Chiari Malformation Community
Dr, appointment follow-up
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Dr, appointment follow-up

Ok so my Dr. tells me 4 weeks ago that what they would do is go in and remove bone to make room for my brain that is herniating through the opening in the back of my skull. So I'm freaked out these last few weeks waiting for the results from my second MRI only to be told that what I have is Cerebellar Ectopia. What is that. (Time to google that one) So now I'm being told that I don't quite qualify for Chiari. Why I ask. Because my tonsils aren't pertruding through the opening. Ok so what qualifies a person to be diagnosed with Chiari. I have all but a few of the same symptoms as everyone talks about. I live in pain in my body on a daily basis, I get the migraines that just knock you down so now what? Should I get a second opinion? Who would I get a second opinion from? There are only 2 in the state of California who are Chiari Specialists. I wanted to punch him in the stomach for making me think for the last 4 weeks that I needed surgery. I'm so confused.
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620923_tn?1405964489


  It means ur cerebral tonsils are herniated...this happens with chiari....

  The criteria in most Drs eyes is a 5mm herniation, however, it is not the only thing they should be looking at, unless u have a true chiari specialist u will only get frustrated.

U may have to travel, I went out of my state to go to a chiari NS....the ones here have no idea.....

Did they do a CINE MRI?...Check for overcrowding?...check for syringomyelia?

  Deff get another opinion...get copies of all MRI's and u can send them for a review by many chiari NS's...some charge a minimal fee, some do it for free....but it is well worth the efforts to go to a chiari specialist.

   "selma"
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He is a chiari specialist and he said that he trained with the Dr's that did the research on chiari. So I don't know what to do now. He said that I need to do cervical taction 4lbs 1 hour daily and increased my Gabapentin. Then follow-up with him in 6 weeks. This is that Dr. I was telling you about. He is a chiari specialist. But maybe I should get another opinion.
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Y traction, do u have cerviocranial instability?....I am as confused as u....
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I have no idea either Selma. I just want to cry. I can't find anything that tells me what cerebellar ectopia is. I've tried to google it and am coming up empty. I don't know why he's told me to do this. I guess I'm going to try acupunture to see if they can help releive some of the pressure in my head. It's constantly there on a daily basis. Maybe he's just trying other things first. IDK but I can't take this anymore. I need answers. Thanks selma for being here to help.
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620923_tn?1405964489

  I told u...it is when u have low lying tonsils, like in chiari...but see it does not meet their "criteria" so they want to call it something else....

ec·to·pi·a  (k-tp-)
n.
An abnormal location or position of an organ or a body part, occurring congenitally or as the result of injury.

cer·e·bel·lum  (sr-blm)
n. pl. cer·e·bel·lums or cer·e·bel·la (-bl)
The trilobed structure of the brain, lying posterior to the pons and medulla oblongata and inferior to the occipital lobes of the cerebral hemispheres, that is responsible for the regulation and coordination of complex voluntary muscular movement as well as the maintenance of posture and balance.

PM me who this Dr is again, sorry I forget who it is.....this is bugging me.
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Sorry how do you PM again? lol I'm not too bright.
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620923_tn?1405964489

  Run ur mouse over the name of the person u want to PM (the blue name is a hyper link) u will see a list pop up or u can click to go to the profile page to find it listed there too....
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