"Your chiari herniation isn't severe enough to cause problems. You have a migraine."
The grand finale was, when describing my headache (how it's at back of skull, and radiates up and behind my left eye. worse in the morning, when I exercise, bend over, sneeze, etc..), he asks "Are you just reciting what you've read about chairi?"
He asked if I've ever heard of or been told I may have pseudotumor cerebri. I said, no. (never heard of it). He said "ok, well if your NL didn't order a LP to look for it then you probably don't have it, but the symptoms mimic chiari. Just keep taking topamax and follow up with NL."
I seriously almost started crying.
I was so scared of that happening to me. Find a different neurosurgeon, there are some out there that really want to help. How sad that "doctor" could be so mean! They just have no idea what they are talking about but don't want to admit it. Jerks! Hang in there...
Crystal
His website says he has done chiari surgeries, so I was hopeful. He's not on any of the lists of specialists though.
Beeba, my MRI has no mention of any thing related to my cerebellum at all. It was originally ordered due to profound, acute hearing loss secondary to chronic headaches. Only says "Intracranially, no mass, mass effect, edema, evidence of ischemia or inflammation. The ventricles are normal in size. No extraxial abnormality. Normal vascular signal voids. The cervicomedullary junction and midline structures are normal. A limited examintaion of the orbits and sinuses is normal."
Ct Scan results are similar only that is says there is some debris in my right auditory canal but not obstructive. No mastoiditis or anything abnormal in relation to the temporal bones.
I was only told I had a slight herniation indicative of possible CMI verbally by neurologist but that he didn't treat it. After my 2nd visit with him, he said he doesn't think it's the issue and now after this NS visit, he doesn't either. So maybe it isn't.
Maybe I'm just plain insane. I feel it right now. How can I have all these symptoms with only one explanation being a migraine? That hasn't gone away? I'm so confused.
Welcome to Chiari… I have had the surgery, and now am getting the run around because every doctor I’ve gone to points in a different direction. Stay strong and get a second, third forth…fifth opinion if that’s what it takes.
I am so aggravated with the medical ‘professionals’ that are often anything but professional!
And cry away…it’s almost guaranteed that I cry, I’m so frustrated that I can’t stop it!
My NL also said that the Chiari was not an issue, BUT it was!!! My MRI showed a herniation, but the cerebral tonsils were not that low lying. It was the width of them that was blocking the CSF from flowing properly. Get a second opinion. That NS is a JERK!!! Good Luck!
Sue,
Wow…That NS sounds like a real jerk! I’m sorry you had to go through that:( You should definitely get a 2nd opinion.
Crystal