Possibly Time for Surgery

[wandernwoman]

Hello Everyone,

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.

[wandernwoman]

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.

[myeds1962]

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

[selmaS]

   Thanks for the update, and sending healing MoJo and prayers ur way for a smooth recovery and that this will do the trick for better health for u.

I also understand ur birdcage analogy u posted on ur blog....all so true, just know u r not alone in how u feel and I hope u keep us posted on ur progress: )

[Viva001]

Sorry for your surgery, but so glad that you got the funding you needed!

[wandernwoman]

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;

http://daniedaniedanie.blogspot.com

[linnielou232]

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
Linda :)

[selmaS]

  Hi and welcome to the Chiari forum.

I am glad u r now posting : )

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.

[Viva001]

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.

Best of luck to you.