Sue Posted September 15, 2004 Report Share Posted September 15, 2004 Among some other things found in my test results, one was a chiari malformation. The neurologist suggested I forward this information to Dr. Grubb. Does anyone have any background with this and what kind of information can you give me. I am started to research and thought I would start here. Thanks like always Sue Quote Link to comment Share on other sites More sharing options...
fouronmyskirt Posted September 15, 2004 Report Share Posted September 15, 2004 Here is a great site to check out:My Webpage. Hope this helps. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 15, 2004 Report Share Posted September 15, 2004 You might try checking the WACMA site:http://www.pressenter.com/~wacma/they also have a forum you may want to check out.http://www.pressenter.com/~wacma/subbing.htmBe sure to check out the sections of "on site" and "off site" links on WACMA.Chiari Malformation, simply speaking, is brain stem compression. The compression can range from very minor to severe--and severe compression can cause problems with intracranial pressure with the cerebral spinal fluid.A consistently good site for health information is the National Institutes for Health (NIH). Their info is always reviewed by leaders in the field prior to posting, so you can typically trust info on their site:http://www.ninds.nih.gov/health_and_medica.../chiari_doc.htmNina Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 17, 2004 Report Share Posted September 17, 2004 Hi,I have chiari and also spinal stenosis. The web sites that Nina listed are very informative. My chiari is not typical however, and very little herniation. Mine is more of a stenosis of the brain stem along with some irratation from cervical cranial instability which was recently diagnosed by Dr. Bolognese at the Chiari Institute in NY. Dr. Bolognese said a piece of my C1 in my cervical spine looked like it is rubbing on my brain stem area---possibly adding to my POTS symptoms.Dr. Heffez in Chicago is a Neuro surgeon who did my first surgery on two herniated disks that I had in addition to the other problems. Because of the double amount of pressure on my spine----surgery was advised. If I would have waited, I may have risked spinal injury.I have read a lot about chiari---spinal stenosis-------and of course all the different forms of dysautonomia. I have learned a lot, but still I must say all these conditions are not cut and dry and are very confusing. Many medical professionals have very little knowledge on dysautonomia---and chiari........Julie :0) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 17, 2004 Report Share Posted September 17, 2004 Julia, Dr. Heffez is no longer practicing in Chicago. I believe he's now located in Milwaukee, WI. If you'd like, I can check with Dorothy, as she's the one who let me know that he closed his Chicago location.Nina Quote Link to comment Share on other sites More sharing options...
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