Melanie - I know how terrifying this whole process can be, both for the patient and also for the family. Please know that others have been through this and there is such hope now with the treatments available. DH's neurosurgeon gave us web sites to visit and a couple of weeks to really think the whole process of surgery over.
Helen in SW FL
Subject
DBS surgery
Date
24 September 2003
Posted by
Melanie
hi, my husband is 47 years old and was diagnosed with Parkinsons 4 years ago. They started him on requip and that did nothing, then a second medicine that slips my mind and also nothing. Nearly 16 months after he was diagnosed the went to Sinemet. This did wonders. Michael is on 1200 mg a day and it has quit working. He is going to talk to his doctor tomorrow about surgery. I guess there is no specific question, just a response from someone, because I am terrified. Excuse the spelling of the medications!! Thank you.
Subject
Re: dbs surgery
Date
07 August 2003
Posted by
Helen
Forgot to tell Ed that DH (dear husband) has the rigidity type of PD.
Subject
Re: dbs surgery
Date
07 August 2003
Posted by
Helen
My husband had the last of his DBS surgery yesterday and gets "turned on" next Wednesday. He had the left side done, in two parts, Jan and Feb this year, a week apart. This doctor prefers to do one side at a time; doing the implantation and then a week or so later, he installs the wires and the neurostimulator. This process was repeated on the right side, two weeks ago and yesterday.
The results have been amazing and my husband said it has given him his life back. He was almost to the point of being bedridden in December and had maybe a total of 3 hours "on time" in a 24 hour period. And that wasn't three hours all at the same time.
He was dx. 16 years ago when he was 41, just turned 57 this past February. He was taking 10 Sinemet, 8 Parlodel, and 2 Selegiline daily. His meds have been reduced slightly but hopefully they will decrease more with both sides done now and being turned on. He is on a very low setting right now.
I hope this helps, but as Margaret said, make sure you do your homework and have all the facts available. The Sinemet worked for my husband, more so in the beginning years, and he suffered no depression with the PD.
A local station in our area did a segment recently on PD and DBS and guess who the star was? LOL. Yes, my husband. They mainly use the tapes as a teaching tool at their hospital but also to educate the public.
Helen in SW FL
Subject
Re: dbs surgery
Date
05 August 2003
Posted by
Bruce Dunwiddie
I had DBS on March 7th 2003 with wonderful results. It gave me my life back after 18 years of PD. I strongly encourage DBS surgery after you have done your homework and selected a hospital and team you have confidence in. I am a totally different person since surgery and have no regrets whatsoever. If it provide any relief you will be pleased with the new you. If I can help in any way feel free to contact me.
Subject
DBS Surgery
Date
31 July 2003
Posted by
Ed Lohan
I'm new to this forum so I hope I have reached a place that can provide some objective answers.
I've had PD for 5 years. I am 55 soon to be 56 and I'm comsdering the DBS Surgery. I'm meeting with the surgeon next week. I've talked to a half dozen people who have had the surgery. All with good results. I have the rigidity type of PD. Quite frankly, I'm tired of all the medications. 8 Sinemet fast acting, 6 sinemet timed release and 6 4mg.tabs of Requip. I realize this isn't much yet but the dosages keep going up. And finally, I want my life back.
If anyone has a comment that they would like to share, I would rally appreciate it. I keep thinking I'm not asking the right questions.
Thanks in advance. Ed Lohan
Subject
Re: dbs surgery
Date
11 February 2002
Posted by
judi kalinski
Margaret, Thank you so much for your insight. Where may I find "Ed Grossman's personal story"? Also, have you had any cognative decline since your operation? I almost think that Dad may be willing to pay the price of some decline to reep the benefits of the surgery. He's confused now; would it be so bad to be a little more confused but be able to be able to move freely and be off of so much meds that causing some of his other problems? I just don't know!!! Judi Kalinski
Subject
Re: dbs surgery
Date
09 February 2002
Posted by
margaret
I believe that the question of cognitive soundness is perhaps more important than a physical condition because there is no way to project how the patient will respond during and after surgery. I urge you to take this caution seriously and ask a lot of questions from the psych administering the tests to your father. The general roadsign is to be vary of brain stem shrinking (if present, shown on MRI) or negative and low scores on the tests used during the many hours of grueling questions involving memory, reasoning, etc tests - speaking as a patient.
Your father is fortunate in having you as an advocate to find out what the best course of action is. Please read the personal stories of Ed Grossman and his wife to get a first hand account of unforeseen problems. Since there has been a negative correlation between DBS complications and pre-existing cognition problems, I suggest caution - discussing it in detail with your neurosurgical team members is the proper way to approach this question.
Good luck, Margaret
Subject
dbs surgery
Date
08 February 2002
Posted by
judi kalinski
My father is 70 yrs old and has had PD for 14 years. He is scheduled to take a psychological test in March 2002 to see if he is 'cognatively ok' to continue toying with the idea of the syrgery. He has a feeding tube and suffers from hyper and hypotension. His cognative condition has declined over the past few years. Is this isue a really big concern? How much have you changed cognatively since the procedure. Thank you for your time. Judi Kalinski
