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10-02-2006, 09:01 AM | #21 | ||
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Chasmo:
Thanks for setting me straight on the dangling wires etc. We have had a number of people in our support group who have had the operation, none of them successful. Count your blessings All the best Lloyd |
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10-02-2006, 11:40 AM | #22 | |||
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what kind of difficulties are the having?
DR. Resai at Cleveland Clinic has a burgeoning practice of correcting otherh surgeons blotched efforts in addition to doing his own DBS's. It's not hard folks, a little pre-operative research will give you great benefit, post-operatively!!! here is a link that shows the good results a good team has...... http://www.neurology.org/cgi/content/abstract/58/3/396 In our site at DBS Surgeries, there is a list of 54 questions, compiled by nurse-practioner Beka Serdans. Anyone who is contemplating a DBS should as most if not all these questions. ALso there is a rating form to tell how your experience was with a given team. |
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10-02-2006, 01:47 PM | #23 | ||
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Howaya- Ya'ol Coot . You still evangelicizing DBS? . With a journal paper from 2002 fabulously claiming that DBS has replaced L-Dopa Therapy?
C'mon my friend, you've even admitted to me, yes me, over the phone; that DBS is not the "giant leap" that it is made out to be. We discussed this and you even told me that there were several "not-so-good's" in your own support group. My dementia against yours cs |
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10-02-2006, 02:00 PM | #24 | |||
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First, I consider you the "poster child" for DBS Surgery!!! It is NOT a cure and your PD keeps on progressing. My group has folks thatt have placement or programming problems. All the sucessful DBS'ers are out enjoying life!! The key to a successful DBS-STN is to get your carcass to the BEST team you can!! The horror stories I can tell you about bad surgeons!! Assuming a top team, the odds are over-whelmingly in your favor for a good result. Charlie |
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10-02-2006, 04:45 PM | #25 | |||
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I don't like the dentist looking in my mouth, never mind drilling! I'm not there yet, but I really don't believe the day will come that I will ever allow another human being (or robot) near my head with a drill no matter how small the hole or promising the outcome. Where I live, I only know of one case that I would consider successful and she went elsewhere to have it done, and chose her team carefully, all of which cost a few peso's. I think I will be like the old Indian, who, when it was time to leave the planet, went and found a nice sunny rock to lie down on and give up the ghost.
I'm with CS on this one. I'm betting something else will get me first anyway. DBS is like the little girl with the curl: when it's good, it's very very good, but when it's bad....it's awful. But the funny thing is, GDNF also has an invasive delivery system, but based on its history so far, I'd consider that. Now why is that? Must be the marketing company |
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10-02-2006, 05:03 PM | #26 | ||
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Most of the pertinent points have been brought up but I'd like to offer a few comments about my decision and results.
I was diagnosed with pd at age 39, 21 years ago. I was taking a handful of meds every 2-2.5 hours ind the amount of "on" time was shortening every day. I traveled from Alaska to Seattle to have the surgery. I had the brain portion done on Tuesday and spent Wednesday shopping and riding the monorail in downtown Seattle. The contoller was inserted in day surgery on Thursday at apptoximately 8:00am. I was dismissed at noon after I having my initial programming done. We boarded a plane and flew back to Alaska Friday afternoon. I went back to work on Monday with no complications whatsoever. The most painful part of the entire process was having the stitches removed two weeks later. The MRI's wheren't a picnic either, but the discomfort wasn't painful!! The surgery was a Godsend for me. Meds have been reduced from about 35 pillw (5 pills 7 times) per day to 6 (2 pills 3 times). I can walk down a flight of stairs like a normal person. My productivity on my job has increased to essentially that of any other healthy employee. There have been drawbacks too. Both my speech and balance is worse, but may have progressed to this point even without the DBS. I've seen others, mostly much older than my age at the time of surgery, that have not done so well. Just as pd is an individual disease for each person if attacks, so also must be your decision on DBS. I haven't regretted it for even one minute and know more that who feel the same way than those who have regretted having the procedure. Hope this is informative to those who are contemplating having DBS. |
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10-02-2006, 05:12 PM | #27 | |||
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Thanks Dale, that sounds really encouraging. 21 years with PD and still working! WOW!
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10-02-2006, 05:28 PM | #28 | ||
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In Remembrance
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Quote:
paula [switch off] |
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10-02-2006, 05:29 PM | #29 | ||
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In Remembrance
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good grief this reminds me of sitting in church and having your stomach growl loudly.......sorry...paula
Last edited by paula_w; 10-02-2006 at 05:37 PM. |
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10-02-2006, 05:35 PM | #30 | ||
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In Remembrance
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this is an extra post now is it long enough to submit? sorry, paula
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