In case you are wondering why my head hurts. . . I had a posterior fossa decompression (brain surgery) eight years ago for a Chiari Malformation that was caused by a posterior fossa Arachnoid Cyst. The Chiari Malformation also caused a syrinx to form from C5 to C7. Lucky girl right? Well, I was because surgery bought 4 years of life back. Four GREAT years.
Then the headaches started up again. And they got more and more frequent and pain started to effect the whole right side of my body. And I finally got an MRI. The Arachnoid Cyst has reformed and the syrinx is still present. Headaches, face pain muscle spasms and WEIRD nerve sensations.
BUT THE WORST HEADACHE OF ALL IS DEALING WITH THE INSURANCE COMPANIES. SPECIFICALLY, DISABILITY.
I don't want to be in pain anymore.
I don't ever want to go to the doctor again unless I have the flu or a sinus infection.
No more holes in my head. Can I please stop at the ones that God himself gave me plus the 2 neurosurgeons have given me?
No more disability insurance adjusters in Nebraska with no medical experience, who have never seen you and never will see you deciding how much work you can do. Who twist your doctor's words very creatively in order to stop your payments with no notice. People don't ask to get sick! People still have mortgages to pay! I'm guessing this is how people become homeless! Savings will go pretty quickly when you are fighting for disability.
Then the headaches started up again. And they got more and more frequent and pain started to effect the whole right side of my body. And I finally got an MRI. The Arachnoid Cyst has reformed and the syrinx is still present. Headaches, face pain muscle spasms and WEIRD nerve sensations.
BUT THE WORST HEADACHE OF ALL IS DEALING WITH THE INSURANCE COMPANIES. SPECIFICALLY, DISABILITY.
I don't want to be in pain anymore.
I don't ever want to go to the doctor again unless I have the flu or a sinus infection.
No more holes in my head. Can I please stop at the ones that God himself gave me plus the 2 neurosurgeons have given me?
No more disability insurance adjusters in Nebraska with no medical experience, who have never seen you and never will see you deciding how much work you can do. Who twist your doctor's words very creatively in order to stop your payments with no notice. People don't ask to get sick! People still have mortgages to pay! I'm guessing this is how people become homeless! Savings will go pretty quickly when you are fighting for disability.
Mommy my head hurts. . . and all this paperwork that I'm supposed to deal with is taking it to a new level.
1 comment:
Hi, I am a fellow Chiarian and I found your blog randomly on the internet. I'm not going to say I can completely understand what you're going through because that would be really presumptuous of me, but I think I come pretty close. I can't get a decompression surgery because my insurance company won't cover it. I have crap insurance right now because I get it through my school (I'm a grad student) and I'm unemployed. Even if I did have good insurance I don't think it would be covered because they would consider it a "pre-existing condition." So I can't work because of the constant pain in my head, the dizziness, etc etc etc so I can't even get half-decent insurance, so I can't afford to get the surgery that might make me a productive member of society again, so I'll never be well, and never be able to work, and thus, never have good insurance. It's a classic Catch-22. I can't even tell you how many times I've cried myself to sleep at night over this.
You are in my prayers. I hope that now that this new health care reform has passed there is some hope for us. If you ever need someone to talk to or bitch about insurance companies to, I'm glad to lend an ear. My email is Starmup@aol.com or you can find me on facebook under that email, or my name, Kimberly Muldoon.
Best of luck to you and God bless.
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