Hello everybody! So I would just like to say that I have no idea what I am doing or what to do next! I know that since my last MRI 6 months ago my headaches have gotten a hundred times worse. It took me getting a copy of my scans and one of my BFF's to find out what was going on. I saw what was going on after comparing my scans to others with CM. Now I am at a point where I need to see a NS and I need a referral. I am still pretty sure that all of these doctors are trying to blow me off! I have been trying to tell them for 3 years that this pain is way worse than a migraine and it feels like my brain is falling out of the back of my head! The neurologists I have seen in the past all just assume I am a crazy drug addict looking for a fix! They sent me to a psychiatrist who put me on meds that made me crazy. All I want is to feel better so I can be a better mom and wife. Why won't anybody listen to me? I love my family and just want some relief so I can go places and do things with my family!
Sarah Marie,
I am so sorry that you have been treated that way. Unfortunately it is very common. I have been treated that way more times than I can count over the last 17 years. Why anyone would think that we actually want to feel this way is a complete mystery. Most doctors don't see enough Chiari patients to understand it. Thankfully things are changing but too slow for anyone that needs help now's liking. Living in Nebraska makes it a little tougher.
I did some research after reading your post and I only came up with one name in Nebraska. His name is Dr William Thorell.I don't know if you have heard of him or not but..... He is the Director of the Cerebrovascular Neurosurgery for the Nebraska Medical Center and Associate Professor of Neurosurgery at the University of Nebraska Medical Center. I have a link to his bio that I will include. It specifcally mentions Chiari. You can do some more research on him too. He's got very good ratings on those Doctor rating sites like Healthgrades.
Dr.William Thorell http://www.unmc.edu/surgery/thorell_william.htm
The other options are there are Chiari centers in other states near you
Mayfield Chiari Center Cincinnati OH. http://www.mayfieldchiaricenter.com/contact.php
Wisconsin Chiari Center Milwaulkee http://www.wichiaricenter.org/ Talking animation as soon as you enter site. (Made me jump)
Chiari Care Center Dr John Oro Aurora Colorado http://chiaricare.com/
All have great/good reputations. Dr.Oro is very respected. All of them have you send your MRI's and any other information you have. They look at it and then call to make an appointment. Many people travel to all three from other states because they specialize in Chiari. You don't need a refurral.
Many of the Members have experience with them.
It may take seeing several doctors to find the right fit. You came to the right place and we are all here for you.
I hope this helps. Wendy
Thank you very much! Melissa is one of my Best Friends and if it wasn't for her I may have freaked out a long time ago! She is very resourceful. She did tell me about Dr. Thorell and there is a NS here in Grand Island but I need a referral to see him. I have seen a lot of good things about Dr. Oro as well. I don't know really what I am supposed to do...this is all very overwhelming and frustrating. I haven't told a lot of people what is going on because I want to know more before I go that route. I am thinking about telling my PCP and asking him if he will refer me and also order the MRI of my brain and spine. He is the one who told me there was something going on but he didn't know what. At least now when I go to the psychiatrist next month I can tell him that I wasn't crazy and all of them are the ones who needed to pay more attention and listen to me when I am trying to tell them of new symptoms instead of blowing me off like they always do. I wonder how many people in the world actually have CM and are being misdiagnosed with chronic migraines and whatever other bogus story they can come up with! Again thank all of you for your input and kind words!