Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 In a message dated 3/14/00 7:16:22 PM Eastern Standard Time, edesousa@... writes: << Does anyone know this to be true - that there really are many asymptomatic patients with herniated tonsils? I'm sure many of these people's symptoms are really Chiari-related but the docs don't know it, for whatever reason, and these people get misdiagnosed. However, if this is really true, then that may explain why so many docs don't consider Chiari significant at all.>> Eurico, I think you are right! My tonsils are herniated down through C2 [no one has given me this measurement in mm] The one and only time I was seen by a neurologist - he said my symptoms were not chiari related. He says they are 'depression'. My family and friends, who certainly know me better than someone who spent 30 minutes with me, say I am most definitely NOT depressed. I do believe my symptoms are chiari related - but, OFFICIALLY, the chiari is listed as an " incidental finding " . This makes me wonder if he 'forgot' that the reason I was referred to a neurologist in the first place was that I was having " significant neurological " symptoms - not symptoms of depression. He is under the mistaken opinion that chiari cannot cause problems in the extremities. The symptoms I have could certainly have another cause. And what would that cause be? They didn't find any other problem. They found chiari. If there are any asymptomatic chiari's out there- will you please come forward. We'd like to meet you. Peggy ACM 1 Herniation down through C2 [who knows how many mm's] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 I've recently had two docs tell me that they often see people with Chiari (tonsillar herniation) while looking for something else and who are asymptomatic or have non-Chiari related symptoms. Now, I know that many docs attribute symptoms in these cases to " something else " and I'm sure many of these people's symptoms are really Chiari-related but the docs don't know it, for whatever reason, and these people get misdiagnosed. However, if this is really true, then that may explain why so many docs don't consider Chiari significant at all. Does anyone know this to be true - that there really are many asymptomatic patients with herniated tonsils? Eurico Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 When my ACM (20 mm) was found in 1995 during an MRI for severe headaches, the nsx said it had no relation to the headaches, even though the radiologist said it did. The symptoms got worse, and thank God we had moved to Columbia, MO. My husband was working with a neurologist on a Fri. afternoon and was discussing my symptoms--he said he wanted to see me Mon. am, and I had my frst decompression a week later (which worked well until I fell 6 months post-op and screwed everything up again. The doc that did my 2nd decompression 6 weeks ago (Dr. Oro) trained my first doc, coincidentally. The jury is still out on whether we did enough this time--am still having bad headaches and other symptoms and am still on pain meds and steroid as of yesterday to see if this helps. Part of my problem is that I did not give myself enough reovery time-- went back to school (I graduate in May and refused to drag it out anoher semester) and work full-time 3 weeks post-op, and I guess I'm paying for it. I would not recommend this schedule to anyone unless it is unavoidable-- guess I've brought this on myself and have subsquently lost my bitching rights, so to speak! Don't want anyone to take this as a suggetion NOT to have the surgery if you need it, and I was quickly becoming nonfunctional. DO keep in mind, though, that it is NOT an instant cure, nor a magic bullet, and the recovery process is not a cup of tea. This is not hangnail surgery -- this is MAJOR brain surgery, and there are risks involved as with any surgery. Just keep these thoughts in mind. ACM 1, etc. ( decompression with 2 laminectomy and dural graft X 2, basilar invagination, cervical stenosis, ACD w/fusion C5-6, lumbar laminectomy L4-5, hypothyroidism, cluster headaches, blah, blah, blah!) In a message dated 3/14/00 7:16:22 PM Eastern Standard Time, edesousa@... writes: << Does anyone know this to be true - that there really are many asymptomatic patients with herniated tonsils? I'm sure many of these people's symptoms are really Chiari-related but the docs don't know it, for whatever reason, and these people get misdiagnosed. However, if this is really true, then that may explain why so many docs don't consider Chiari significant at all.>> Eurico, I think you are right! My tonsils are herniated down through C2 [no one has given me this measurement in mm] The one and only time I was seen by a neurologist - he said my symptoms were not chiari related. He says they are 'depression'. My family and friends, who certainly know me better than someone who spent 30 minutes with me, say I am most definitely NOT depressed. I do believe my symptoms are chiari related - but, OFFICIALLY, the chiari is listed as an " incidental finding " . This makes me wonder if he 'forgot' that the reason I was referred to a neurologist in the first place was that I was having " significant neurological " symptoms - not symptoms of depression. He is under the mistaken opinion that chiari cannot cause problems in the extremities. The symptoms I have could certainly have another cause. And what would that cause be? They didn't find any other problem. They found chiari. If there are any asymptomatic chiari's out there- will you please come forward. We'd like to meet you. Peggy ACM 1 Herniation down through C2 [who knows how many mm's] ------------------------------------------------------------------------ WACMA Site: http://www.pressenter.com/~wacma Your Personal support group member page: http://www.eGroups.com/group/chiari/ **Avoid List Congestion: Unsubscribe from this list: mailto:chiari-unsubscribeegroups Contact list mgmt: mailto:chiari-owneregroups ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 when living upstate NY i ran a support group for fibromyalgia patients, for a period of 5 years. i basically taught the members how to meditate to lower their level of pain. during the 5 years, somehow we told about tonsils, and i noticed that almost all of the members did not have there tonsils i send out 50 letters and e mails to every person i knew who had fibromyalgia, and found that of the 50 people , 48 had no tonsils and 2 had there tonsils but had constant infections. maybe this is something to be looked at. Also I have copies of meditation for pain control if anyone wants a copy I could send them via e mail or mail. Sending piece and love. Margot Quote Link to comment Share on other sites More sharing options...
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