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Rebekah’s Story (Chiari Malformation)

Rebekah's Story Chiari MalformationI was diagnosed with Chiari malformation when I was 18, but my story doesn’t begin there. I have had migraines since I was about 7 years old. I have been to over 50 doctors about my headaches. One of the doctors even proceeded to ask me if I needed to talk to a counselor. I started telling my mom that I wouldn’t go to the doctor’s unless I was dying. My Chiari has caused me to pass out and sometimes to seize out. I have scared my family and my friends.

I went back to the doctor in December of last year, and the next doctor proceeded to tell me I just have Chiari malformation because I am fat. Since then, I have lost over 20 pounds, and my migraines have gotten worse. I’m 19 now, and it’s been a year since I was diagnosed with Chiari. I don’t have the money or the time for surgery. I’m juggling college and Chiari now, and I feel like the more I go, the worse my headaches get. I have been getting worse over this year, and I would just like to know if that’s normal. I just need to talk to other people that have this malformation.

Rebekah
Missouri
Submitted 03/11/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Hello Rebekah I was told the same stuff but was not diagnosed til I was 35 and moved to a different state I felt like the Dr’s never cared they just wanted money and shooed me away with lortabs and was told to take Tylenol or Excedrin it became a trend to where as I was taking the Tylenol like candy I felt so bad but moved to NY in July and was diagnosed in November I have a good team of neurologist that is helping me along with eye drs I have blank moments things disappearing on me blurred vision swollen optic nerves headaches from hell so u are not by yourself I’m here to talk to you if need somebody to talk to even though I have my husband by my side I still need the talk from other people I’m beginning to become depressed have out breaks of crying I just can’t help myself I try and work but they tell you that u can’t do this or that cause it makes it worse what is a girl to do keep your head up

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