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