How effective is DBS and at what stage of PD should it be performed?

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?

I 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.

Thank you, everyone, for your comments and information on DBS! It was beneficial.
Terry

Just know you are not alone in this battle against PD!

What 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

Has anyone looked into dbs? If so what do you think about it

Hi @boatman12 - I moved your post to join this discussion on the effectiveness of deep brain stimulation (DBS) surgery and in what Parkinson's stage it should be done. Hoping these members can address your question about their experiences with DBS and what they think about it.

Hoping members here such as @hopeful33250 @dpgigov71 @kathleenandbob @eliz722 and others can talk about what they have seen with DBS in themselves or a loved one, or what they have read about it, and what they think about it. I presume you are considering this surgery in the near future, @boatman12? If so, was this surgery proposed by your current neurologist?

About a decade ago as best I remember, I was diagnosed with essential tremor as a result of shaking in my left hand that had progressed after a few years, I was treated with all available drugs to include carbidopa/levodopa and a host of others, none of which seemed to have any effect on the condition. Primidone seemed slightly effective temporarily but, as with a host of others, the benefit proved short lived.

Eventually, the tremor spread to my right where it became much more disruptive to my life in general, particularly in my newly retired status expecting to concentrate on golf. I had also relocated to Florida and become a patient at the Mayo Clinic in Jacksonville.

After a battery of familiar tests, they also did a DatScan which showed a dramatic deficit of Dopamine on one side of my brain resulting in a diagnosis of Parkinsons, I have since learned that it is possible to have both afflictions, of which I may be a lucky example. After a period where I retried various regimens of C/L the tremors only progressed to the point where they were quite disruptive to many normal activities and fatal to golf. My PCP asked me if I knew about DBS, which he claimed to have dramatically improved several other of his patients with PD, After some research including ultrasound ablation, I was admitted to the testing/screening program for DBS at the Mayo where focused ultrasound is not offered. After a period of testing to determine if I was a candidate, I had the first session of my DBS experience in June of 2024.

To call the procedure, which was only for my right side, successful would seem an understatement as my tremor in my dominant hand was dramatically reduced. The second surgery, for my left hand followed several months later with high expectations, I should probably add that my right-side tremor was more of an "action" tremor, while the left side was considered of the "resting" type.

The results on my left side were much less effective in spite of several "adjustments" with the Nurse specialist, two of which were attended by a representative of Boston Scientific, manufacturer of the equipment. Following the second surgery I also developed an impediment in my speech which would have been a major concern during my career, but which is nonetheless troubling.
In summary I would still classify my DBS experience as successful but not completely meeting my hopes/expectations which perhaps could/should have been managed more proactively, for which I blame myself. Given the choice I would do it all again, but offer others the advice of more thorough research and consideration than I exercised. Good Luck!

@tedalmon

I appreciate your detailed response regarding your DBS procedure. I think it will benefit @boatman12 in weighing the pros and cons of such a surgery.