework of the tremors, how much the tremors affect daily life, prognosis of the tremor progression, co-morbidity factors, and whether or not dementia is present.

I did read as well about the side effects but didn't find any information on how often they occur, and the percentage of time they occur, and whether or not they're controllable, presumably by meds.

The potential for cognitive dysfunction and the apparent bi-polar like effects of depression and euphoria would be a big concern. Would additional meds be needed to control that?

I know only one person who has progressive PD but I don't know her well enough to raise this kind of issue. She's merely a remote acquaintance.

Sorry I don't have any more information on this. It sounds like you're faced with a difficult decision. I wish you peace in evaluating this situation and making the right decision for you and your loved one.
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My sister suffered from terrible tremors for many years. She reached her breaking point when she couldn't hold a spoon or fork to feed herself and had to use a straw because holding a glass splashed her drink all over herself. She was looking at moving into a long term care facility and she was only 55 years old! She had bilateral DBS and the results have been amazing! She is independent again and her depression is gone. There were a few infection's along the way which required additional surgeries. This has been totally worth it for her! A life changer for someone with severe tremors.
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My father had DBS about 8-9 years ago. He is now 83 y/o and has had PD for 15 years. The DBS helped tremendously with his mobility. Before DBS he could not turn over in bed, cross his legs and the freezing episodes were frequent. My Dad has actually had very few tremors with his PD.. The DBS gave him back his mobility for a good 2-3 years so that was wonderful!! There were side affects, though. My Mom and I have often said that his personality changed quite a bit after the surgery. He became much more self absorbed and basically more demanding, more emotional and, yes, the hyper sexuality was definitely there too. He began talking about sex all the time--something he never would have done before but most of the side affects faded as time went on. Additionally, his speech was significantly impacted too. He is now in a skilled nursing home--not because of the surgery, but because of the natural progression of his PD and he is experiencing dementia episodes. They put him on an anti-depressant about 18 months ago and it has helped wonderfully. I wish one of his doctors would have thought to do that years ago after the surgery. So would our family do the surgery again? I think we would. When he had it done it was just starting to be done more frequently but it really did help him even with the added challenges. Good luck with your decision!! it is not an easy one.
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If the loved one is up for it, I'd personally recommend a more natural approach first. By that, I mean switching from a carbohydrate-based diet (where the main fuel for the brain and body is glucose, or sugar) to a ketogenic diet, in which the brain and body feed off ketones (which are a fat-based form of energy). There are now exogenous forms of ketones available through a physician, which are thought to make “keto” adaptation easier. A physician who keeps up with the latest research should be familiar with this. You’ll find a lot of information about the ketogenic diet and keto adaptation on YouTube.
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Pam, my mom who has had Parkinson's for 15 years had the DBS surgery done about 4 years ago. It did completely take away her tremors. On the flip side, my sister and I noticed a change in her cognitive functions. I'm not totally surprised about this. It is brain surgery after all. I don't know how long it would have taken the cognitive issues to change without the surgery, but I am glad it helped her tremors and her dystonia in her feet.
I agree it's not for everybody and only your neurologist can make that decision as to whether or not it is a good option. Good luck as you go forward. Susan
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Pam~It is crap shoot at this point!
You have done all the research....the impact is different on everyone~No clean cut answer here for you.....
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Thanks for all the responses on DBS. I think it's going to take a while for the procedure to be perfected, seems like they are still trial and error at this point, judging from the responses.
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