Looking for Information on Deep Brain Stimulation

Hello @sainath

Here is a link to Mayo Clinic's website regarding Deep Brain Stimulation in the treatment of Parkinson's, https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562

Are you currently considering this procedure in order to minimize your symptoms?

Teresa

Hello Teresa,
Thank you for your prompt reply. Before considering this procedure I would like to get an evaluation on my condition. I am presently on vacation in the USA in Orlando till 15th May 2018 and then will be traveling to St. Paul Mn and will remain there till 24th July 2018. I shall be contacting you in due course. Meanwhile I shall go thru the link forwarded by you. I will be returning to India on 25th July 2018.

Thanks & regards
Sainath

@sainath
Hello Sainath:

It appears that there are doctors at the Mayo facilities in Florida and Minnesota you can evaluate and advise you regarding this procedure. I wish you well!

I look forward to hearing from you.

Teresa

Hello, @sainath -- just wondering if you ended up setting up an evaluation of your Parkinson's during your time in the U.S.? Are you still thinking about the possibility of deep brain stimulation?

I understand that Rochester usually uses Medtronics, Jacksonville uses Boston Scientific, and Phoenix uses Abbott. I'd like to hear from anyone who has had these newer devices. My DBS will be in Sept.. I need to have it done asleep and have requested Boston Scientific. with Dr. L who has kindly accepted my wishes. Still would like to hear from anyone.who has had it done asleep and/or w/ Boston. Thank you!

Hello, @leftylucy - glad you've joined Mayo Clinic Connect. You may have noticed I moved your post to this existing Deep Brain Stimulation (DBS) discussion so that those interested in this topic can convene in the same place. Simply click VIEW & REPLY in your email notification to get to your post.

With a deep brain stimulation coming up in September, it makes sense to talk to others who may have had the same type of procedure and get their input.

I'd like to call on @bjmiller @hopeful33250 @jshdma @coolnacart1892 @maxaz1 @sainath @patch @steeldove @orval for their input on whether they (or a loved one) had DBS asleep or if the Boston Scientific DBS device you mentioned was (or will be) used in their case.

Will you share a bit about the symptoms that prompted your doctor to recommend a DBS? How are you feeling, leading up to it?

I was diagnosed with PD 9 yrs. ago. I had a tremor on my left side. Soon after I developed foot drag on the same side. My symptoms have progressed to include dyskinesia, leg pain - dystonia? I take 1 - 25/100 C/L 6 times per day. I am pursuing DBS at Mayo and Dr. L was kind enough to agree to use the newer Boston Scientific and implant it while I am asleep.I would love to hear from anyone who has used the Boston or had it done asleep. My surgery is planned for Sept.

Hi Lisa I would love to hear from the people you listed and anyone else regarding DBS. Hope to hear your stories.

Hi, @leftylucy - I, too, hope @bjmiller @hopeful33250 @jshdma @coolnacart1892 @maxaz1 @sainath @patch @steeldove @orval will return and share their or their loved one's DBS stories, when they have a moment.

Hello @leftylucy,

In our Connect discussion, the only person I know of who had DBS is Walt and you have read about his experience.

I would encourage you to look for a PD support group in your area in order to meet others who have also had DBS. While I've never had DBS myself I have talked with many people who had DBS through a local support group. Their experiences and results were unique and as different as the individuals.

Here is a link to the Parkinson's Foundation, https://www.parkinson.org/. There is a helpline listed and you may be able to call and get information regarding support groups in your area. You might also talk with your hospital (is it Mayo?) and see if they have others you could talk with. You can also google "Parkinson's Support Groups" and see what comes up.

You don't mention what state you live in, however, if you are in the Michigan area there is an organization called the Michigan Parksinson's Foundation with many support groups all over the state. There may be something similar in the state where you live.

Do you have a date in September for beginning the DBS procedure?