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How effective is DBS and at what stage of PD should it be performed?
My name is Dim from Bulgaria and I was diagnosed with Parkinson's disease 15 months ago, but I had the first symptoms more than 4 years before the diagnosis. I'm on medication like Mirapexine, Sinepar, Segalia and some others. The dose of these medications have been increased several times. The side effects of the medication are awful and they are getting stronger with the increased dose of the medications. And I have the most of them. I’m 52 and still actively working in the Armed Forces of my country Bulgaria.
Recently I find out about Deep Brain Stimulation as a method of treatment for the patients with Parkinson's disease. The closest facility where the procedure is being offered in is a hospital in Istanbul, Turkey by dr. Ali Zirh, who had performed approximately 1300 successful DBS surgeries.
Last week I visited the hospital in Istanbul and was consulted by dr. Zirh. According his prognosis, my condition will rapidly deteriorate in the next 2 years. His opinion was that I'm a suitable candidate for DBS procedure and I should be operated within a year time. I was provided with huge amount of information regarding the procedure and I feel lost.
After research hundreds of pages, I'm still not fully convinced with this DBS procedure. And I have doubts when, in which stage of the disease it should be performed.
Sorry for my English. It is not my first language, but I hope you were able to understand my questions.
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I appreciate your comprehensive description of your DBS treatment, @tedalmon. You have provided a helpful summary of the procedures and your results. This is great for others considering DBS, as everyone wants to know what to expect. While everyone's experience might not be the same as yours, this does provide a background for anyone considering DBS.
Was there any way that you prepared for this procedure?
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2 ReactionsI am sorry to hear about your PD diagnosis. My husband, who is 60, is in the same boat. Recently, the doctors suggested DBS for him; however, my husband is reluctant as over the past 3 years, he has had 25 different surgeries for various health issues and one caused him a serious staph infection. Although he appears to have beat the unknown staph, we were told that staph infections can go dormant in the body and expose themselves at any given time. My husband fears that if he undergoes DBS, the staph may return near his brain and end his life. Infectious disease was never able to identify the staph my husband had, but every time he has a surgery it is brought up. I have been doing research to try to help him. The Levo Dopa or Living La Vida Loca, as my husband called it, caused lots of side effects. He refused to take it, so they put him on Ropinirole. My husband mainly has problems with his right side. He has tremors in his right arm and hand, his right arm just hangs and his gait tends to drift to the right. He has a difficult time sleeping, often up and down many times during the night to use the restroom. He also experiences loss of balance and lots of pain. He has managed to keep his job as he works from home. We too have concerns regarding DBS and feel that it might be premature right now. At this time, my husband is taking Ropinirole, Tramadol, Ibuprofen and Tylenol to attempt to control his symptoms and pain. There are many clinical studies going on right now. One that interests me is the one being studied in Japan and the US in which they are developing iPS cells or pluripotent stem cells. It sounds promising. The stem cells are from the patient who needs treatment and they are injected back into the patient's brain where they start to produce dopamine on their own. Since they come from the patient, there is no need for immunosuppresant drugs. You can find information about the study via the internet.
The other thing I have been researching is mucuna for the treatment of PD. I am trying to find the best product to take at 45g daily. One more thing---look up the use of creatine monohydrate and its effects on the brain.
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1 ReactionThank you, everyone, for your comments and information on DBS! It was beneficial.
Terry
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3 ReactionsJust know you are not alone in this battle against PD!
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3 ReactionsWhat PD symptoms does Deep Brain Stimulation address?
Here's some Mayo Clinic information on deep brain stimulation that may be useful, @nvbucko:
- Deep brain stimulation https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562
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