We are patients and survivors of Chiari (types I-IV), here for your support.
This group is for Chiarian that live in GA.
Location: WARNER ROBINS
Latest Activity: on Tuesday
Started by June. Last reply by Todd Sep 12, 2012.
hello i just registered for te chiari walk in duluth GA on saturday 9/22. is anyone else planning on going - would love to meet some of you face to face :) juneContinue
I see a lot of people talking about Emory University. I had an MRI Performed there just a couple of years ago. I was being checked to see if my Acoustic Neuroma had come back and why I was having Headaches. I initiated the appointment myself. I never got a follow up appointment from their Neuro Department. The Radiologist didn't even mention that I did have a Chiari. I had to go over my scans and other radiology reports to figure out that I did have a Chiari. I normally go to the V.A., but I was hoping that Emory could find other things that they didn't see. Pretty bad when I had to finally go through my radiology reports and diagnose myself. The radiologist in 2010 had put some words in my MRI Report that looked out of the ordinary to me. He didn't even use the word Chiari. Luckily I do claims for Veterans and I decided to look up these words and figure out why I have had so many problems for so long. I had noticed a Syrinx in the report and mentioned it to a V.A. doctor in Stockbridge. He blew it off and told me that it was too small to worry about. I never looked into it until recently while I was swapping doctors and clinics. I am now back with my old doctor at the Dublin V.A.M.C. (Dr. Moti) and have been talking to Doctor Potts at the Tuscaloosa, Alabama V.A.M.C.. Dr. Potts has his own private practice and seems to be a good Neurologist. Only way that I can see him right now is through Telemedicine using camera's and computers. I don't mind that at all though, because he has really listened to me and is running multiple test to figure out the best route to take on my Chiari. If anyone knows of a local doctor in the Warner Robins, Georgia area who is familiar with Chiari, please let me know. I have SSD Insurance and I am willing to go see a local doctor who is familiar with a Chiari. If you are a Veteran or a Military person and you need to file a claim, please contact me.
. As I am sure you understand, it might take me a couple of days to get back with you, due to the many problems that a Chiari causes along with my lower back problems that have been real bad on top of all of the other problems that I have daily. My website is www.help-a-veteran.org .. All of my contact information is on there. If you decide to contact me by phone, please Text me. I have been having real bad Migraines and back paines that have kept me in the bed a lot recently.
I was diagnosed in Nov. 2013 with Chiari 1 Malformation. They also found a brain aneurysm, which I had a stent put in for in Dec 2013. I had a CINE MRI and was told surgery would be a benefit due to attenuated CSF and the 63 symptoms that I have. I was told this by Dr. Barrow at Emory. My husband and I really like him. I joined several groups on FB for Chiarians and I see a lot of negatives about Dr. Barrow and a lot of members only recommend seeing a true chiari specialist. I am nervous about everything now because my insurance will not pay for the chiari specialists but they do cover neurosurgeons here in GA. I am going to pay out of pocket and have a consult with Dr. Rosner in NC and bring the notes back here. Does anyone have any advice as to how to deal with this?
Thanks so much for your responses :) I'm happy to hear someone who doesn't regret having the surgery! I feel like that's rare around here..
I have not had the surgery yet, and wrestling with that decision. But I did see Dr. Barrow and he is very kind, calming, answers all questions well and completely and seems highly competent to perform the surgery. The experience with his office and him was great. Let me know what you decide and how you do! Best of luck, Lydia
I have an appointment with Dr. Barrow at Emory on May 22 to decide if surgery is the right route. Can anyone tell me about your experience with Dr. Barrow or with surgery in general? Thanks a million :)
Hello fellow Georgians
Found you all looking for info on Dr. Wray and Dr. Barrow, neurosurgery in Atlanta but different practices. Glad to feel the chiari vibe close to home.....;)
I am trying to decide if going w surgery is the best solution right now. I feel it probably is, because I suffer/think/worry about this chiari thing about 75% of my day now. How are all of you doing now? decompressed? Hope your days are good! Thanks
I had my surgery at Emory-Crawford Long in January 2008. I also used Dr. Hadjipinayis (?sp). He was great, as were his associates. Unfortunately, I had a lot of things go wrong, I had a cerebral leak, spinal meningitis, and a hydrocephelus. Therefore, I now have a cerebral shunt. But from what I understand, these things are rare. Just unlucky for me.
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