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Topic DBS Go to previous topic Go to next topic Go to higher level

By maryann54 On 2009.12.06 14:35
Hello. I am new to this forum. I have been caring for someone with Parkinson's for nearly 4 years. Does anyone have any experience with DBS?

By annwood On 2009.12.06 18:13
DBS (Deep Brain Stimulation) is generally used when a person has reached the limits of how much medicine they can take. It does nothing to cure or slow the disease but it does reduce some of the symptoms and in many cases it does allow for a decrease in medications. In the surgical procedure electrodes are placed in the brian and stimulators on either side of the chest wall. A continuous, slight electrical current is generated to the brain and the charge is regulated until the proper amount is being delivered.

There are several past posts on this forum dealing with DBS. I would advise you to search them for more answers.

By packerman On 2009.12.07 13:49
we are 2 years post surgery.
my husband visits www.DBSsurgery@yahoogroups.com.
there are pre & post op patients of all ages & stages.
they should be able to answer many of your questions or send you to other sites for more information.

good luck,
Pat

By maryann54 On 2009.12.10 19:18
Did it improve your husband's quality of life?

By packerman On 2009.12.11 11:56
yes.
he has very few tremors now and is completely off Sinemet.
he does take Requip XR a few times per day.

he still freezes when he is off, but DBS was never going to address that issue.
he still has balance problems and falls sometimes.

all-in-all, he is very glad he did it and encourages others to check it out.
but i know some who have not had as much success.

he is 52 and was diagnosed at 37.
he sees docs at Vanderbilt Movement Disorders Clinic and had his surgery there.

if you have any other questions, please feel free to ask.

Pat

By maryann54 On 2009.12.12 12:16
My husband is 62 and has been diagnosed for 4 years. He is a mechanical engineer. We are seeing docs at the Washington University Movement Disorders Clinic in St. Louis. He asked them about DBS and they said it was too early.
He is taking lots of meds. About 5x's per day. Sinemet and comptan. As well as some drug for depression and anxiety. He also takes sinemet ER at night.

He is still working. I would like to get him off the drugs and think DBS might be the right solution. The drugs have lots of side effects.

Everyone we have talked to says it's giving them their life back. We have joined a support group.

The past couple days his parkinson's finally seems under control. However, it's touch and go.

Hoping that DBS is the answer. Did the operation take long? I understand it's done in 3 procedures.

BTW balance is definately and issue with my husband. Thanks for you comments.

By packerman On 2009.12.14 10:27
Maryann,
everyone is different. some respond well and some don't (Annwood might want to weigh in about her husband's experience).
there are several physical and mental tests to go thru before you can be considered for surgery.
yes, his PD must be "severe enough" to be considered for the surgery. your husband may not be at that point. the docs at the MDC will be able to tell you better.
yes, it's a 3 part procedure: place the surgery anchors (outpatient), install the DBS and test it (overnight), install the pacemaker-type regulator device in the chest (outpatient).
don't want to create false hope. it has worked well for us. it doesn't work for everyone. that's one of the good things about this forum. it has helped me understand that.
hugs,
Pat

By annwood On 2009.12.14 15:28
I think that I should pass on this topic. I understand that DBS does work very well for some people. I don't think there is any way to determine who will and who won't do well. Keep in mind that it has been four years since my husband had the procedure and I imagine there have been many advances in that time. Good luck and prayers.

By dewigger On 2009.12.15 23:11
My mother also sees a Neurologists at the WUMDC. They are suggesting DBS as a treatment for her, however, she has been diagnosed for over 10 years and is over 70. I would love to compare your experience with the Wash U center if you care to email me at dewigger@gmail.com. Thanks

By mytngenes On 2010.01.16 22:21
My husband, age 57, had DBS 3 yrs ago (dx'd in '98). He has not been able to reduce any of his medications-and he is on a lot. Short-term memory has gotten worse since the surgery--is this a side-effect of the DBS, or merely advancing PD? Who knows....he also has been exhibiting some inappropriate behaviors since the surgery, but once again, this may be due to the advancing of the disease and/or the meds he is on. I don't know.

My advice to anyone comtemplating DBS is to do your research and really communicate with his drs.

~Sherri

By annwood On 2010.01.17 11:32
Hi, Sherri
Sorry to hear about your husband's problems. There is a great deal of posting here about DBS so you may want to look up some of these past posts.

DBS is still in it's infancy stage and there can be many problems. I only know of four people who have undergone DBS and none of them have done well. That being said, there are supposedly some people who do well with it. My husband had the same experience as your husband. He was never able to reduce his meds and he was never the same after the surgery. I knew when he woke up post op and looked at me that he was not right. It was the look in his eyes. At the 6 month testing he had lost 50% of his intellectual capacity. Pre op they do tell you that there may be a "mild" decline in intellectual functioning. In retrospect it was not the right thing to do but we both had such high hopes.

As you know, DBS does nothing to stop the progression of the disease, it is just to hopefully reduce some of the symptoms. You may be seeing a progression of the disease. Have you discussed your concerns with his neurologist?

By mrsmop On 2010.01.17 14:07
My husband had DBS about a year ago. It stopped him from complete freezing and made him much more mobile. His meds are almost the same as before the DBS. After a year, my overall feeling is that the programming is extremely important. He's been reprogrammed about 10 times, due to fluctuations between dyskinesias and stiffness and rigidity. He was just reprogrammed again last week, and I hope I'm not speaking too fast, but I am encouraged for the first time. A research project he was in helped to come up with the most recent settings. If there are problems, be persistent. His speech declined somewhat but he is going to start a speech therapy program designed especially for parkinsonians. He is probably more disorganized than before, and current memory may be slightly worse. Who knows if this is due to the DBS or the progression of the Parkinson's.

By lostdaughter On 2010.01.18 22:16
My mom just had stage 2 of her second DBS surgery. Last spring she developed an infection that settled on the hardware put in several years ago so everything had to be removed and she's starting over again.

My personal feeling is that DBS helps a great deal with dyskinesia but not much else. When mom had the first surgery it was pretty much a necessity. Her metabolism was so high from the involuntary movement that she was losing weight rapidly and she stayed worn out from constant movement. The DBS helped tremendously and she's been able to maintain a fairly normal weight. When the hardware was removed last summer she didn't go back to the same level of dyskinesia she had before. The only thing I noticed was some slight movement in one leg. I thought she should wait a while before having the surgery again but that was out of the question as far as she was concerned.

Mom's mental capacity has gotten worse since the first surgery but that may be due to normal progression of the disease. She has COPD as well so I'm sure the lack of oxygen to her brain plays a part in her inability to think clearly.

As others have already said, DBS doesn't work for everyone. It's done in stages which require anesthesia and I think one should consider how that's going to affect the patient. It's definitely not a miracle cure. Mom still takes the same meds she was taking prior to the first surgery and several of those have been increased.

By LOHENGR1N On 2010.01.19 00:05
I don't have any firsthand experience with DBS. I know a couple of People who have had it. Their experiences haven't been what's advertised. One lost His voice during/after the procedure 3 years ago and has never regained it. The other has a trade off of walking around squinting (eyelids almost closed) with some dyskinesia to rid the dyskinesia the power needs to be turned up but when it is turned up his eyelids close and he can't open them to see. Before opting for this I would recommend researching the results on Parkinson's Patient message boards or chats. Try finding sites that aren't connected to company's that produce these units. Remember they are trying to sell their products and will slant the results in favor of the DBS. Although the procedure has been around for several years the jury is still out as to long range effects of DBS. Simply because there isn't any data of what happens 10, 15 or 20 years down the line.

It now doesn't seem in most cases to reduce medication levels although some can nor does it stop progression of the underlying disease. One facet I don't see discussed or even brought up is how many "controlled seizures" can one section of the brain endure before there's trouble? Really if one thinks about it these wires introduce an electrical current into a point in the brain, this current floods that small section. A seizure is basically a current flooding a part of the brain. Again no data available on this either. I'm not trying to scare one away from DBS or trying to discourage anyone seeking help from it. I am saying that in the case of DBS the old adage of Buyer Beware holds wisdom. This is brain surgery after all. The decision is after all personal to each. Just weigh the pros and cons, check and recheck purported results and then make your decision based on Your situation and the information gathered from that research. Take care, best of luck and hang in there.

By mrsmop On 2010.01.19 00:34
I was not expecting to see as many negative posts about DBS as I see here. When the PD meds were no longer helping and he was almost wheelchair-bound due to frequent freezing, he felt there was nothing to lose by having the DBS. Even with the programming issues he had, the docs doing the programming really wanted to optimize his settings. His mobility has improved, which was the most important thing for him. For those who had DBS with negative results, I would encourage another opinion/consultation at a well known neurological center.

By annwood On 2010.01.19 01:08
I am pleased that your husband had good results. As you can see from the posts here he was fortunate.

I think that once the surgery is performed there is really no way that another opinion is going to do anything. One certainly wouldn't consider having it redone and I don't think any reputable neurosurgeon would consider it.

Yes, please have this surgery done in a center with a good reputation. You want someone who has done alot of these. Forget about staying close to home just because it can be performed locally. You definitely want the best. My husband was a physician and he chose a very reputable center but it still didn't work. The luck of the draw, I guess.

By Emma On 2010.01.19 05:53
At one point along our journey with PD my husband was evaluated for DBS but was disqualified because of his dementia. I'm glad we didn't have to make the decision.

By mrsmop On 2010.01.19 11:02
Second opinions after DBS are done and can be successful. On occasion, the leads are not properly placed, and if corrected, can make a big difference in the outcome. In fact, when my husband was having trouble with the programming aspect, his neurologist offered to refer him elsewhere if he wanted that. Finally, after months of reprogramming, his dyskinesias are gone, and he now seems more stable. By the way, Yahoo Groups has a forum just for DBS. I have found it helpful.

By BARBRUS On 2010.02.08 16:44
I know that DBS is touted as a wonderful thing.... however - we were warned of the things that could go wrong during the operation - our surgeon had done over 300 of these with only 1 having severe complications - one of the best in the country and we became #2! My husbands vessels in the brain are larger than normal ones and when they put the probe in it punctured a vessel and produced a bleed in the brain (hemorragic stroke). They stopped the operation immediately and 4 weeks later finished it. Now they were only able to complete the one side and no surgeon is willing to do the other side (I don't blame them). Just remember, the DBS only takes you back a few years in the progression of the disease and then you begin the progression anew. The side with the DBS does work better than the other, but after a while it just doesn't make any difference anymore.

By annwood On 2010.02.08 22:22
Dear Barbrus,

Thank you for your post. I am sorry that the DBS did not work and the complications were so horrid. I could not agree with you more about your warning and I have made it myself here in the past. Even if the results are favorable I think you would agree that it is a very difficult surgey and one that should not be entered into lightly. This is to mask the symptoms temporarily and does absolutely nothing to halt PD. Eventually all of the symptoms and more return.

My husband went to a very good, world renown center for his DBS. He too suffered a stroke during the surgery but this was not confirmed until his autopsy two years later. He required weeks of speech therapy, lost 50% of his cognitive function, developed a rapid form of dementia and was never able to reduce his meds.

I understand that many get relief of the PD symptoms but of the three people I know who have had DBS none of them did well. I hate being a "wet blanket" but we all come to this forum with our own stories and they are often conflicting. Like you, I just want people to be fully aware of the serious complication that can, and do, occur.

By Newcaregiver On 2010.02.09 08:32
Annwood and all: I appreciate your willingness to be very direct and frank about DBS (and anything, really!). You see videos showing how wonderful it is--and probably is in most cases, but deciding on any surgery should be done with lots of caution. I think in general people seem to believe surgery is the answer to any problem. I witness people having surgery so quickly without really weighing the risks/benefits. I appreciate you all telling it like it is so that we all can step back and make decisions like this very carefully.

By annwood On 2010.02.09 10:05
Thank you. I really just want people to step back and look at this before electing to have DBS. ANY surgical procedure carries risks and we have to weigh the risks vs. the benefits. It is a personal decision but should be made with full understanding of the problems that may occur. I left the decision totally up to my husband with the understanding I would support him either way.

By packerman On 2010.02.09 17:22
my husband did do his homework, but he was so desperate to "have his life back".
i'm just thankful that his surgery was one of the success stories.
but you're right--he warns people of possible complications every day on the DBS Forums.
Pat

By annwood On 2010.02.09 21:40
I am happy to hear that your husband's surgery went well.


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