Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 Dear Deborah, Bill and MSA/Shy Drager friends, I am soooooo far behind on my email reading that it has become overwhelming. Was able to read your postings today and will try to respond as best I can. Please do not worry about hurting my feelings or " bursting " my exuberance bubble...we are like family here and always need to be honest, empathetic and yes, even blunt at times to get a point across if need be. We are taking the DBS VERY seriously....in fact we have been researching it since 1997. has been diagnosed by no less than 7 neurologists now as having common Parkinson's Disease, 3 of which are movement disorder specialists, one specializing in brain dysfunction/tumor, one a neurosurgeon specializing in DBS. These are physician's that for the most part are independent of one another as well. Bill, this particular DBS surgery was considered experimental until March of 2002 when it was given full approval. It is called DBS of the Sub-Thalmus, with the electro- magnetic probe(s) going deeper than the typical DBS of the Thalmus or Pallid. The last two mentioned helped tremor only, while the DBS-ST has had much success in lessening tremor, rigidity, dyskinesia and freezing. Our neurosurgeon is Dr. Frederick Junn and he is affiliated with Henry Ford Hospital in Detroit and Beaumont Hospital of Royal Oak. He has completed over 50 of these procedures and is considered a forerunner in Michigan. He has successfully done more DBS-ST procedures than all other Michigan neurosurgeons combined. This has been reported to us by not only himself and his staff but by other neurologists not affiliated with Dr. Junn in any way. Of course we are aware of the inherant risks and are prayerfully considering every step of the process before we proceed. Henry Ford has a new state of the art MRI (described as 3-D, but I don't know it's technical name right at the moment...it is in paperwork at home) which greatly assists in the " mapping process " and its preciseness. As far as the mental ability or psychological strength to withstand something going wrong...I guess it is fair to say that no one knows how they would be in any given situation until they have had to face it. Deborah, I wouldn't even begin to state that or I could muster the strength, grace and of course " tenacity " that you have so courageously displayed over this long period. You are an inspiration to all of us, even though we may not have all expressed it as such, and yes, I do know your story and have followed it with rapt attention, awe and much prayer! We will certainly research and ask many questions, all that you have listed and more. If any of you think of anything additionally, please " shoot " them off to us asap! The concern and care from the members of this group are touching and inspirational. We learn much more from each other than we do from the medical profession... I will do my best to journal what is happening as it happens and give as much information as I can. It will be long stretches before I am able to get back to a computer however. Thank you all for caring and keeping us in your prayers and thoughts. You are all a tremendous blessing and source of strength! Respectfully, Maggie and 64/53/51? Central Michigan 48858 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 Dear Deborah, Bill and MSA/Shy Drager friends, I am soooooo far behind on my email reading that it has become overwhelming. Was able to read your postings today and will try to respond as best I can. Please do not worry about hurting my feelings or " bursting " my exuberance bubble...we are like family here and always need to be honest, empathetic and yes, even blunt at times to get a point across if need be. We are taking the DBS VERY seriously....in fact we have been researching it since 1997. has been diagnosed by no less than 7 neurologists now as having common Parkinson's Disease, 3 of which are movement disorder specialists, one specializing in brain dysfunction/tumor, one a neurosurgeon specializing in DBS. These are physician's that for the most part are independent of one another as well. Bill, this particular DBS surgery was considered experimental until March of 2002 when it was given full approval. It is called DBS of the Sub-Thalmus, with the electro- magnetic probe(s) going deeper than the typical DBS of the Thalmus or Pallid. The last two mentioned helped tremor only, while the DBS-ST has had much success in lessening tremor, rigidity, dyskinesia and freezing. Our neurosurgeon is Dr. Frederick Junn and he is affiliated with Henry Ford Hospital in Detroit and Beaumont Hospital of Royal Oak. He has completed over 50 of these procedures and is considered a forerunner in Michigan. He has successfully done more DBS-ST procedures than all other Michigan neurosurgeons combined. This has been reported to us by not only himself and his staff but by other neurologists not affiliated with Dr. Junn in any way. Of course we are aware of the inherant risks and are prayerfully considering every step of the process before we proceed. Henry Ford has a new state of the art MRI (described as 3-D, but I don't know it's technical name right at the moment...it is in paperwork at home) which greatly assists in the " mapping process " and its preciseness. As far as the mental ability or psychological strength to withstand something going wrong...I guess it is fair to say that no one knows how they would be in any given situation until they have had to face it. Deborah, I wouldn't even begin to state that or I could muster the strength, grace and of course " tenacity " that you have so courageously displayed over this long period. You are an inspiration to all of us, even though we may not have all expressed it as such, and yes, I do know your story and have followed it with rapt attention, awe and much prayer! We will certainly research and ask many questions, all that you have listed and more. If any of you think of anything additionally, please " shoot " them off to us asap! The concern and care from the members of this group are touching and inspirational. We learn much more from each other than we do from the medical profession... I will do my best to journal what is happening as it happens and give as much information as I can. It will be long stretches before I am able to get back to a computer however. Thank you all for caring and keeping us in your prayers and thoughts. You are all a tremendous blessing and source of strength! Respectfully, Maggie and 64/53/51? Central Michigan 48858 Quote Link to comment Share on other sites More sharing options...
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