Help Anyone? The Chiati Institute...Insurance!!

[Guest guest]

Okay... this has probably been REALLY long time coming and I have resisted

simply because I LOVE the neurosurgeon that both my daughter had surgery with

and I had two surgeries with but, well she's no longer an obstacle. I've known

for really a very long time that I have simply gotten past her knowledge of

chiari but still I resisted because she is just such a caring fantastic DR.

Well, I called several weeks ago,my health is a real mess and I wanted to se her

or at least see if she wanted to get a new set of MRIs. I waited patiently to

hear back, I know she deals in life or death and it's easy to put cases like me

aside so when I didn't hear back I finally called again today. I was totally

devastated when was told that wen she recently changed practices she also

decided she was no longer going to treat chiari patients. I cried pretty hard,

it's very difficult to lose the DR you literally trusted TWICE with your life.

She said that she is just too, I Don't know, not upset, but she's had too many

cases like mine where they are at first seemingly successful and a year later or

whenever the patient gets the symptoms back. She said she just cares too much

to put her patients through all that to have them back where they started or

worse... like where I am. Her assistant promised to get the names of some DRs

from her that she would recommend and then we hung up with me still crying and

her still apologizing.

So I spent the afternoon in thought and MUCH pain... my newest symptom is some

VERY intense leg pain in both legs pretty much all day long. Anyone else deal

with tat or have any idea as to WHY I would have it? Could it be chiari

related? Anyhow, after thinking I realized that I don't really care who she

recommends, just because I trust her it doesn't mean I would trust a DR just

because she does. I'm tired, I'm on edge and ask myself all the time what the

point even is of going on if I have to live in pain like this for the rest of my

life. I CANNOT phathom that! Oh and this is pain that exist despite the fact

that I have AWESOME pain management DRs and I'm on heavy nargotics... I wear a

75mcg fentanyl patch that gets changed every other day, I'm on percoset which is

for breakthrough pain but I LIVE in breakthrough pain so each month I take the

entire 120 I am prescribed. I am also on liquid oxycodone/hydrochloride oral

solution for severe pain, I always need all of that as well, I also ave valium,

neuontin and phenergan. All this medicine and yet I hurt as if I didn't take

any!

SOOOOO tonight I finally came to the conclusion that at least need to see if

there is any way I can make the Chiari Institute happen for me. This is where I

need any help I can get. First, how do you even get them interested in seeing

you? Then comes the bigger issues... I know they don't formally accept

insurance but I think they will accept what your insurance will pay if they will

pay anything. How in the world does THAT work? If they don't take insurance

they would obviously be out of network so how do you get your insurance to cover

it? Has anyone with Aetna HMO successfully been able to go there with Aetna

paying? I know you need to pay out of pocket for the first visit up front, how

much is that?

If there is just any random information that ANYONE can offer you have no idea

how desperate I am for it. I feel like I am clinging to the end of a rapidly

fraying rope at this point and I need help! I am crying most nights and man

days in pain and frustration because I simply need a break! Can anyone help me?

I hope no one is offended but I'm going to cross post this to both groups I

belong to because I NEED help and I don't care where it comes from.

Thanks and take care all

Tina 43 yrs

decompressed May 2005

outside spinal leak, re hospitalized 6 das after going home with a spinal drain

to stop the leak

Rejection of the bovine patch placed on my dura resulting in chemical meningitis

Dec 2005 2nd surgery to revisit the site of the first surgery, remove bovine and

replace it with material obtained from high up under my skull Also removal of

adhesions

Almost six glorious nearly symptom free months before everything came crashing

back after a tooth extraction

I now feel like I live in hell

Daughter was decompressed Dec 23 2005 at the age of 16. She is currently

23, married two years and besides some occasional headaches she is doing well

(there IS hope!)