Mayo Clinic-Not all its cracked up to be

[Jenthefisher]

Hey guys,
I am just writing to discuss my latest doctor experience and to possibly save a trip for some of you considering the Mayo Clinic.
For starters;I have a 7mm Chiari Malformation Type I, and was diagnosed with that in May of 2009. I was mostly asymptomatic up until that time and then last April everything changed. Looking back there is no one incident that I can pair it to, my body apparently decided it was time to exhibit symptoms. I have dizziness/vertigo just about everyday, headaches and neckaches constantly, difficulty swallowing, trouble sleeping, trouble breathing while preparing to sleep, numbness and tingling in my arms and legs, ringing and buzzing in my ears, changes in my vision, trouble grasping for words, poor short term memory, and a few other inconsequential things. My primary physician had no idea what chiari was and actually had to google it when I was first diagnosed. She referred me to a local neurologist and he said that my chiari was an incidental finding and that I am fine and my symptoms must be from something else. After seeing an ear nose and throat doctor as well as a cardiologist to rule other things out, I was left with chiari. I know that it is the cause for most if not all of my symptoms and decided to set up an appointment at the Mayo clinic for some help. After all, they are supposed to be the best. I was first seen by a student who did a complete neurological exam, and then he went to confer with the neurologist currently working. Dr. Meissner, and the student Dr. Olsen came back into the room and she went over a few additional questions with me. She told me that the chiari was...once again....an incidental finding and that something else was causing my symptoms. I questioned her and told her what I know about chiari and what I hear from everyone on these groups. She stuck to what she originally said and ordered tests that I had already had for balance and for my heart. After doing those and having nothing show up, she was out of ideas and that was the extent of my visit.
I guess I just thought that the best doctors in the world would acknowledge what I already know is true. But they wouldn't even tell me that chiari was causing this, or that it was even a possibility. So for what its worth, I do not believe that the Mayo clinic is the best place for chiari patients. I know there are other doctors there, and if you speak with them and they are well versed in chiari-then perhaps I am wrong. I just think the Mayo is a bit overrated and though they are excellent in the care of many other diseases and illnesses, chiari is not one. So if anyone is on the fence about making the trip perhaps you should call and check on what your doctors background or history with chiari is. I have heard this from a few other people already, but was hoping my visit would be different. I was wrong and now will continue my quest for MY doctor. I am sure there are some people that have had good visits, and that is a great thing, it is wonderful to find someone who believes in you. I am just saying in general I don't think it is good for chiari.
I apologize for the rant and rave, but needed a place to vent!!!
Thank you all- good luck and God bless.
~Jen

[selmaS]

HI Jen...so sorry u had another disappointing visit with a dr u felt was going to help......and thanks for sharing this info it may be able to help others avoid this from happening to them as well.

Knowing ur herniation is large enuff to be considered chiari by non chiari specialists makes me feel this is deff not a good place if ur herniation is smaller than 5 mm.....

Again so sorry u had such a bad experience there...and i hope u find the dr right for u soon !!

"selma"

[*Stormy*]

Hi

I'm sorry that you are having such a bad time...your story is strikingly familiar to mine.. All those symptoms are so much like Chiari ones, I can't believe that no one is pursuing it. I was told too that mine was incidental from a neurologist who everyone told me was good but I was lucky enough to find a NS who had a different opinion and he told me that this condition is much more a surgical field than and to disregard what I was told previously.He also told me that I was really lucky, most people go through years of trying to get diagnosed and even are put through physciatric treatment.  I had the surgery 5 weeks ago and saw an immediate improvement in my gait, I still do have a lot of other symptoms but that one thing really clarified to me that he was right. Have you seen a NS? If there is anyway that you can get to see one, especially one that is experienced with Chiari?