4mm Tonsillar Herniation

[ceo83]

Hello to All,
ITs been a while, been very busy mostly sick.
Just an update and what you guys think.

The first MRI, findings were borderline low lying tonsils.The second MRI showered a 4mm cerebelllar tonsillar ectopia ,with Expected overcrowding . but no visible compression of the blood vessels at the base of the skull. ( not sure what that means???)

Question: Should I ask for any other Diagnostics test. How much difference will a stand up MRI make. I have been reading and the herniation size is just a part to a whole. I have read that 5mm is the staNDARD. So does it mean that my 4mm herniation , is not considered CHiari 1?

None of the previous findings froim the last MRI were even mentioned.in the  was even mentioned at all. Likely not important.

I see the Neurologist  Thursday, has been scheduled for 2 months, and its finally here. Yeah I know 2 months is crazy.  I dont even know if this neuro( second opinion) , 2nd visit ever with a Neurologist. Just very scared he will dismiss it , just as the previous neurologist. And it willl all be a a waste of time.

[Kayera]

Depends on who you see. Dr. Seiff believes in Chiari "Zero" he is in Vegas. Dr. Heffez in Wi as well. Mine is measured 3-5mm and I have the dx of Chiari 1.

[selmaS]

  I felt alone too, until I found this forum....know u r not alone as long as u come here : )

And to be afraid of the unknown is normal, we r all afraid and this is y it is so important to educate urself as much as u can, if not to help u find the right Dr, but to also help u understand what they r talking about.

  Never apologize for saying how u feel, that is y this forum is here, we all understand and have been where u r and felt the same.....when I first came I felt my issues were nothing like what some of the others deal with, we should not be comparing our symptoms to others , but how we feel and how it has changed.

((hugs))

[ceo83]

I feel scared, because of how sick I feel sometimes, and alone and AFRAID
of the unknown. Yes I am working on finding a  CHiar specialist, I think I have not alot but, enough knowledge, in that at the least I have to be my own advocate.

I have gathered a list and will start contacting specialist.  I know they are other that have far worse, and I pray each and everyone of you . And that my situation maybe peanuts in comparison. But I know in my heart there is something wrong and will kill me , if I dont kill it first.  Im sorry that was alot, sorry... MY soul is in pain too...

[selmaS]

  Hi....I get so frustrated by the way so many Drs determine if WE have Chiari...chiari is the malformation of the skull not the herniation, that is a result of chiari....and it is so frustrating to hear people ask this question.

Ur question is r u a surgical candidate and do u need further eval.....

The expected overcrowding may refer to a retroflexed odontoid, so I would suggest sending ur copies of ur MRI's to a chiari specialist as they will know what to do.....this issue is far more important then the length of ur herniation.

At this point u should be seeing neuro surgeons that r well experienced with chiari not neurologists as they dx, u have a dx now u need to know who can do what for u......