Hello!
I've been in a lot of pain on and off for 37 years. My mom says that when I was a baby I would hit my head on walls and my crib so much my head would bleed and nobody could figure out why. I assume it was pain.
Head pain was normal for me growing up. I just thought you were supposed to have a shooting pain in your head if you ran or laughed or played basketball. All weird symptoms blended together and I just assumed that was the way things were. Until it got worse, of course. I remember when I was 11 noticing that my head would hurt so bad that i had to lie on my stomach and when I looked around everything looked like a dollhouse. In my teens I was very depressed and continued having the headaches AND what I now know were migraines. I felt better in my late teens, but in my early twenties started to feel dizzy, nauseated, headaches, visual problems and pain in my hands and arms. I was diagnosed with migraines and depression.
After being on psychiatric and various migraine medication for several years, the headaches continued to get worse. In 2008 (age 28), after a horrible headache where everything sounded metallic and was unable to move my arms easily or speak, I went to a headache specialist. He ordered an MRI and found the Chiari, then ordered an MRI of the spine and found the syrinx. He said that it wasn't causing problems and that I just had migraines. He happened to be making a movie about migraines, by the way.
One day I went into the office and after the nurse took my blood pressure and checked my info, she leaned in and quietly said, "we're not helping you at all, are we?" and I told her no, they weren't. She suggested I go somewhere else for a second opinion. So I did.
I researched doctors who knew about Chiari. I found Dr. Gail Rosseau in Chicago and she told me that I should have the surgery to stop the growth of the syrinx. I had the decompression, a CFS leak, and it was quite and ordeal. I thought that was it and I would never get well. I recovered in about a year and then i felt GREAT.
I had a new life! I traveled around, went to South America, jumped out of airplanes, went horseback riding in the andes, started a business, made bunch of friends (I'd been isolated before), depression lifted, occasional migraines and neck stiffness, started making art, lived and worked above a bookstore. What a difference health made! I didn't know how sick I had actually been.
Now it's crept back up on me. The past two years I've been in denial that it's been happening again. I've completely ignored it. I can't anymore. I was so depressed last year I ended up in the hospital. I didn't tell them about the chiari or any of the symptoms. I finally started telling my doctor about the headaches last year, but said they were migraines. My psychiatrist dug the info on my chiari out of my file and said it should be in the front because it's important. My doctor said that since the migraine medicine wasn't helping the migraines I should have another MRI.
My current symptoms:
Horrible head pain
Head pain made worse by activity, laughing, bending, even talking when it's very bad
Voice cuts out when turning head side to side or up and down
Sometimes very little or no head pain
dizziness
lifting stuff over my head can cause me excruciating pain the next day or two
tingling in arms
weird burning feeling in arms like somebody is rubbing a hot potato under one arm or poking it with a stick in an annoying way
So my doctor told me that it seemed my headaches are getting steadily worse and the migraine meds aren't helping. I got an MRI and she told me to see a neurosurgeon, preferably the one who had done my last surgeries. Well, the one who was in chicago was no longer there and the one who had repaired the CSF leak didn't take my new insurance, so they just referred my to one of the two in my small town.
Yikes! So this morning it was a bad time. This neurosurgeon barely spoke to me, had no idea about any of my prior surgical reports, said they couldn't find my previous MRI which I'd had there, and asked me what I was there for.
I started to say something about the headaches but he cut me off and said "well, the chiari isn't causing your headaches!" and I didn't respond. He said that when they fix it, they fix it for good. I said "what about the syrinx?" and he said "there isn't a syrinx! those are very, very rare." he seemed annoyed "plus, I only have an MRI of the head, how could I know if there was a syrinx?" at that point I was ready to leave. I knew there was no reason to be there.
So now the hunt begins for a NS who takes my insurance in Michigan. Probably going to try the University of Michigan. I usually go there for everything else because they're great. I'd be perfectly happy at this point to work with meds/lifestyle change but I want a competent NS who knows something about chiari to at least be there.
Thanks for reading! Hope to see you around here!