Deep Brain Stimulation

I have parkinsons and have had the dbs surgery.  I would be glad to answer any questions or give you a brief general description of the process.  Due to some issues that I won't go into here, I will have to keep communications to here in the forum, but feel free to ask any question and I don't mind answering.

Hello Cherryl, this seems to be an excellent site that I just happend on yesterday.  I have had DBS for Parkinsons twice - that's right, 2 separate times each time by a different physician - the 1st time was in 2002,  the 2nd time in 2005.  The 1st guy obviously didn't do a good job, my 2nd time the results have been wonderful.  In fact if you would care to discuss this with me further I'd be happy to tell you any thing at all. 

I am new to this specific type of using the internet (Posting, etc.) and don't know the protocal regardng sharing email addresses.  Send me yours via this site and I'll reply ASAP.

Sincerely,

wcdgrmi

Hi, I was considerng DBS for my Parkinsons but found that it isn't appropriate for everybody - it depends on which symptoms you want controlled. Anecdotally, I note that people who have DBS eperience dificulties with speech. These dificulties can be overcome by retuning the pacemaker to be less effective aginst the symptoms treated and in the long term they respond to speech therapy. I am not sure how acurate these observations may be for tourettes. I guess the best thing to do is ask your neurologist for some advice about side effects of the operation. Peope who have had DBS also reduce their medications significantly.

How long after diagnosis has anyone had the surgery?

Post Edited (Mr. Roberts) : 7/5/2010 7:18:31 PM (GMT-6)

My dear friend had DBS surgery twice. The first time the leads were poorly placed and the results were less than stellar. The second time she had a slight bleed during the surgery and ended up having a stroke with post stroke complications. They were fairly dramatic post stroke complications. Research your nuerosurgeon to the nth degree. Don't go into this type of surgery lightly. Research research research!!!!

My husband had DBS 12 months ago. He didn't have tremor just stiffness and pain, slow movement and his speech was also being affected. The surgery initially was fantastic. He didn't take any meds and his walking was perfect. But two things have happened since then - not only is his mobility not as good as it was, but there was a big change in his personality and temperament. The latter started to happen within 3 weeks of the op. He went from a tolerant, easy-going fun-loving man (even when he was diagnosed) to become quite the opposite. He also started overshopping (always at the auctions buying stuff we don't need) , starting lots of jobs around the house and never finishing them, losing his keys and forgetting things frequently. He was clearly a bit manic. But even worse than that is his lack of emotions - where once we had a very happy marriage, were best of friends, now he tells me he feels 'nothing'. But he says he can't help it. It has been a terrible shock and very hard to deal with. He has no interest in affection or intimacy. The neuro keeps tweaking his device to help his mobility but it hasn't made much difference to those traits that made my husband the great guy he was. It is like living with a flatmate who couldn't care less about me. The neuro is a leader in his field, very experienced and he told me it can take 18 months for people to recover from DBS and my husband was an "unusual" case. But I'm not sure they really know. In desperation I saw another neuro (who didn't see my husband) but who told me that my husband appears to be suffering from 'Parkinsonian Personality' when I described the symptoms I relate above . My husband does seem to be less quick thinking too. Nor does he explain himself very clearly. Then out of the blue, there is the odd day every month or so, where is perfectly 'normal' - just as he was before he was diagnosed even. Quck witted, fun, intellectually sharp and so like his old self. The second neuro also told me that if they are still tweaking his device so long after the op, then they will never get any improvement now. It is all so confusing and I am really upset. Has anyone else been through anything like this after DBS? If so, did the patient eventually return to his normal personality and temperament? I would love to hear from people who might have even had just a few of the symptoms I am describing here. I thank you in advance.