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Chiari Malformation Community
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MRI 5mm tonsillar ectopia, see neurosurgeon this week

Hi! I recently had a MRI due to neck pain and headaches. I have a history of migraines with aura but 3-4 years ago started developing headaches that started in my occipital region. The pain would spread behind my eye and down my shoulder. Nothing would help. I wake up with these headaches and it's becoming more frequent. I've also experienced visual disturbances where I feel like I can't focus. And I've stopped drinking alcohol due to the terrible headaches I've had for days following even one drink. I also have some loss of strength and sensation in my right arm/hand which tends to be the side more commonly affected.

My MRI showed 5mm of cerebellar tonsillar ectopia as well as a slight disc bulge at C6-C7. I meet with the neurosurgeon on Tuesday. I have not been diagnosed with chiari but should I be asking about it? What other questions should I ask? And are there any chiari specialists in Minnesota that are recommmended should I end up with a diagnosis of chiari?

Thanks for the help!
2 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

More testing should be done before seeking a neurosurgeon as you will want to rule out ALL related conditions first and make sure you have a true Chiari specialist.....not all areas have a Dr so you may need to travel....here is the list for your state....keep in mind this is not a referral nor an endorsement for those listed....you must research the Drs to determine if they are true specialists and if one of them is right for you.

MINNESOTA

Dr. Mahmoud Nagib
Neurosurgical Associates
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Phone 612-871-7278
Fax 612-863-8531

Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine


See what the Dr looks at...if he/she is focused on the herniation length and not any thing else like CSF flow, or related conditions then this may not be the Dr for you.

Ehlers-Danlos*  is another very important condition that is related and needs to be ruled out early.

MRI's of the brain, cervical, thoracic and lumbar spine as well as a CINE MRI.....

Disk issues is common for those with Chiari....especially those with EDS*
Avatar universal
Look up NS in your area you might have too go a ways its best to research for yourself and directly ask if it a chiari if not what is it and if you don't understand don't be afraid to tell Dr to explain it where you understand
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