Ok, so since I have been diagnosed and found out I have a syrinx I have been researching NON stop. I cant keep myself away from the computer. I live in the Cleveland area and I have a great neurologist, and a neurosergeon (that I am not crazy about) that I am currently seeing. We have determined that I need to have the surgery, but I am just not comfortable with the sergeon I am currently seeing. Through my "research" I have come across Dr. Oro in Denevr and Dr.Bolognese in NY. I seriously was considering travling to see both doctors (i am a flight attendant so I fly free) for a consult, but then I realized I will be facing a few other issues. One, I want my family to be with me (they fly free too), but there will be additional expences that will come with that. The other problem is that I may be loseing my insurance to COBRA very soon , which I cant afford. I would qualify for medicade but then I cant travel out of state. So, I have begun my search again and I am considering the Cleveland Clinis.....there seems to be some doctors there that specialize in Chiari.....which is what I want....a doctor that SPECIALIZES in chiari, not just some doc. that has chiari surgery on their checklist. So.....I am looking to meet with Dr. Luciano and/or Dr. Rasmussen. Has anyone heard of either of these doctors or have any experience with them???? I am just so confused and dont know which way to go......thanx!!!
We met with dr. Violette Recinos a NS at the clinic last week. She was great. She specializes in chiari and syrnixs. Her and her colleagues there are well versed in these matters. She treats children and adults, and as such she has an amazing bedside manner. Check out a presentation she gave here http://www.csfinfo.org/node/214
We are meeting with a new chiari specialist neuro on we’d and will let you know how that goes.
Thank you I will check out the video. I would deffinitly be interested in hearing how your next meeting goes. Thank you!!!