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Which Dr. to see? Maybe both?
I just got a call this morning with an appointment to see Dr.Tew (NS) in Cincinnati on April 28th. He reviews your MRIs and CT scans first, then decides if you need to be seen. I currently have an appointment with Dr. Di on April 21st. Cincinatti is 2 hours from my home and Cleveland is a 6hour drive. I have read some great things on here about Dr. Di, and about Dr. Tew also. I'm struggling to decide which Dr. to go to.
An epileptologist at Cleveland just diagnosed me last week with a stress disorder and told me the Chiari wasn't causing my problems. A part of me wants to go to Cleveland so it will be in my medical records there and he will be proven wrong. I get so humiliated at these doctors that aren't Chiari specialists giving their "opinion" and writing it in to my permanent medical records. Since there are so many of us out there with CM, why doesn't these neuro's have to study this problem more intensely?
Sounds like a good plan...I know it is hard to choose b/w them but I am so glad that you are getting so many offers of help. From what I have seen Dr. Heffez is a really solid choice so it is good that you are starting with him. I would keep the other dr for a second opinion...
Carolyn
Carolyn
I would go to both. The more opinions we can get the better. I am going to see Dr. Di on the 21st also. I hope we both get some answers and find some relief.
I am in the same quandry now! Dr. Kula in New York accepted me and I have appt May 5th, but doesnt take my insurance. Dr. Heffez in Wisconsin has reviewed my records and made me an appt on May 5th TOO (lol), then 20 minutes later Dr. Hampf's office called and said he reviewed my records and wants to see me too!!!! Dr. Kula and Dr. Heffez are both a 2+ hour plane trip, Dr. Hampf is a 6 hour car trip. I want the best fo ME and my personality. Dr. Kula is out unless Divine Intervention happens with $$$$ But then at least I wouldnt have to make a decision, I would KNOW where I am suppose to go.
I guess I will go to Wisconsin May 5th and depending on what happens, maybe Dr. Hampf for 2nd opinion......
I guess I will go to Wisconsin May 5th and depending on what happens, maybe Dr. Hampf for 2nd opinion......
I think you should go see both. It never hurts to have two opinions! Even if they both tell you the same thing, one may have a better "bedside manner" than the other. Oh, and i have heard good things about both of those drs. Good luck! Shannon
I think you should go see both. It never hurts to have two opinions! Even if they both tell you the same thing, one may have a better "bedside manner" than the other. Oh, and i have heard good things about both of those drs. Good luck! Shannon
It seems like everyone of us have heard those same words "Chiari isnt causing this..."
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As far as NL vs NS...my NS told me that a lot of NL are not qualified to dx Chiari b/c it is in the surgical field more then neurology. As my PCP once told me NL's are "testers not doers"...and since a lot of the nerve tests they routinely do, in a lot of cases, come out fairly normal with Chiari...then you can see why they aren't good a dx it. However, a NS looks at different things to make a dx, like CSF flow, overcrowding in your brain or a simple thing like checking you gag reflex!! I had an EMG after I saw my NS..I had insisited on it with my NL before I knew I had Chiari..my NS said to go but he said that it would probably come out fairly normal..and that it really had no bearing on his dx. It did come out "fairly" normal depending on which way you look at it...
So, I am just so glad that you are in the hands of the RIGHT specialists now and I hope and pray that you get the answers you need.
Keep us posted!
Carolyn