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Topic Deep Brain Stimulation Go to previous topic Go to next topic Go to higher level

By GrammyJoan On 2009.06.14 10:48
Has anyone in this forum had DBS? My husband is thinking about having it but the thoughts of it scares me. We've heard alot of good things about it but I'm wondering if there are side effects or risks to having this surgery. Thanks.

By dkleinert On 2009.06.14 11:06
A friend who's husband has been diagnosed for 3 years had the DBS. Now he has dementia with a vengence. His motor abilities are improved, but his cognitive resources are so diminished - she wishes they had not had it done. I am sure there are many of you out there with positive outcomes - this is my only exposure to DBS. Because of this, and because my husband already has dementia, we won't be doing that. You might want to read online also for other information. Get more than one opinion before you do it. Just suggestions. Hard decisions to make....God Bless you.

By karolinakitty On 2009.06.14 12:25
I know someone who has had DBS for Torettes but not PD. It has worked for his torettes with no serious side effects. He doesn't cuss at ya as much as he used to or say off whatever comes to mind. I know that his DBS is in a diffrent area of the brain than for PD.... He said he checked out all the options before doing this. He was pretty bad and depressed and isolated himself alot due to the reaction of others with the barking and very ugly language.....My suggestion is to do the same.... read all you can....

By lostdaughter On 2009.06.14 14:19
My mom had DBS three years ago and it helped tremendously with the dyskenisia. She didn't feel she had much choice because she had lost so much weight due to the involuntary movement. She was down to 86 lbs. and still losing.

Having said that, I often wonder if the DBS surgery had anything to do with the dementia problems she's now experiencing. Once she had the surgery she seemed to suddenly think she could do whatever and she has no fear of falling or hurting herself.

I would also recommend getting more than one opinion, especially if the PD symptoms aren't very bad. I'm not sure there are any stats on long term effects and I sometimes feel like Mom is a guinea pig when she sees her neuro because the stimulator seems to be his primary concern. Most of the time I feel like he isn't concerned about the overall picture.

That's just my experience and perspective. Hopefully, others can offer more input.

Best of luck whatever you decide.

By annwood On 2009.06.14 17:20
We have had this discussion on this forum in the past and there are mixed feelings. First DBS does nothing to stop or slow the PD but it does minimize the symptoms for a while. It is a very hard surgery and requires a great deal of follow-up to get the electrodes adjusted properly. It is actually two surgical procedures. The first one places the electrodes in the brain. The patient has to be awake for this but is given meds to calm them. The procedure takes about 6 hrs. The second surgery is usually 2 or 3 weeks later and at that time the batteries are placed on either side of the chest and connected to the electrides in the brain.

I can only give you my experience. My husband had the surgery 4yrs ago and it was a disaster. He remained in the hospital for several days, lost the ability to talk (came back after several weeks of speech therapy) and he never was the same after the surgery. Within a year he had developed severe dementia and he died 18 months ago. We have 2 friends with PD who have had a similiar experience. Different docs and different hospitals. I wish my husband had never undergone the procedure but he felt as if he had to give it a try. He had maxed out on the pD meds.

That being said, I am told that there are good results in some people. I am sure they are continuing to improve the procedure. Please research, research, research. Make certain that you have a physician and a facility that has done many of these. There is a learning curve.

Good luck.

By chacha53 On 2009.06.14 18:13
Grannyjoan, my husband has biolateral dbs, is your husband's PD tremors or rigidity? My husband had no movement, and the dbs did not help with his PD much but, if your husband has tremors ,and if all goes okay it should help. If I had studied more about the surgery before Terry had it ,I would have tried to talk him out of it. Poor little guy has wanted to try what ever he could to have a llife, now he is continuing to fight for his life, since Jan of this year I have thought he was going to leave me just any time. He is still holding on, he is in the hospital here with pnemonia in both lungs. Everyone continue to pray that God will not let him suffer! God Bless you all, charlene

By gilly On 2009.06.14 22:16
I have no experience with DBS. I just wanted to offer my prayers for Charlene's husband.

By lurkingforacure On 2009.06.15 09:54
Annwood is right, you must research DBS very carefully, it will not work for everyone. Our two cents:

1. getting a good doctor is key: get one that has done LOTS of these. Get references from folks who have used him/her, ask them all about their experience and if they would do it again. A good site for this is yahoo's DBS group. I just learned that Ali Rezai, who used to be at Cleveland Clinic, is now at Ohio State...he is one of the best, if your PWP qualifies for this surgery in the first place. I believe he has done something in the neighborhood of over a thousand DBSs. (I have no ties to the guy, I just know if we ever went for this, he'd be at the top of my list).

2. getting a good programmer is almost as important as getting a good neurosurgeon, maybe more so. The programmer can make the difference between the thing working great and not working worth a damn. Same thing, check the programmer out, how many has he done, what success rate, who does he normally team up with (and use that neurosurgeon since they are used to working together, after you check HIM out!).

3. they are continually tightening the restrictions on who can have this surgery....good health other than PD (you have to be able to have surgery in the first place), and no dementia, and no depression. It's a very small group of PWP that are eligible for this, in my opinion...and what this means, is that it may force PWP to have the surgery earlier, before the symptoms of dementia and/or depression have a chance to show up. Is that good or bad? I don' know.

4. Keep in mind the news article that came out a few months ago where they basically did a DBS-type stimulation on the spine, instead of inside the brain, with very good results....much less invasive, much less risky, much cheaper, etc., etc. I realize that these procedures were done on rodents, but still....don't know where this research stands, but you could google it if you were interested in this as a possible alternative. If it proceeds into humans, you might could get your PWP into a trial for it.

Good luck, this is a huge decision, but fortunately there is tons of research out there.

By myhubbywithpd On 2009.06.27 18:33
My Husband had dbs installed in 03/2000 and has done well with them. The only major issues we have had is when the batteries die. This past time it took 2 months to get one of the batteries changed and we got a glimpse of what he would be like with out them. We do not want to go there again. What we do know is not everyone can program them correctly from personal experience and having lived in 5 different states since receiving them. A neurologist needs to program the dbs after they are installed not a Medtronic Rep. Do not let the neurologist leave it up to a rep the neurologist needs to monitor what is happening and make adjustments based on his knowledge as a neurologist.

By annegirl1 On 2009.10.10 02:09
My husband had on put in. The surgery was up in Los Angeles. The surgeron put the stimulus in the normal part of the brain, but it didn't work, he then tried two other spots, those to did not work, he then left the opperating room, went across the street to his office and re-computed and came and put it in in an area that is not usually Parkinson's. A month followup we discovered the DBS did not work. We are now presuing the DBS to be removed after 5 years of a piece of metal in you brain, doing nothing my husband wants it removed.

By annwood On 2009.10.10 10:45
I have always believed the DBS accelerated my husband's PD. Atleast I know he was never right after the surgery. I would be surprised if they would consent to a surgery to remove the device. There would be several risks in doing that, including a stroke. I don't think it is doing any harm being in there but I am not a physician.

By packerman On 2009.10.15 10:31
my DH had DBS two years ago. he participates on several forums daily.

he says he finds to be the most informative and knowledgeable.


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