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Deep Brain Stimulation

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Parkinson's Disease
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Cherryj
New Member
Joined : May 2010
Posts : 2
Posted 5/23/2010 8:18 PM (GMT -8)
I would like to email with anyone who has had the DBS operation, and is willing to discuss it.  I am well aware its a very sensitive issue and I completely understand if you have had the operation but prefer to keep it private.  However, if someone is available, I would really appreciate talking to you (however I live in Australia, so emailing would be easier at this stage, I would send you my personal email address). 

My sister has Tourettes Syndrome and is considering having the surgery and would really appreciate the opportunity to talk to someone who has had the operation.  I realise PD and TS are different conditions however since they have similar uncontrolled movement symptons, and DBS is undertaken for both conditions, and I can't find anyone online who has had the operation for TS, this is another long shot at trying to find someone.

Any information would be of great benefit.

Cherry

 

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gtmriviera
Regular Member
Joined : May 2007
Posts : 338
Posted 5/25/2010 8:32 AM (GMT -8)
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.
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Cherryj
New Member
Joined : May 2010
Posts : 2
Posted 5/26/2010 9:37 PM (GMT -8)
Hello, thank you so much for getting back to me.  My sister has now been confirmed that she will be having the operation.  Her Tourettes is exceptionally anxiety inducing and she was very anxious to know more about it - she was getting ahead of herself worrying equally that she would have the operation and worrying about what is involved!  However she has now spoken with the two neurologists so she has more of an idea of what is involved, and she is meeting with her neurosurgeon in the next few weeks so she will have alot more information on it, so she said she no longer has the need to talk to someone about it.  In a way I'm guessing it might be better that she doesn't anyway, I think its enough to think about on its own and I imagine everyone's experience is different, so I think she should just listen to the dr's and not worry about what anyone else says, unless she has a specific question.

She is the first person in Perth to have this particular operation, they have done it for PD but not for Tourettes but its not too different, just targeting a different part of the brain, so we're all rather nervous and crossing our fingers it works for her.

Thank you again for getting in touch with me, its really appreciated.

I hope it is all working out well for you.
Cherry

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wcdgrmi
New Member
Joined : Jan 2009
Posts : 3
Posted 6/11/2010 6:56 AM (GMT -8)

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

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yekkimo
Veteran Member
Joined : Apr 2003
Posts : 1283
Posted 6/11/2010 9:39 AM (GMT -8)
wcdgrmi,Welcome to HealingWell.Although sharing e mail addresses is not generally recommended;it is not against forum rules,and is left to the discretion of members.Wish you the best,and glad to hear that your DBS was sucessfull.Ed
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tucker bag
New Member
Joined : Jun 2010
Posts : 17
Posted 6/11/2010 10:00 PM (GMT -8)
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.
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NAV70Y 64
New Member
Joined : May 2010
Posts : 1
Posted 6/15/2010 2:30 PM (GMT -8)
NOT ALL PEOPLE ARE GOOD CANDIDATES FOR DBS: CONSIDERING THAT IT GENERALLY FOCUSES ON TREMORS AND NOT THE OTHER SYMPTOMS IT IS NOT A CURE ALL. IN SEPTEMBER OF 2008 I HAD THE SURGURY AND IT HAS ELIMATED THE TREMORS BUT I HAVE NOTICED AN ANTICIPATED SLURRING OF SPEECH (MOST PEOPLE TELL ME THEY CANNOT TELL). MY SURGEON AND I HAVE EXPERIMENTED WITH CHANGING THE SETTINGS BUT TO IMPROVE THE SPEECH THE TREMORS RETURNED TO AN UNACCEPTABLE LEVEL. THEREFOR I HAVE LEARNED TO LIVE WITH THE SPEECH THROUGH THERAPY. OVERALL WITHOUT QUESTION I THINK AND THANK GOD THAT THE SURGURY WAS AVAILABLE. DO IT
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Mrs. Doyle
New Member
Joined : Jul 2010
Posts : 3
Posted 7/5/2010 5:04 PM (GMT -8)
How long after diagnosis has anyone had the surgery?

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

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fordman64
New Member
Joined : Jul 2010
Posts : 8
Posted 7/8/2010 6:01 PM (GMT -8)
hi there everyone i have been diagnosed with PD too and im looking for people with expirience with DBS. Thank you too all who reply,
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Stella Marie
Veteran Member
Joined : May 2005
Posts : 601
Posted 7/17/2010 12:51 AM (GMT -8)
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!!!!
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fordman64
New Member
Joined : Jul 2010
Posts : 8
Posted 7/17/2010 12:10 PM (GMT -8)
i sure will ty for the info it was very helpful.
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Carole13
New Member
Joined : Dec 2011
Posts : 1
Posted 12/29/2011 12:53 AM (GMT -8)
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.
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