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Posted by Carole on October 27, 2000 at 18:56:24:

In Reply to: Re: Side Effects of DBS posted by Bruce on October 27, 2000 at 11:00:49:

: : This is my first time at this sight and it is so refreshing to see such a great source of information, advice and personal accounts about PD. My father is now 64 years old and was diagnosed with PD at age 35. 5 years ago he had a pallidotomy for his extreme dikinesia which was tremendously successful. He went from being basically homebound for years to being able to go out shopping and even for short walks on his own.
: : We were so impressed with the success of that surgery that when the opertunity for DBS came about my father lept at the chance to regain even more freedom. Unfortunatly this procedure was not so successful not only has his condition deteriorated to the point of needing baically constant care he is experiencing dementia and memory loss as well. He is depressed and rarely even speaks. He is now in adult day care 5 days a week because he can't be left alone when my mother and I are wotking. My questions to anyone who may know are: are these typical side effects of DBS and are there any meds or other means of therapy that can help these problems? My comment is that I wish at the time of surgery we could have known if the procedure was not a succes just how life changing and dibilitaing the effects could be. If anyone has input or is experiencing a similiar experience please reply.
: : Thank you, Emily

: Emily, I havn't had the DBS surgery yet, but am getting closer to having the surgery. Go to www.parkinsons.org and click on "ask Dr. Lieberman". Sign up for his Q and A and he will answer your question within 24 hrs. He is the director of the NPF and he will give very good and accurate advise. He is a Parkinson's specialist and I am very impressed with his answers. His answer will appear in your e-mail mail box. Good luck. Bruce
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Emily-
A few clarifications will help when you ask for help. What type of DBS (deep brain surgery) did your father have? How long has it been since his second surgery? Did they do both sides of the brain? Does he have IPGs (Implanted Pulse Generators)? Is he taking any meds now at all? How long has it been since he's had follow-up care from his neurologist? These are all questions I'm sure Dr. Lieberman would ask, too.
I have had the bilateral STN - DBS (placement of electrodes in the sub thalamic nucleus) in May '99 and have had excellent results! I have my life back. I also take 3 Sinemet CRs (50/200) and Comtan 3-4 times a day. Half of what I was taking. Most people tell me they can't tell that I have PD! They wouldn't have said that before. I also have met several people who have had numerous DBS procedures; they keep coming back for the latest. They seem to be doing well; they haven't voiced regrets.
What we have to realize is that surgery isn't a cure; we still have PD, and it still is a progressive, degenerative disease. Until our brains can produce dopamine again, (the "cure"), we all have to face the truth that time IS marching on. Surgery is the biggest bandaid of all.
I am so glad to I had it done (I'm 47 and have had PD since age 31). My medications were failing to work and more meds just gave me totally disabling dyskinisea. I still have to go in for programming adjustments every couple of months; I had one side replaced when it shorted out and now the other side is shorting out. (outpatient; thru the chest) It's during these times that I realize how bad I could be without the STNs because the PD is still here and has progressed. I hate to have 'the little babies' turned off for adjustments. The shorts have meant (for me) that I am not receiving the 100% benefit I should get; my biggest sign that all is not right presently is that I am just s-l-o-w-iii-nnnn-gggggg down.
Keep communicating with his doctor; perhaps he should get another opinion?? Be a squeaky wheel!!
I wish you the best. Your father deserves the best, too!!
Carole
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