Considering DBS. If you have had it, your input is greatly appreciated

[wordworks2001]

My neurologist broached the subject of DBS surgery for the first time last visit. My wearing off periods are getting longer and I do get some pretty bad tremors during those times. I have a few friends who have had the surgery. One has had problems with infection and they have replaced his wires a couple of times. One had difficulty adjusting his device. I only know of one person who said they were completely satisfied with their outcomes.

If you have had DBS, I would appreciate hearing about your experience. Were you happy with your outcome? Did you have any problems with infections? Were you able to eliminate or decrease dosages of medications? What was surgical recovery like?

Thanks for any information you can provide.

[compucure]

Hi I had DBS in June 2012. No complications at all. I would say that it takes some time to program the stimulator but I have been able to reduce my meds by 60% and I do not suffer from dyskinesia post operation. I would definitely recommend DBS - it has changed my life. Incidentally I have had PD for 18 years now. If you would like any further help with this, my email is [e-mail]

[wordworks2001 in reply to compucure]

Tony, thanks for the reply. We have corresponded before. I am so glad to hear something positive about DBS. Lately, all I've read about from others are complications. One guy in particular had a staph infection of the brain that was quite serious.

I had open heart surgery in June, a four vessel coronary-artery-bypass-graft. I am hoping that since that surgery and the recovery were so successful, my cardiologist will agree for me to have DBS. I think she will since general anesthesia is not involved.

Thanks again Tony. My email is [e-mail]. It will be great hearing from you, especially if your DBS continues to be a positive thing.

[compucure]

Let's keep in touch. Tony

[Jash]

Had real time MRI DBS in June...I'm still in the programming adjustment stage, but so far, I can do things now that we're impossible for me during the last year-- like lace a new pair of running shoes that I'm so happy to break in. There are ups and downs, for sure, but I'm happy that I can button my shirt and zip my jacket and eat in public. My DBS was general anesthesia; I had no complications. I'm on one 4mg Neuropatch per day now.

[wordworks2001 in reply to Jash]

Thanks for the encouraging input, Jash.

[etterus in reply to Jash]

where was the surgery performed... plus did you have the subthalamic nucleus or globus pallidas placement?

[Jash in reply to etterus]

University of Pittsburgh Medical Center in Pittsburgh, PA. Dr. Mark Richardson is my surgeon. He chose the STN. Good luck...It took me a long time to decide, but when the general anesthesia option became available, it made my decision much easer and I was to the point that I had to do something.

[BMichalos in reply to Jash]

What difference does the STN or GP make?

[Jash in reply to BMichalos]

Not sure I can answer this one very authoritatively. It depends, I believe, on the kind of symptoms you have and what the neuro and surgeon believe to be the site that will best control the most symptoms. I was told that the STN placement offers the best opportunity to control the most symptoms and that the "overwhelming majority" of patients have STN placement.

[BMichalos in reply to Jash]

thanks for your reply

[grammieof3]

Oh my gosh yes do it. One of my batteries turned off the other had forgotten how bad i was. Just turned it back on instant relief. You want be sorry. Do it.

[wordworks2001 in reply to grammieof3]

Thanks for the reply.

[debbie66]

My husband had DBS in 2004,he suffered with 24/7.After the op his dyskinesias were gone,his meds were dropped by about 60% and since having it done he has had 2 battery changes.He was lucky it only took a couple of visits to get the stimulator working to help him properly.The downside for my husband was his speech and balance but there are some fantastic speech therapists and physios who help people with Parkinsons.

[annh]

Most DBS surgeries will improve a persons quality of life, at least that is the expectation. There are however certain questions that will provide information which helps with the decision making process. How many DBS are performed by the neurosurgeon and his team in a year, and also how many in total have been performed. These statistics are available as are the ratio of success versus non-success figures. Some hospitals have a better rate of success with DBS than others, something to think about. Also, there are ground-breaking innovations about to occur within DBS in the very near future, so maybe it might be worth considering a delay until the new year.

[BMichalos in reply to annh]

What are the ground-breaking innovations and what stage is the best to have DBS?

[srarndt]

Hi,

I had my DBS surgeries about 2 years ago. LOVE the results. Call up Medtronix and ask them for a contact with a "Ambassador" who will call you via telephone to discuss the questions and concerns. Free service, toll free calls, too! BIG Help!

Steve, Bisbee, AZ

85603

[wordworks2001 in reply to srarndt]

Thanks Steve!

[Lynne1946]

I had a severe tremor and was taking 16 carba dopa/leva dopa per day. I am taking 4 per day now and no tremors at all. It was the best choice for me. No complications or infection. There is a cut off point when cognitive problems get in the way and they won't do DBS,so don't wait too long.