WOULD LIKE TO HAVE INFORMATION FROM THOSE WHO HAVE HAD DBS

[susieque]

I am considering DBS and would like to hear from those who have experienced it themselves or with a spouse. I have a great fear of it for myself and my husband. I was dx 17 years ago, slow moving until recently. No tremors mostly bradykinisia. When I'm on dyskinisia. Is DBS hype? Does it improve life enough to warrent going through it? Would like to hear your thoughts!!!

[Brooke]

I had DBS on May 14th and 21. Your PD sounds like mine. I do not have tremors I just get very stiff. I was not afraid because after living with this terrible condiion it gave me something positive to look forward to. I have a wonderful Movement specialist also a very experienced surgeon. There is no pain with the surgery just a little discomfort with the incisions. I am feeling much better than before although I have been told it takes a while to adjust it right. I am not sorry I had it . I am better than before and I am looking forward to even better days.

[susieque in reply to Brooke]

Thank you for your response. I think I just need a little push and I am tired of on off on off.

[jonroberts]

I had DBS surgery May and June of 2012. I also had rigidity rather than tremors. I was taking 1.5 pills of Sinemet every 3 hrs and it only gave me 45 min of on time. I experienced 3-4 hrs of off time per medication. No way to life. Yesterday I received a phone call from a DBS candidate. His question was would I do the DBS if I could do it again and I said "in a heartbeat". Put your trust in God that He will guide your surgical team to a successful operation". My theme song was Break on Through to the Other Side!"

[susieque in reply to jonroberts]

It is good to have such a positive attitude!

[dottie]

I have had two DBS surgeries, with mixed results. The first was the newest STN, but I have a lot of dystonia, so we did it again, in the globus pallidus. It's taken awhile but I can see small improvements. I get a plane ride every year, and my programmer adjusts the settings.

Four things have helped me

1. GET A GOOD PROGRAMMER! I can't stress this enough. My programmer is the best in the country and has access to neurological experts.

2. Be patient, yet persistent. Your results will be better if you keep the stress down. Find the humor; something that makes you laugh. Listen to music: I'm a U2 girl but Pearl Jam is a very close 2nd.

3. "Expect Miracles" Medtronics is making big strides in the technology.

4. This from a published PD patient: "Accommodate the disease but never give in to it"

I am one of 50 people on the planet with this setup. Get in touch with me through regular email. This is too public.

I have other guidelines I can share.

[srarndt]

DBS was life altering for me! No hype! I count it as a MAJOR blessing! Incredible improvement in my quality of life! Helped me both directly and indirectly to resolve PD symptoms. Cannot guarantee this outcome for any one else, but i have only 2 post DBS complaints:

1. ) First 6 months felt periodic "phantom" itching on site where cable traverses side of head...

2.) That i did not have it done early enough to be able to continue with my job, which i loved...

[oldskool49]

I have had this constant companion for about 11 years. And it is getting more control of my life. Tremors yes, walking and balance problems, yes. Involuntary head movement, yes. Lack of sleep, take 3 to 4 hour naps, not healthy but it is what it is. Left knee locks up daily from 30min to 1 hour plus. And at times the right will join in. Now muscle spasms in legs, charley horse more on left side. I am right handed. At KU Med about a year ago the doc at that time suggested DBS. But the last visit nothing said. My meds are 2 25-100MG carbid and 1 2MG requp about 2 to 3 hours apart. Sometimes more like 1 to 1.5hrs apart. So should I push for DBS. But the following health battles are also a part of my life. First 2 vertebra in my neck are degenerating with 3 bulging disks. Had the right knee replaced in 09 and the left is starting to show signs that it wants to be replaced. So will DBS set life on a better course ??? Maybe 1 day I will find out. But till then I will continue to follow the postings.

[jonroberts in reply to oldskool49]

I would continue to see if you are a candidate for DBS surgery. Your other health issues are part of the qualifying criteria. Be persistent and Good luck.

[jonroberts in reply to oldskool49]

I would continue to see if you are a candidate for DBS surgery. Your other health issues are part of the qualifying criteria. Be persistent and Good luck.

[susieque in reply to jonroberts]

good point!

[marmaduke123]

i cant expand on any of the questions the website just jumps onto another page. sorry i cant be of any help. bring back the old website please..............!!

[salon]

I am going to u k in lexington ky to morrow for first appt for dbs am terrified but hopeful to be better soon asking for prayer from my friends on here thank you and God BLESS

[susieque in reply to salon]

Good luck!!

[Lynne1946]

I am scheduled to have DBS May 23rd. I just have tremors,but they are really bad. I take 250/25 carba dopa/leva dopa every 3 hours round the clock. I also take primapaxole 4 times a day and still have very active tremors. I am scared, but I don't want to live the rest of my life on lots of meds and lots of tremors. My brother in law had DBS a few months ago and he could not be happier. I think if you have a good neurologist and neuro-surgeon you don't have any worries. You need to do it before you don't qualify-which sometimes happens if we wait too long. Good Luck!!!

[Sleeplessparki in reply to Lynne1946]

Hi Lynne1946, best wishes on up coming procedure. I’m scheduled for 6/12. Which DBS device are getting?