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does my mri suggest chiari and/or craniocervical instability?

i was born with ehlers danlos and spina bifida, I've had to have several surgeries. I have a history of times not being able to hold my head up and about 10 years ago severe off balance, headaches, ringing in ears, swallowing issues, passing out or feeling like it was, at times hands and feet tingling and they would become very weak and i'd have to sit down.  when they xrayed my spine, my head wasn''t even on my neck correctly. had to have intense therapy and vestibular therapy. it helped but had flare ups. now it's hit again, more severe this time. I feel like I can't control my head it feels like at times. I get a brain scan next week but the neurologist i'm seeing is not a specialist in eds or any of the issues related to that. so im concerned such issues are going to be overlooked. I have mri images in my photos. my physical therapist noticed my brain seems to be shifted. does anyone think this looks like chiari or instability at craniocervical junction?
1 Responses
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the CHIARI forum.
I am not a medical professional and the MRI the one to the far right is too blurry for me to comment,,,,and I am not experienced to comment on the other views you have,,

Chiari and SB are related conditions...it is possible you have CHIARI and it is possible it is something due to the EDS,,CHIARI is a congenital condition as well as EDS so it's possible.

Having the right Dr is key, you need someone that knows how these conditions are  related and how treating one can affect another.

Once you get the new scans, do put them us as I am hoping they are clearer than the ones you posted...the blurry view on the right is the only one I am familiar with to notice Chiari or a few other issues...but the one you have I can't really see anything.

May I ask what area you live in? Maybe I can offer names of Drs to check out?
6 Comments
thanks for your input and yes this was a cervical mri, they found some moderate issues in my neck. I live near Roanoke, va. thanks again.
Ummm what neighboring states can you travel to, as there are no listing at this time for your state......MD, NC, TN.....?
Any of those states I can go to. I'm like 50 miles  north of Roanoke right of I81
Hi, here are a list of Drs in those states, this list is not a referral nor an endoresment for those listed it is meant to be used as a tool to help you start your research on Drs.....Having the right Dr is key. Do educate yourself so you will know which Dr is right for you.

If you have other states you would like to try, let me know and I will look to see if we have any Drs for you to research there.



MARYLAND

Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390


Dr Marcella Madera
Primary Location:
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD  21287
Building: Meyer
Room: 5-109
Phone: 410-955-5464
Fax: 410-502-3399
Appointment Phone: 410-550-093

Dr. Powers
Bethesda, MD

NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076

TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
(615) 327-9543

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
(865) 524-1869 (Office)
thank u so much for the info!!! I have an mri tomorrow of my brain and brainstem. gonna try to get a copy of the mri. so at least I got this step done. thanks again
You are very welcome. Keep us posted on how it goes.
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