Hi all. I was just wondering if anyone had visited any of the Chiari Centers. I was recently dx in July 2013 after years and years of suffering. I was dx with migraines at age 10 1/2 and so over the years everything that caused pain was blamed on migraines and over the years as the pain got worse and would linger for weeks nonstop I was dx with clusters. But I knew something was different. Then I started getting dizzy and stumbling around and then I would have episodes of vision changes. I finally found an excellent Neurologist that ordered an MRI....thank God. The CM was found. I was referred to a NS. The first NS walked into the room of my visit, didnt shake my hands or come near me, pulled my MRI up on the screen and told me that he would not recommend surgery at this time and that the CM was not the cause of my symptoms. I had the good sense to have more than one appointment lined up. The next NS discussed my MRI at great length with my husband and I and told us that the 9mm was alot but he needed to see more so he ordered another MRI of the brain and spine with CSF flow study....the test revealed that the 9mm was now 13mm in less than 6 weeks. I was scheduled for a decompression surgery. I started to burn in my back and side and had blood work which revealed that I had active Shingles. Surgery was postponed and so I am living with the pain longer. I was referred to physical therapy which was very difficult to schedule because no one wanted to touch me...I finally found a neurological rehab not afraid of CM and now I have 3 days a week to help with pain. But I deal with people that seem like they are learning about CM as they go. So I see these Chiari Centers and was wondering if anyone has had any experiences with the centers?
I see Dr Oro at Chiari Care Center in Aurora, CO (Denver). I went directly to him, so have no other experiences w/ other NS's but I would strongly recommend looking into a NS who does a lot of work with CM!
I went to the Mayfield Chiari Center. I love my NS (Dr. Ringer) and he was very knowledgeable. I also consulted with a NS at UVA who said Chiari only causes headaches and that he would do the surgery but that I shouldn't expect my other issues to be impacted. I didn't feel comfortable with him so moved on to Mayfield. I'm glad I did. I'm 1 year post op and so many things have improved above and beyond headaches! :)
My decompression was done at the Chiari institute in WI. I think they did a great job with my brain, but I still need help with my neck. Also, there is a member recommended doctors list on this site. A docs name is listed each time they got a “vote”
http://www.chiarisupport.org/forum/attachment/download?id=5129359%3AUploadedFile%3A221343
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Thanks my appointment with Dr. Heffez is 10/16/13 so it is very encouraging to hear from a real live patient that experienced the decompression. I am very nervouse. What do I expect.
Sharon,
Dr Heffez is incredible. I am sorry you had bad NS experiences but many of us do. There are some incredible NS in your state if you feel you would like another opinion. Please let us know how your appointment goes.
My appointment consisted of: dynamic brain MRI (cine), lumbar MRI ( to rule out tethered cord),blood work, BAER test, consult with a Chiari institute neurologist including complete neuro and reflex testing, then consult with Heffez including review of Mris, complete neuro and reflex testing, Q and A.
Best of luck! I think Heffez is very skilled with chiari brains!
Jenn
Thank you!!!
I just had my first visit with Dr. Oro 2 weeks ago. His staff is wonderful! They listen and run through a full array of testing they see to be necessary. This is a Chiari Care Center. They are in Aurora, Co. (just on the outskirts of Denver). They are helpful and kind. Oro is a very personable Neurosurgeon and one of the top in this field.
The office wasn't overcrowded and the imaging facility, eye dr, hospital ect are in the same complex making it unnecessary to drive to your appointments through out my visit there. The appointment takes place over 3 consecutive days. They also send sheets of places to eat, lodging, and other info with your patient packet. They are all within walking distance.
The most professional and courteous team of Dr.s I have seen in years.
I very highly recommend him.
You do need to have a Dr. referral to get an appointment. Took me 4 weeks from the time my Dr. at home made the referral to the day I was in Aurora fro the appointment. If you need financial help with travel please message me personally for some more info.
Thanks I was wondering how close to your initial appointment was your actual decompression?
My surgery was 8 weeks after my initial appointment with the surgeon who did my decompression.
My surgery will be about 10 weeks from my initial appointment with Dr Oro…it took me 3 weeks to decide to schedule it.
OK thanks just trying to figure it all out the finance and being out of work while still having all these appt and medications.