Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Just my 2 cents If compression can interrupt CSF flow, why wouldn't it be just as possible for it to interrupt blood flow as well. Between your brain and spinal cord, your whole entire body is under control (or not under control, as some of us well know). Makes only sense that , depending on the severity of the compression, that all these things could be related to chiari. We all also know that even after decompression, some things have been permanently damaged. Where decomp. may repair or improve some things, others will surface, or remain damaged. Rainbows to all, Grammy At 11:38 AM 3/1/2001 -0500, Kathleen Grigg wrote: > > Any other opinions on this out there? Chip, Kathleen, is this a > > discussion we should have somewhere else other than the egroups > > message board? > >No, keep the subject going on WACMA. There are so many similarities >between >neurological disorders. Having chiari can be the tip of the iceberg for >some. > >After talking with several members, Dr. Rosner does a Xenon test. I am >not >quite sure what it entails. (correct me if I am wrong with the >spelling) >Everyone that I have talked with that has had the test has low blood >flow to >the brain. > >I find it interesting, and think it should be a part of chiari testing, >pre >and post op. If we have low blood flow to the brain, that could explain >lots >of the auto immune problems that so many of us have. > >Any other thoughts out there???? > >Kathleen > > > > >Help section: /help/ > >NOTE: NCC refers to posts with No Chiari Content > >Unsubscribe Yourself: chiari-unsubscribeegroups > >WACMA Home: www.pressenter.com/~wacma > >WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Hi Kathleen, From what my understanding of Neurally Mediated Hypotension is, it also has something to do with lack of blood flow to the brain. My daughter has NMH and Chiari/sm, the NMH being diagnosed first. I am also convinced that Chiari causes alot more problems than the doctors tell us it does. I've stopped waiting for help from the medical community and am researching all the different diseases/conditions my daughter has ever been diagnosed with (CFS, NMH, ACM1/SM, and possibly FMF) and am having more success than I've ever gotten from a doctor. Eventually they will catch up with us (LOL). on 03/01/2001 11:38 AM To: WACMA <chiari > cc: Subject: Re: lupus/some CC > Any other opinions on this out there? Chip, Kathleen, is this a > discussion we should have somewhere else other than the egroups > message board? No, keep the subject going on WACMA. There are so many similarities between neurological disorders. Having chiari can be the tip of the iceberg for some. After talking with several members, Dr. Rosner does a Xenon test. I am not quite sure what it entails. (correct me if I am wrong with the spelling) Everyone that I have talked with that has had the test has low blood flow to the brain. I find it interesting, and think it should be a part of chiari testing, pre and post op. If we have low blood flow to the brain, that could explain lots of the auto immune problems that so many of us have. Any other thoughts out there???? Kathleen Help section: /help/ NOTE: NCC refers to posts with No Chiari Content Unsubscribe Yourself: chiari-unsubscribeegroups WACMA Home: www.pressenter.com/~wacma WACMA List: www.eGroups.com/group/chiari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 Hi, Drs. Milhorat and Kula and Dr. Rosner and others do believe that NMH is caused by chiari. They are doing research in this area. I have/had MNMH. I had surgery in July 2000 and I haven't noticed many episodes since. I do believe that my problems with NMH are tremendously better after surgery. I am no longer on Beta Blockers. I used to have BP significant drops all day long. I feel like I may have small drops occassionally, and I do still have days with BP of 90/55. But mostly my BP is a higher, usually at 100-110/70. This is higher than I ever had before surgery. It was always 90/60 or 80/55. When it dropped it would go as low as45/30. I will have another Tilt Table Test at one year postop. Dr. Milhorat wants me to have one for research purposes as well as to benefit me. Love, Maureen Re: Re: lupus/some CC Hi Kathleen, From what my understanding of Neurally Mediated Hypotension is, it also has something to do with lack of blood flow to the brain. My daughter has NMH and Chiari/sm, the NMH being diagnosed first. I am also convinced that Chiari causes alot more problems than the doctors tell us it does. I've stopped waiting for help from the medical community and am researching all the different diseases/conditions my daughter has ever been diagnosed with (CFS, NMH, ACM1/SM, and possibly FMF) and am having more success than I've ever gotten from a doctor. Eventually they will catch up with us (LOL). Quote Link to comment Share on other sites More sharing options...
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