So I am really new to this whole thing, the chiari diagnosis, support groups, everything. But no one I know seems to really understand what I'm going through and a good friend of mine who's dealing with Crohns told me her support group was amazingly helpful to her emotionally as well as informatively. So I'm going to try this out
I was diagnosed with Chiari type 1 about a month ago, and saw a great (or so I thought) neurologist. Because the MRI he used for the diagnosis was several years old and he wanted to check the flow of spinal fluid he ordered a new MRI which I had done last week. I evidently reacted badly to the contrast because I had the worst headache of my life, missing 2.5 days of my kids lives and getting back to back trips to the ER where they told me it was a severe migraine and that my Chiari "just wasn't bad enough to cause this reaction." I saw the MRI today at my NS appointment and it really isn't that severe, but that's the only info I could get from my NS. When I asked how bad it is he just pointed at the screen and said "well, this is where this should be, but I've had some patients who had the tonsils pulled way down here." And then he told me he's reffering me to a neurologist for pain management because that's my biggest complaint, but until then I should make do with OTC's and if I end up back in the ER to make sure they do another MRI.
My question, therefore, is two-fold. Has anyone ever had this reaction where you want to cry because one minute they're promising to fix you, no more dizziness, tremors, breathing problems, insomnia, and less pain and then the next its like they don't believe you? My fiance is livid because we both felt that the NS has decided I'm either a wimp or making it up. The other part, does anyone know of a good NS in Montana so we could get a second opinion? Not on the Chiari because its deffinitely there, but I would be more comfortable with a doctor who actually listens to ALL of my symptoms, not just focusing on the one that landed me hooked up to an IV and bent over a trash can for 2.5 days.
Welcome. I'm also new to the forum although not new to Chiari. I was diagnosed about 5 years ago and went through a similar experience as you in the beginning. I found a great local neurosurgeon though and once he brought my family doctor up to speed, we've all 3 made a great team. You just have to be persistent. I understand exactly how you feel with the headaches (as do most people here) and all the other symptoms, they can be so hard to deal with. However with a good pain management regiment (it will take some trial and error), learning what triggers symptoms and support of your family, it is manageable. I opted out of surgery and control symptoms with meds, rest, and early retirement (I had that option). If I can make a suggestion, keep a journal and keep track of what you do, what seems to trigger symptoms, what helps alleviate them, etc. Remember, be patient, many doctors still don't understand Chiari. But be firm with them that these symptoms are real and you need their help. And educate yourself. Plus, come here and talk to the veterans. I haven't talked much but I've read a lot and there is so much helpful information.
I'm so sorry you find yourself in the Chiari world, but you're in the right place to find help and hopefully some answers.
Hi! I am also new here and newly diagnosed. I am sorry to hear that you are having such a hard time! I wish I had some good suggestions for you. All I can do is let you know that you are NOT alone! Keep us up to date!
Thank you all. I have been keeping a log of my symptoms for a month now, ever since I first heard that I had Chiari. I do the same thing for my youngest son's ADHD and it helps a great deal in avoiding his triggers. I called Montana Neurological Associates this morning and waas told they need a referal from my primary caredoctor so I'm waiting to hear back from his office and dhopefully get the ball rolling again. After spending the weekend playing with my little boy and being spoiled by my over-protective fiance I'm a lot calmer. There are so mmany questions that I would love to have answered in more detail, so we've got our fingers crossed that we'll find someone who is willing to take the time to do so.
You definitely need to get another opinion. I can’t help with the actual referral because I’m in Canada but I went though the same thing. My first NS said it was something I needed to live with which was stupid because my symptoms were horrible. My herniation was 22mm and I went back to my doc who sent me to the head of neurosurgery at Sunnybrook who was AWESOME. He saw me quickly and scheduled the surgery within a month. Moral of the story: get another opinion and fight for your health.