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Topic DBS or no DBS Go to previous topic Go to next topic Go to higher level

By Knoosy On 2012.12.27 15:43

I just posted an introduction and some info on our story. My very close friend who is like family to me has advanced PD and is being evaluated and scheduled for DBS. He had some serious freezing episodes where he was unable to move and had to be taken to the ER. The pills don't work so well anymore and he has to take them every three hours now. He keeps forgetting to take them and started to be incontinent. The doctors told him that his only chance to keep living would be to have DBS. At the same time his mental status is declining and I learned that this may worsen more rapidly due to DBS. His cognitive abilities further declined after the mental evaluation for DBS. I try to reason with the doctors about cognitive issues becoming very apparent and the potential of him becoming demented after DBS, but they don't listen and just want to do the surgery asap. I don't know what to do. Do you have any suggestions? Thank you for sharing and all the support here.

By lurkingforacure On 2012.12.27 21:50

We have not had DBS, just so you know. I think it can be great for some PWP, but you have to keep in mind the old adage..."if you go to a surgeon, you are going to have surgery"...

There is a HUGE DBS chat room on yahoo, I think it has something like 800 members, so you will find a ton of information there. Good luck, this is NOT something to be done quickly or taken lightly.

By LOHENGR1N On 2012.12.27 23:48
Knoosy, Hi and welcome to the forum. Lurking has good advice check out that chat room (if you can have him there at the computer too so he can see the feedback). Many swear by DBS many don't and I don't have any experience myself with it personally.

However it can help some symptoms but not others. I can tell you it isn't a cure. The underlying disease keeps on progressing. For a Doctor to lead you to believe it is his last hope isn't right. It might prolong life from limiting falling injuries or other things I'm not aware of but as I said the disease is still progressing, still affecting our systems. It can buy a few years perhaps, perhaps not. I don't know how much you've read about this disease and it's effects on the autonomic nervous system as that gets more and more effected I don't think DBS helps much but I could be wrong. That's why Lurking's advice is so good talk to others in the chat. Get both sides of view those happy with it and those not. It's best to get that information straight from people with experience not Doctors (surgeons) who may profit from the number of operations done or web sites of companies that make the product as their view is to push the product.

Again welcome to the forum. Stick around ask questions you've found a great group of caring people here willing to take some time to helps others out on this journey. Take care, best of luck and hang in there.

By Knoosy On 2012.12.28 17:14
Thank you for your thoughts. Reading through the posts, I feel comfortable on this forum. There is so much combined experience and wisdom. I like this better than the yahoo forum, which I find a bit overwhelming, but I'll check it out to continue to look for answers.
It's sad that surgeons and companies care more about doing surgeries and selling their product than to really do what is best for the patient. My friend has a compression on his spine and now they want to do surgery on that too. I wonder if it may help to try some alternative less invasive things like physical therapy or a chiropractor instead of getting the knife out. According to research, anesthetics cause brain cells to die off and it's especially bad and irreversible in people with PD. I have read so much about DBS that my head is spinning and it seems very hard to find the right answer. It feels scary to just leave the decision up to the doctors because what if it causes more damage than good. Maybe I'll try to leave it up to the universe somehow and ask for guidance and the best things possible to happen. As all things happen for a reason.

By moonswife On 2012.12.28 20:36
Welcome Knoosy,
My husband had DBS in 2010. His story was different from yours, and the DBS did accomplish our goals. He had tremors so extreme that he lost 100 pounds in 2009. He shook 24 hours a day. He was wearing himself out. Now, tremor is NOT an issue. But as Al says so eloquently, it is not the answer for all, and the other symptoms still progress, or should I say ability regresses. Would he make the same choice again? Absolutely. Are the symptoms for our husbands comparable? Absolutely NOT.
A hug and best of luck making your decision together.

By lurkingforacure On 2012.12.28 20:39
If it helps, this is the gist of what I learned when we were first reading about DBS:

1. it is imperative that the surgeon have extensive experience (lead placement is critical, even 1mm off can make a huge difference!)
2. there is a facility in Canada that does DBS on the pineal part of the brain as opposed to the STN where it is usually done, and I read of one lady who had improvement in balance and gait when she had this type of DBS done; however, it was short-lived and she declined rapidly after the surgery :(
3. anesthesia is very hard on PWP as you noted
4. if you have DBS (or any brain surgery), you are automatically excluded from pretty much every clinical trial out there (this nixed it for us, at least at this time)
5. most of the folks I read about who had DBS woke up with speech problems and very few were able to reduce their meds significantly after the surgery

You need to read as much as possible to see what is best for your husband. I know that they are really working on trying to make sure that only those who are most likely to benefit from the surgery get it, so the requirements to have the surgery continue to tighten up. Good luck, this is a huge decision and it's so very scary.

By Reflection On 2012.12.29 01:28
I'm going to address the possible spinal surgery - you might check out this article:
I'm not sure if you can get it if you are not a health professional - bottom line is "Spinal surgery is associated with a greater than 50% risk of early and late complications in patients with PD. Asterisk indicates that the correction of fixed spinal deformity with either a short- or long-segment fusion (with osteotomies) should be tailored to the individual patient, taking into account the patient's spinal balance and medical comorbidities.... In our experience, patients with PD who undergo spinal surgery have a high rate of both acute and delayed complications. Nonsurgical management is preferred in this patient population. In addition, DBS can be considered in the correctly selected patient as an option for the treatment of some spinal deformities associated with PD. However, DBS is not universally effective in treating camptocormia.

Short-segment spinal decompression and fusion may be considered in patients with coexistent camptocormia and spinal stenosis with myelopathy or radiculopathy. Long-segment spinal fixation procedures should be performed sparingly due to the very high complication rates reported in the literature."

It's hard to know what might be best, but proceed with caution.

By Knoosy On 2012.12.29 09:35
Hello and thank you for the replies.
I didn't know that about the spinal surgery. Will have to find out exactly what he has and what the doctors are planning to do.
In regards to the DBS surgery, I'm also concerned about the speech problems. My friend is very articulate and witty. Speech is one of the abilities that is quite intact. It would be terrible if that got compromised by DBS.
My gut feeling tells me to stay away from the surgery and work on finding the ideal pill regimen instead. My friend is very trusting towards his doctors and doesn't bother doing any research. It's part of the diminishing executive abilities. He is also rigid in his mind so that even if I tell him about the risks, he thinks the doctors know better and puts it out of his mind. I read that the care after DBS can be very extensive with many visits to the doctors and complications due to the device not working properly. I feel that DBS would complicate and maybe even worsen things especially if he'd still have to take as many pills.

By cmonge On 2012.12.29 14:08
My husband had DBS two years ago. It helped only with the tremors but it did help with that tremendously. The disease still progresses and yes, there are problems with speech. He has to have adjustments every 3 months or the tremors start to come back which leads me to believe that the disease is progressing fairly rapidly. He still has cognitive decline and incognitence. It's not a cure but it does help. I am glad to hear about the Yahoo group. I am going to check that out.

By parkinit On 2012.12.29 21:25
Reflection -

Thank for posting the information about back surgeries. My spouse has been recommended for surgery, but I could tell the surgeon was hesitant to recommend it and asked us to consult the neurologist first. He even suggested other alternatives such as massage, a chiropractor, etc. However, my PWP's neurologist said from his perspective it was fine.

By mytngenes On 2012.12.31 22:18
My husband had DBS in 2006. He never had a tremor and his main Parkinson's symptoms were rigidity and pain. If you ask hubby, he will tell you the DBS "worked" and he would be "bedridden" without it. But I see it differently. Of course, the disease has progressed these 6 yrs post DBS so it's difficult to differentiate between the natural progression of the disease vs the DBS "not working". My hubby was not able to reduce any meds after surgery and now takes a LOT of 50/200 mg Sinemet, every 3 hrs alternating between 1 tab/1.5 tabs/2 tabs. He has a lot of problems with "freezing", which DBS does not address. He still has rigidity (which DBS is supposed to help with) and has a lot of muscle pain and weakness.

My advice to you would be to determine what are your hubby's main symptoms (or ones that cause him the most difficult) and research to see if DBS helps with those specific symptoms.

God bless you as you wrangle with this decision.


By cmonge On 2013.01.01 00:45
I see it differently too. We are ringing in the New Year by not speaking because PD has reared its ugly head in mood swings tonight. This DBS does not help. It is painful to endure these days and the abuse one has to take because of this. Its hard to respond emotionally to someone and care for them who does not respond to you. So if you are looking for help with the tremors, then DBS is an answer. But if you are looking for help with the worse symptoms that are related to moods and cognitive decline, sadly you won't see that at all.

By Knoosy On 2013.01.05 19:12
Thank you for all the comments. They affirm what I was thinking which still doesn't make the decision easier, but still helps.

By blue2 On 2013.01.31 11:05
The National Parkinson Foundation has a booklet called "Parkinson Disease: Guide to Deep Brain Stimulation." You can get it from them by calling 1-800-327-4545. You ca find out if you are a good candidate by visiting the Univ. of Florida Movement Disorders center at mdc.mbi.ufl. edu/surgery/am-i-a-candidate-for-deep-brain-stimulation-intro.

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