The Health Care System Has Failed Me…Again

First of all I apologize for neglecting this blog for so long, and also happy Dysautonomia Awareness Month. I will make an update post soon, but that’s not what this post is for.

Last year I was diagnosed with 2 conditions called craino-cervical instability and atlanto-Ataxial instability. In laymen’s terms this describes when your top to cervical vertebrae are unstable. These conditions are common in Ehlers-Danlos Syndrome and often come with things like hydrocephalus (water on the brain), intercrainal hypertension (high spinal fluid pressure), and chiari malformation (brainstem herniation). I don’t have any of those co-morbid conditions but they are common in EDS as well.

In order to relieve symptoms from this such as neck pain, headaches/migraines, blurred vision, leg weakness, arm weakness….ect., I need to have surgery.

However, there are only around 4 surgeons in the country who specialize in this type of surgery with EDS patients and none of them are in my insurance network. My insurance has a $10,000 deductible for out of network doctors, and then after that a 50% co-insurance with a $20,000 out of pocket max.

I am disabled. I have no income. But I need this surgery. I need it badly. My insurance company is basically making me choose between my life and going into $20,000 of debt.

I can file for what’s called a gap extension which means that my insurance would cover an out of network doctor as in network because no one in network can do it. However, I have never seen an in network doctor for this surgery because I know they aren’t qualified. They may very well deny me. Then what?

I’ve already fallen into a gap where I’m under 26, have no income, dont have parental health insurance, and am ineligible for medicaid. Now this.

When will I be able to get affordable adequate healthcare in this country?

We need healthcare reform now, so that things like this dont happen to anyone. No one should have to choose between their life and crushing debt.


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