Aa
chiari 1.5
After my last MRI report stated that I had Chiari 1.5, I did some researching. With Chiari 2, not only does your tonsils herniate but your brain stem drops as well and you have spina bifida. I have the first two but not the second.
I have seen another neurolgist to see if he could help me or at least point me in the right direction. With my insurance, I can only see someone in my own state (ky). I asked him about the Chiari 1.5 and he informed me that there is no such thing and that it was a typo. I asked him how could it be a typo? The report is from two different doctors and it's in the paperwork 3 different times. He wouldn't even look at the MRI.
I went to my family doctor to see if he would refer me to another dr. He told me honestly that I probably knew more about my condition than he did, but he told me that we'd try to go a different route and go to UK in Lexington.
Sometimes I just feel like it's hopeless. It's so frustrating dealing with this mess. I mean there are whole institutes dealing with Chiari! Why are all these other doctors sitting in the dark? I would kinda understand if it was so rare that only like 1 in a million people had it, but there are alot of us out there. Why are these doctors not more knowledgable about this?
I feel like just screaming sometimes but goodness I would regret it!
AAAHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!! There alittle better :)
Here's a pic of my MRI.
Thanks for reading me spouting off :o)
crissy
I have seen another neurolgist to see if he could help me or at least point me in the right direction. With my insurance, I can only see someone in my own state (ky). I asked him about the Chiari 1.5 and he informed me that there is no such thing and that it was a typo. I asked him how could it be a typo? The report is from two different doctors and it's in the paperwork 3 different times. He wouldn't even look at the MRI.
I went to my family doctor to see if he would refer me to another dr. He told me honestly that I probably knew more about my condition than he did, but he told me that we'd try to go a different route and go to UK in Lexington.
Sometimes I just feel like it's hopeless. It's so frustrating dealing with this mess. I mean there are whole institutes dealing with Chiari! Why are all these other doctors sitting in the dark? I would kinda understand if it was so rare that only like 1 in a million people had it, but there are alot of us out there. Why are these doctors not more knowledgable about this?
I feel like just screaming sometimes but goodness I would regret it!
AAAHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!! There alittle better :)
Here's a pic of my MRI.
Thanks for reading me spouting off :o)
crissy
COMMUNITY LEADER
Hi Crissy...vent away..we all want to know the same thing, unfortunately med schools do not update the info they teach on chiari so Drs have a false sense of what it is and is not......Many of the true chiari specialists do their own research and that is y they r the best ones to see.....
I always say, Chiari is not a rare condition, it is knowledgeable Drs on chiari that is rare!!!
Xcuse me I am confused, u have to stay in ur state of KY but will go to the UK????Can u explain?
"selma"
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
