I have been told I most likely have Chiari or Tethered cord or both. I'm waiting for confirmation from Dr. Heffez in Wisconsin. I tried a a Neurosurgeon here in Wa State but he refused to even acknowledge that I had Chiari. All my symptoms fit, I can trace back symptoms to High School. I've been living with migraines for almost two years now and have multiple surgeries in those two years that I didn't need. Within the last month my symptoms went from somewhat tolerable to horrible. I've gone from some quality of life to none. I try not to leave my house in fear of making the migraine worse. I'm worried that things are progressing so fast that I may not be able to stop them. Traveling to Wisconsin is not "convenient" for me. I have severe anxiety and do not fly well. Plus there's the whole recovery afterwards. I am lucky to have friends and family near Wisconsin but it still is a huge inconvenience. Why isn't there more Neurosurgeons that know about this? Why do we have to wait so long to hear back? I've been told that Dr. Heffez is the best yet they don't return phone calls? I'm getting to the point where I feel this will never end and no one knows how to help me. On Thanksgiving I was trying to explain Chiari to my Mom and she told me to change the subject. I'm fed up, my kids, my husband, this is a horrible diagnosis but not knowing is even worse.
Please send me a PM(private message) regarding ur choice of Dr....I read in ur profile that u have sleep apnea...and I feel u need to get to a sleep clinic and a C-PAP machine ASAP !! do this b4 u do nething else.
Since going to WI is not convenient, u may want to go to CO instead...it may be closer to u flight time wise...
U found the right place to come and talk...our parents may times can not talk about it as they feel guilt, unfounded, but guilt non the less....and until they understand they have nothing to be guilty of will they be able to talk about it with u....
Parents and spouses want to take care of us and fix the problem...make us better, that is what moms do and that is what a husband feels his job is, but this is something they can not fix...no one can....so it is difficult for them to deal with....it takes time...and we have to remember there r many Drs that do not understand how Chiari affects us, so to expect our family to is not realistic...but what we really want is them to just say I hear u, I understand how u feel and I wish I could help...and give us a hug....
so here are a few virtual ((hugs)) for u...just know u r not alone, and we r here to offer ne support we can <3
I can feel your pain and I'm sorry that you had to have Chairi. When I first heard the word I couldn't even pronouce it let a lone understand it. We have a hard time excepting it and as Selma said our families just want it to go away. I am dealing with this now after 2 yrs post op and still having some issue I think we just want them to disappear, but we can't. So give your family time and when you find a NS who can explain things and the sisuation maybe they can join you so they can understand also. I am blessed with a wonderful family who researched ,watched videos, participated in my healing and it helped them and me to understand this is a family sisuation because it affects us and the ones who love us. As Selma said we are here for you and we understand what your going through and how your feeling. I'm happy that you found this site because it helps so much. Sending you many blesing from my heart.
For some reason it won't allow me to send you a private message? I'm new to all of this support group. I've put off learning more about the computer because my brain is fried. I keep hoping this nightmare will end. I'm also on Facebook as well, if that is easier to reach me that way?
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