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#1 | ||
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Junior Member
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#2 | |||
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Senior Member
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You must find a chiari expert . That is no1 . Not a neurologist a neurosurgeon. Where do you live so we may help you. Roz
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Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile |
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#3 | ||
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Junior Member
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I live in Oklahoma city area. I have an appmnt with an OU nerosurgeon next week and am trying to get in with another in the Mercy group. Any help with a good surgeon would help alot. The surgeon that my primary care sent me to is all about doing the surgery but like I said he has only done one. My KFS is not helping the situation, 4 of the vertebre in my neck are fused, arthritic,bulging and are compressing on my spine. C2 and C3 are fused and C5 and C6 are also fused. Just having a hard time trying to find someone that specializes in one problem or both. Cathy
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#4 | ||
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Junior Member
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Oh I forgot, (thats funny isn't it) the surgeon is the one who sent me to the nuerologist to make sure it was the Chiari causing the symptoms and not the KFS. It is the CM and he told me as of yet I have no permanent damage to the neves after running several tests. I truely would appreciate if you know of any good docs around here or Dallas it's about a 3 1/2 hour drive. Thanks Cathy
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#5 | ||
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Junior Member
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Have you looked up Dr Oro at the Chiari Care Center in Aurora CO? Don't know if that is near you but you can contact that clinic and ask for a second opinion by phone consult, I believe. I was diagnosed in 2003 with a 10 mm herniation, had decompression with laminectomy of c1 and a dural patch to allow the csf to flow. Chiari 1 is not a condition that most drs have any experience with. My family doc is wonderful and he has been in practice for 35+ yrs ( in a large city) and told me that I was only the 2nd chiari he had ever treated in practice. Hard to believe but true for most docs i believe. Do not worry about stepping on toes or appearing to be a "head case" (lol, cause we all really are anyway). This is your body, your health, your life and future and you deserve all your questions answered and the most experienced drs available. Good luck and God Bless.
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#6 | |||
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Senior Member
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Dr. Mapstone is top chiari dr. In OK
__________________
Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile |
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"Thanks for this!" says: | Hockey (02-21-2010) |
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#7 | ||
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Junior Member
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Well, I went to the new NS on Friday. He is young but very informed about Chiari. He is being taught by Dr. Mapstone, they are associates. I like him because he is sending me for a bunch more tests ( full lumbar MRI, Nuero opthamologist,ect..) trying to rule out everything before a decompression surgery. He says with all the birth defects that I have it wouldn't surprise him to find more in the lower lumbar. He wants to rule out tetherd cord. I guess my symptoms are not typical Chiari. I think over the years with my neck so jacked up I have just become acustomed to pain. ( I had 3 ectopic pregnancies, 1 that burst. those to me are a 10 on the pain scale) Maybe I am the dumb one but I say that living with a daily 3 or 4 is tollerable. Now I have something new to stress about, another MRI, I have to have IV sedation for that. I tried the valium (first time I had ever taken it) thought I was dong fine chillin in the loby and when they put me in, AAAHHHH!!! Made it through with the good stuff. Hope everyone is doing well, thanks for the messages, still havn't quite figured it all out yet. Enjoy everything you can,I try to. Cathy
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#8 | |||
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Senior Member
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sounds great what is his name
__________________
Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile |
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