Hello, I was just diagnosed a few days ago and already in panic. I have already learned too much about Chiari in a few days that I ever hoped for to know about it. My question right now is to find a specialist in Atlanta area. Can someone help me please?! So far I have only been diagnosed by a random neurologist who had looked at my MRI, going to see him to "discuss" my options in person on Monday. I definitely want to have a second or possibly third pair of eyes to look at my MRI before anything else and I would like to go to a Chiari specialist. Please HELP! THANKS.
Having a few "eyes" look at ur MRI and get a few opinions is a great idea....and getting copies of these MRI's and reports and all other tests u get as well is helpful in getting those additional opinions. Do request copies if u do not already have them and going forward request copies when u sign in b4 the test.
We do have a list of drs compiled of the members Drs, it is meant for u to use to research Drs not as a referral.
U r at the point of needing more testing, a CINE MRI to check CSF flow and over crowding, MRI's of the thoracic and lumbar spine to rule out a syrinx in those areas....also tethered cord, disk issues....
Other related conditions u want to rule out b4 u consider surgery is sleep apnea, ICP, ehlers-danlos.
Keep in mind u may not find a specialist in ur area and u may have to travel to get to a true chiari specialist, and this is well worth it.
U want to know how ur chiari is affecting ur over all health as well as what symptoms u present with...keep a record of ne and all new ones that occur as well....and ne triggers , this may help ur Dr determine the best course of treatment.
Welcome. I am also in Atlanta. SelmaS above advice is right on. There are no documented chiari specialists in Atlanta, although some neuro surgeons have performed the surgery . I saw dr Morrison at north side in march and have an app't with dr wray at Piedmont this week. I also saw dr heffez in Milwaukee in may at a chiara center-he performs 3 surgeries a week. I am struggling with where to have surgery. There us another dr at Emory here in Atlanta that someone on this site saw.I can't remember his same but you can look up on Emory site. I think he is head of neurosurgery department there. I would suggest getting as much testing MRI etc done here in Atlanta and then if you are considering surgery and insurance permits it, travel to a chiari specialist for an app't. There are some good recommendations on this site. If you cannot travel and decide on the surgery in Atlanta, I was advised to find neuro surgeon and hospital where they are most frequently done. I think that is Piedmont but it could be one of the others. Since we are both here in Atlanta, it would be great if we could stay in touch. June
Thank you for the reply. I am very confused right now and really won't decide on anything until I speak with my original neurologist tomorrow. Will let you guys know what he says. I am kind of disappointed to hear that there are no chiari specialists in this area :( I was thinking about going to a neurologist from Emory just for a second opinion but if it eventually comes down to having a surgery I would want someone with A LOT of experience in performing specifically chiari operations to operate on me. Right now the only symptom that I have, that's been bothering me for more than 3 weeks non-stop is the pain in my head. I don't want to call it a headache because it feels different. It's just this pain, feels almost like my head is burning from the inside and it radiates all over my head, sometimes it's in the forehead, sometimes on the side, sometimes on the back and almost always there is a constant pain (strain) in the back of my neck and shoulders. I've started a journal of my pain and also of all the meds I am taking for it. Will let you guys know what happens tomorrow at the doc office. Please keep in touch.
Want to welcome you to our Chairi family. There is a lot of love and support and you will find a lot of information here on this site. I have walked in your shoes and I still remember the day I was told I had Chairi. It is scary, but there are good NS out there that can help you. Having all your MRI and a flow study done and having all the reports yourself is a help. It is good that you started a journal to let the NS know what is going on. I wish you the best and want to let you know your not alone we are here to help in any way we can. Hoping you have a good appt tomorrow. Your in my prayers.
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