Hi All, Long time, first time :-). I was diagnosed w/ a 5 mm Chiari in August, no syrinx. I've had health issues for the last 20 yrs. (previously diagnosed as Fibromylagia). My PCP referred me to a neurologist when I had sudden short term memory loss, trouble speaking and vision issues (blurring, spots, severe pain in and behind right eye). I've now been referred to 3 different neurologists and an eminent neuro-surgeon at UTSW and not one knew anything about Chiari. I've had a CINE MRI (bcs I asked for it and had to explain why), which looked "mostly normal" but my vision issues have continued. I'm awaiting results from the optho-neurologist, who sent me for additional tests bcs I've lost some color and lower periphial (sp?) vision in the right eye; the techs at the center said my opto imaging wasn't "completely horrible" :-). I'll know more soon, but based on results, need to see if there are any Neurologists and/or Neurosurgeons in the DFW area who are in fact experts. (Vs. listing Chiari as an "interest".) So sorry for the long post. Many thanks!
Sorry, but I had to refer to ur profile to see where u were from to understand ur DFW abbreviation....Dallas, Fort Worth in TX I assume...since u r from TX.
We do not have a listing separate for optho-neuros...we have one on the list and I believe they r in Ohio....so no help to u.....
Ur best bet would be to find a true Chiari specialist and see who they know to refer u to, I am sure they work with certain Drs that are well aware of the Chiari issues.....
It is so common to go from Dr to Dr and they not have a clue...so, do look at our list of chiari drs compiled by the members, the list is not a referral, just a means to help u with ur research. To locate the list, scroll down to the bottom of this page....and click on the Health Pages link...in addition to finding the List of Chiari specialists u will find other pages of helpful tips and info.
1st I want to welcome you here and I'm glad you found this forum. We have SelmaS who is very informative which you can already see. She has helped so much with a lot of us with the direction in which you should go. I have been so blessed to have found so many other's who are also on here with so much info and so much comfort and understanding of what life with Chairi is like. I also had 5 than 6.5 mm and I got the Dr run around. It's very flustrating when your in so much pain and you know something is wrong in your body and no one will listen. I wanted to welcome you and to tell you everyone on here has helped me, lifted me up, and has helped me push through some very rough day's. Wanted to tell you I'll try to do the best and do the same for you. Wish you the best in getting answer's. Just remember your not alone. :) Linda
You can contact Dr. Thomas Ellis in Fort Worth at 817-878-5333. His office is in the professional building of Harris Methodist Fort Worth. He does 3 to 4 Chiari reduction surgeries a week. I am at home recovering from my surgery I had on November 16th. I am doing absolutely fantastic. This doctor has literally changed my life. My family can already see the difference in me and I am still in recovery from the surgery.
Thanks for sharing ur Drs info, I would like to ask that u add it to our Drs thread if his name is not already on our list....we have a list of Drs that treated the members here, we use this list to help others research and find drs....so when someone knows a good Dr we ask they add it to out thread : )
Thank you all the info and kind words! My vision tests came back normal, just a bit of thinning in a quadrant of the optic nerve in the right eye, so we'll re-test in a few months. My other symptoms seem to have cleared up, so just going to power through :-). This is an interesting ride, and not one I'd wish on anyone. Thanks again and Happy and Healthy Holidays!
I totally agree. This is a Chairian ride I never knew was going to hit me. It took me almost 3 yrs to be dx'd and when told about Chiairi. I didn't even know what it was. I am glad you found this forum because you will get more answer's and support here than you will find any where else. I wish you the best on this ride, but alway's remember we are here for you so your not alone in this. Hope you enjoyed your holiday.
I have post traumatic syringomyelia and about a year after that happened scoliosis, many herniated disc, spondylosis and osteoarthritis joined, as a result of the syringomyelia. I fell and ruptured a disc in my neck and low back. Had a fusion done on my neck and then 5 months later was hit head on in an auto accident. That accident ruptured another disc in my neck, there are more now, and the syrinx expanded to the entire length of my spinal cord to the cranium. I also have mctd, unrelated, but all together make great pain and misery. I did contact Dallas neurosurgical but they do not take my insurance. Any help would be appreciated.
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