So the plan was to see Dr. Henderson. I have insurance,and i am obtaining medicare. But since medicare is not my primary insurance, Dr. Henderson still wants between $6600 and $10600 down payment. I thought I had it covered financially (the time needed for my husband to take off of work FMLA time to take care for me, my son who is special needs and our pets). I assumed that since I would have medicare, and Dr. H doesn't require you to pay money down when you have medicare, I wouldn't have to put money down. But since I have a primary insurance (which pays nothing out of network..so it will simply decline and then medicare will pay--same as if i only had medicare) Dr. H wants the large down payment. And I know I will not have enough money in time for the appointment.
So plan B! I would like to apply for NIH! I have also heard awesome things about NIH. And I am wondering if anyone has had their surgery at NIH and would like to share their experience?
I have a chiari malformation, disautonomia and I believe I may also have EDS.
Thanks so much for any information you would like to share!!!
Hugs!!!!
Thank you for the advice. I know you are absolutely right. After I read you reply last night, I decided that it would be best to see a geneticist and find out for sure if I have EDS. I am going to keep my appointment with Dr. H.also. I've done a lot of fundraisers for schools and non profit organizations. But I have no idea how to fund raise for myself. I'll have to look into it. Thanks so much!
I have heard that dr H allows payments on the 10,000. If I were you I would go to that appointment- get all if his opinions and expertise. Discuss the payment options with him before you decide you can’t afford it.
Jenn
I took everyones advice, and saw Dr. Henderson. Also, I don't know how it happened, and his office didn't have an explanation either, but my email says my initial appointment with Dr. H was scheduled for May 28th, but i got a call about a month ago on a saturday, saying that I had an appointment for that monday at 4. So I hurried up and got my ct scan monday morning, and went in for that mystery appointment! Turns out that I do have EDS! And now I'm thinking "what was I thinking! Of course I have EDS! The bendy fingers and knees, multiple surgeries for prolapses, hashimotos thyroiditis, mitral valve prolapse". I was in some deep denial! But thank God I went to Dr. H. I have EDS, craniocervical instability, looks like I have tethered cord (hoping not,,but spinal cord is taut. so have to rule that out), my chiari (which was called borderline by whoever read my first mri) is a 5mm which I know isn't a king kong chiari...but Dr. H showed me in the ct scan, an image where the chiari is a fat little blob blocking csf flow. No wonder my head feels like its going to blow up most of the time! I wish I could have recorded the time with Dr. H! He covered so much, it was overwhelming! And I can't remember everything. I'm wearing a collar unit I see him again in two months (had a bunch of tests to do and he has me in PT until then also). I'm very glad that I waited and was able to see Dr. Henderson. And that he's so close to where I live. I have spinal stenosis throughout the cspine. And not sure, because I didn't get a report yet, but looks kind of unhealthy. It's straight as a ruler, and kind of dark. I'm thinking maybe all thats EDS stuff too. Anyway, thanks for encouraging me to stick with DR. Henderson! I feel confident that I'm going to get great care! Hugs! God bless!
I am new in posting to this blog but I am glad you were able to see dr H, I’ve been seeing him for over 2 years and I don’t know what I’d do without him. Also give it about a week and call the office and have them email you the dedication report
Thank you Emmaline and Kathy. He seems wonderful! What is the dedication report? I'm very curious, now. :) Did you do a genetic test from a company called genelex? I received my card from genelex in the mail yesterday. Pretty interesting.