So I'm relieved the day is finally here. I'm finally getting to meet a Chiari speciliast!
I'm so scared though too. The last post I described three different diagnosis with the final one saying I don't even have Chiari. The last image doesn't even show any herniation. How is that possible? Could my brain have lifted itself?
Meanwhile, the headaches persist, my right hand has become more painful and weaker and the resentment between me and my husband has grown. He's so upset that I keep having to call in to work on the bad days and knowing what the last MRI says, thinks that I'm...I don't know. He doesn't think i'm lying but he doesn't seem to fully believe I hurt as bad as I do.
My fear is that the last MRI stated no evidence of Chiari, & I'm afraid this doctor is going to confirm that it's, in fact, NOT Chiari....and then what? I was so relieved to find out I had a REASON for the past 20 years of painful debilitating migraines.Reading some of your posts about what you're going through, I feel selfish saying that I WANT to have Chiari. I know I could have it A LOT worse than I do. I'm by no means trying to take away from anyone else's issues. I'm just really freaked out that if it isn't Chiari, then what the heck is it??
My appointment is at 1pm CST in Mobile, AL. I'll definitely update y'all and let ya know what he said. Wish me luck.
So I just got back a little while ago. It was just as I feared. I DO have a chiari malformation however, it isn't severe enough for him to do anything with AND..he said because my migraines are temporal, they they are NOT related to chiari at all. I was kind of shellshocked by the news and didn't even bother to ask him about my other symptoms I told him about--and he didn't offer any suggestions about them either. My friend was with me because my husband didn't see it as important enough I guess to be there with me. He's known for 2 months about the appointment but never once thought to say "hey, maybe I should be there" so I didn't ask him.
Anyway, I left there and it was like I woke up as soon as I walked out and got in my car...Wait a minute!! Why is my hand getting weak and painful! What about my shoulder pain!? What about my vertigo and nausea? Are THESE related to the chiari even if the migraines aren't? Really bothers me now that I didn't think about any of that at the time.
What this doctor DID do, and by the way, he was VERY nice man and very knowledgeable and compassionate, was refer me to a headache specialist up in UAB (Univ of AL at Birmingham) Dr. Rothrock. Man has written a lot of books and stuff he said and has researched a lot about migraines and their causes.The problem is, for now, I'm STILL in pain and nauseous. I'm still dizzy, my hand still hurts and is weak. And I STILL do not have any relief in sight.
(sigh)
Oh well. He told me to keep checking on my Chiari and that I do need to monitor it and if I get any more symptoms, to check back with him. Ok man..Ok.
It's very disheartening when you know there is a problem but yet the medics don't think it's severe enough to have surgery, I was in a similar situation last week. When I went in to see the NS I was almost certain there was a CSF blockage but when he told me there wasn't it completely threw me & again I had questions I had wanted to ask (I even had them written down!) but when he told me I felt what's the point but was so upset when I got home. Like you I have constant headaches & arm pain & weakness & I'm none the wiser. I hope you decide to go to the headaches specialist & that it goes well, I don't think anyone understands how having contact headaches can have such a huge impact on everyday living. Best of luck
Although very stressful, it should also be a relief to know that you have a diagnosis....finally. Now, you need answers! I would recommend that you WRITE down every question as soon as you think of it. You can fax it, email it, or make another appointment to see the doctor. Either way, stay vigilant in your search for more information. The more knowledgeable you are, the better. Even if you like this doctor, seeking out another opinion is not always wrong. It can take some time to get the right treatment and get some relief.
Get your husband involved! You NEED a support system. Most people do not understand what you are experiencing. He is no different. As difficult as it is for you to face, those who love you may have a harder time accepting that you aren't "perfect." Try to be patient and educate him. My husband is a nurse and he just forgets that I have a CM1. He is accustomed to me being active, hyper, and a control freak. When I could no longer do all the things I normally did, it upset him. It wasn't that he didn't believe me or feel that it wasn't important, it was that he did not know what to do to make it better. He withdrew from the situation, although it sometimes felt like I was facing it alone. Communication has been and continues to be a big part of us fighting this CM together.
Good luck and know that someone is always here to listen and that you are never truly alone.
-M