DBS DOESN'T SEEM TO WORK

My son, 56, diagnosed 7 years ago, suffered terribly with violent tremors and wild dyskinesia for the past few years. He was completely housebound, mostly bedridden, and suffered broken bones in dyskinetic falls. He was sent for discussion re: DBS 4 years ago, finally it was approved and bilateral surgery done a month ago. The generator was implanted 12 days after the first surgery, and he was turned on the next day. His levodopa/carbidopa dosage was kept the same, every two hours. First week was very good, second week less so, third week and ever since very bad tremors have returned for many hours a day, whole body shaking, hands pounding 6" up and down, head banging up and down on pillow that make me afraid something could be dislodged. They are saying it's because his disease is severe. I realize that, but most everything I've ever read including other patients' experiences say it works, is amazing, gives one back their lives, turned back the clock on their disease, etc. There's a stimulation system implanted in his brain. Some symptoms are quite a bit better, but not the tremors. Why? Thanks in advance for your input.

11 Replies

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  • He is on the same amount of levadopa and his dbs is on? Check that out,! It sounds really wrong. Levadopa can give you tremors if you take too much. We are not medics but it sounds like he is severly overdosed. I so feel for him.

    A quick look at the studies. People are on 30-50% less after dbs,. Some here will know from experience. . You need another neuro!

  • I had DBS in Sep15, the results have been a bit mixed. Initially, I had much less off time, but this has returned to pre-operation levels now. Also, I was told by my neurologist that the operation had limited success with tremors, fortunately I do not suffer with this. I would suggest that the programming for your son is wildly wrong, that is why his dyskenesia is so bad. The programming, and medication, can take up to two years to balance properly, so I am still hopeful. I will be see my neurologist tomorrow, 21st Feb, to try and get this right. I will let you know what happens...

  • Hi Andrewij, I'm so sorry you are at pre-operation levels. That's kind of like my son. The DBS seems to have helped with his dyskinesia, it's the tremors that have come back. I pray the dyskinesia doesn't, it was so bad it was dangerous. I had heard it all takes time, didn't know it could take as long as two years, tho. This gives me hope, too. Thanks for responding.

  • Thank you, Hikoi. I will take this up with the doctors. Others have said being turned on immediately after generator implant is wrong, people usually wait until they've healed. Do any studies address that as well? Have you had DBS and if so, how is it going for you? Thanks.

  • Lorelei12,

    I truly feel for you and your son that is suffering. Are you in the U. S.? Please check on the Internet for a doctor in Gainsville, Florida. He is considered an expert in movement disorders. He has been on TED talks, etc. Personally I have not dealt with him.

    Best of luck and hope that your son is able to find relief very soon!

  • Hello Puddlejumper, thanks for responding. We are in California. I've heard of Dr. Okun, read some of his articles, and I think I've seen him give talks via computer. We will keep trying. P.S. Love the picture of your kitty.

  • To get some other advice

    Try here parkinson.org/find-help/hel...

  • Thanks, Hikoi

  • My visit to the neurologist was mixed today. It appears that the right side electrode has been inserted in the incorrect location of my brain, therefore it is totally dependent on medication. The left side electrode has been inserted correctly. The result of this is that I have to take more medication than I should have to because the right side electrode is ineffective. This causes dyskinesia on my left hand side as more medication than needed is being taken than required, and balance problems because the left and right sides are not synchronised. I cannot have an MRI scan to determine the correct location of the right side electrode in my brain, because of the metal already installed in the DBS operation. Therefore my neurologist and surgeon will have to examine previous scans to determine what, if anything, can be done. This results in the following scenarios;

    a) Surgery will be needed to relocate the right side electrode to the correct location, so that it will work properly. This will be the best case scenario, as less medication will be needed. Dyskinesia will be greatly reduced, and my balance will be improved.

    b) The right side electrode has been inserted in the correct position, and the brain is or responding to the electrode.

    c) The correct location of the right side electrode cannot be identified from previous scans, therefore nothing can be done.

    Obviously, I am not keen on having a second brain operation, however this is my best choice, as the operation will have been a waste of time otherwise. My neurologist has said I will have to “muddle along” until they decide the next step. Meanwhile he has adjusted the controller to give me maximum control of my left side, to improve my mobility during my off-time, and overnight “freezing” when I am fully depleted of medication. This has helped a little.

  • I pray the easiest solution will work.

  • I am so sorry. At least now you know what is wrong.

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