My neurologist has recommended for DBS . As per the data ,I am informed that the success rate is 90%.Here also the neurologists are divided in two. Few says that medicine will continue even after DBS while other say no.
I would request those who have been operated for DBS to share their actual experience after the surgery
I had DBS surgery in 2008. It made a remarkable difference in my life. I was on no medication until 2 1/2 years ago. From what I was told, not needing any medication afterwards was unusual. Like any other PD therapy, results vary from individual to individual and it can take a bit of trial and error to find the ideal stimulation settings. My one suggestion would be to find a surgeon with a proven track record of success. The leads in the brain require very precise placement and you don't want to be the first or second patient the surgeon is treating. If I can help in any way, please don't hesitate to reach out.
Thank you very much. I don't know the country you are in . I live in India.
Pauldmd, Do you know your H&R stage or were your symptoms pretty bad? My Neuro has also asked me to consider DBS but I have always seen it as a late stage thing. I am currently a H&R 2 to 2.5. My neurology team want me to increase my Sinemet and agonist doses but it gives me debilitating anxiety and agitation...
I differ from Paul in that my team claim that they know of hardly anyone who has managed to give up their drugs. I had dbs a year ago here in the U.K. it’s made a huge difference to my dystonia and bradykinesia but has messed up my voice quite badly too?
Jeeves,
I thought you were feeling pretty bad when you had your DBS. Do you wish you had done it earlier?
Thanks
C
Hi Jeeves
I am considering DBS v apomorphine pump. I’m wondering what’s involved in the assessment process for DBS and how long it takes in NHS. I’m based in London, UK.
Depends on waiting lists as you’ll no doubt be aware of in our bashed about NHS. Your main hurdle (not a hurdle if you have proper PD), is the Levadopa Test. They assess your response to Levadopa basically. If you respond well you’re a candidate. Then you get a few tests for cognition and dementia. From this point, the process is pretty quick but waiting for this stage can take an absolute age. Good luck.
Thank you Jeeves.
That’s very helpful to have an idea of the process. . I will do some research especially around voice.
Well spotted. It CAN mess your voice up but it depends on how bad your symptoms are. There’s a trade off but I’d still be prepared to have it done if it managed to control my awful dystonia which was getting out of hand and ruining my life in another way?
DBS little over year ago. still on Rytary 195s x 3 per day. some improvement in walking but only back to where I was before the surgery.
Did it help u with freezing? Walking , is it pretty normal for u now?
was on 245s...docs went to 195s 3 pills 3 x per day...also take amantadine
how many year of PD ? I have noted that DBS is n normally considered around 7 to 10 years after diagnosis
The hope of DBS is to at least reduce the amount of medications a PWD have to take. True some people after DBS have found the "sweet spot" where no medication is needed. However, eventually medications need to be added back in. DBS is a tool for a person to live a better more fulfilled life by not relying on as much medication. It's not a cure for PD but instead of progressing with the disease, by being able to reduce the meds (which will eventually NOT help the symptoms without DBS), and live a longer life, prayerfully NOT tied to medications being needed 24/7
My husband just had DBS and is in the process of having it "turned on" in a month. But to have hope for symptom reductions is worth it
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