I signed up for this community awhile ago, but this is my first time posting. I have Chiari I, and while I have had severe symptoms since puberty (roughly 20 years) I have only been taken seriously over the past couple of years. My last neurologist performed a spinal tap and when there was elevated pressure found I was placed on Acetazolamide. It was like a miracle drug, despite the terrible side effects, I was pain free for the first time. That lasted about a year and a half until this past winter when the symptoms came back worse than ever. Though, now I do not have health insurance that covers previously diagnosed illnesses. I went to the local public health clinic, and the general practitioner there doubled my Acetazolamide dosage to 250 MM, and things have improved, but they're not great. This past Friday, I saw a neurologist and the symptoms are severe enough he wants me to get MRIs and see a neurosurgeon within a month. If that can't happen he wants me to go to the ER.
Since I have health insurance, I am very doubtful that I will be approved for any assistance, though my insurance won't cover this. Has anyone had to deal with this un- or underinsured? Any tips? Are there any doctors or foundations that help low income patients? I don't know what to do. I'm basically on my own with this, I'm single and though my friends care they can only do so much. I feel so helpless in the face of this.
A friend's adult daughter was accepted as a charity patient at our local state university hospital. (She is just recently having severe symptoms from a car accident years ago, & will have some kind of cervical surgery.)
She had to wait until her unemployment ran out, & I'm pretty sure that there was a lot of paperwork involved.
May I ask, how long do u have this new ins?...many times a pre existing condition will be covered but u have to wait , it depends on the ins just how long.....and if u can get the Dr to give a diff dx, then it should be covered...like chiari, or disk issues, ehlers-danlos...they would have to treat u and cover.....
There r supposed to be laws now preventing u from getting coverage and care for a pre existing condition.Look into ur policy again to see just what u have.....
The other suggestion would be look into clinical trials for chiari.
So glad you have come on here to finally post. You will find a lot of direction in this community. I would look furture into the insurance, because as Selma stated they can no longer deny any pre existing illness. Wish you the best and hope the best for you
I'm sorry for the delay in responding to everyone. It's been a very crazy 6 weeks since I wrote this. I have been quite sick, and ended up actually admitted for a shunt placement by one neurosurgeon last weekend, but then the neurosurgeon doing the actual surgery decided he wanted to run more testing first. I applied for several different lines of funding, and was thankfully approved for 100% funding by Barnes Jewish Hospital here in St. Louis, as well as the free public healthcare in St. Louis County, Gateway to Better Health. I have been keeping my blog updated if anyone is interested in reading that;
I am in your shoes right now & have been trying everything to get help. So happy you got funded. There is only one surgeon in AZ with Barrows- and they don't take patients without insurance or $$. Because my kids are grown, I am not covered by Medicaid until Jan. If I last that long. At least I figured it out for my kids before it's too late. Dumb Genes! XO
Life never works out as one might think. It's been more than a year, and I haven't had surgery or seen a credible doctor who knows what they're dealing with. My experiences with Barnes Jewish Hospital at times were brutal, at all others were simply uncaring, because I was a charity case. I finally gave up and decided to tough it out. Things got worse, but I've come to live with it, and often be ok with the unknown, though of course I have bad spells.
So myeds1962, I feel your misery, and I hope/pray that things work out for you sooner or later so that you can find some relief.
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