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Avatar universal

One specialist in my state and doesn't accept insurance

So I'm not too certain where to go next.  There is ONE chiari specialist in my state (oklahoma).  I have contacted his office and discovered that they do not accept my insurance.  There are other Neuros in my state that "treat" Chiari, but I am just gunshy with them and my insurance.  I can't go out of network and I can't go out of state.  I feel like I am so screwed.  I can't afford to keep seeing these guys who keep recommending surgery but I don't feel comfortable with.  I am a teacher so I can't switch insurance right now. I just don't know what else to do.  I need someone that sees more than one Chiari patient a year.
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Avatar universal
Did the neuro tell you WHY they're recommending surgery now?  I feel like it's important to evaluate what you need medically vs. what your insurance company will pay for.  The financial side is our responsibility and shouldn't be a factor in what doctors prescribe, but it seems like that isn't always the case anymore.  Educate yourself on what the surgery entails.  The head wasn't meant to be opened up, and doctors have a very difficult time sealing it back up properly.  Read up on the experimentation they're doing on Cavalier King Charles Spaniels, as 90+% of them have Chiari-like malformations of the skull due to narrow bloodlines (inbreeding).  I feel like I will be fortunate if I can hold off on the surgery as long as possible to allow for more advances in medical science.  For me, as long as possible means until I have a condition like CSF pooling in my spine which will cause it to rot from the inside out.  Everyone's threshhold is different, of course.

Something else that I learned from the posts here is the surprise many faced when learning that after surgery, the NS doesn't want to see you anymore, unless of course you have leaks.  If the surgery doesn't help or makes things worse, there's not much else (if anything) to be done.

I don't mean to sound negative.  Chiari is a serious problem, yet I'm not on any prescription medication.  That's probably part of the problem.  Maybe there would be more money for research if the big drug companies could have a drug to promote for it.  Just food for thought...
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620923 tn?1452915648
COMMUNITY LEADER

   Do  make  sure  they  do  a CINE MRI (CSF  flow  study)  and testing  for related  conditions,,....

  Syringomyelia,ICP,POTS,sleep apnea,tethered cord,Ehlers-Danlos  and disk  issues.....

  I  am glad  to  hear  you   found  a way...it  may be  frustrating  dealing  with  all the paperwork....but  in the end  will  get  you  the care you  need,,,,so  well  worth  it....keep us  posted.
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Avatar universal
It's wierd with my insurance: there is no out of network coverage.  I did talk to them yesterday and found out that I CAN get coverage with this specialist as long as I go through the proper bureacratic paperwork channels.  I sense a little progress on that end.  Next step : talking to my PCP for the submission of the paperwork.

The screwed up history with my case: diagnosed 10 years ago at Wake Forest told by Neuro that Chiari was there but it was nothing, then in same sentence told me he wanted to do exploratory surgery on my pituitary gland because of a lesion.  Scared us half to death, forgot about Chirai, like seriously FORGOT.  Last year had symptoms worsening exponentially so got an MRI, was recorded as normal with an exception: stated something about the foremen magnum and basilar tonsil, so started researching and realized what I had forgotten for ten years: chiari.  Saw two Neuros: both said surgery was needed soon, but not today.  Neither were intending on being the surgeon though.

Now I am just in the crappy and painful stage of knowing something is needed, but need another opinion from someone more specialized.  Friday is when my PCP is calling me...so I'm trying to be patient.
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620923 tn?1452915648
COMMUNITY LEADER

Hi  and  welcome  to  the  Chiari  forum,

  Most Chiari specialists  do not  work with  INS....but  they  do work with you  to work out an affordable  way to  pay  and  have much of  the bill covered  by  your  INS....talk with the one  specialist and  ask  for  their finance  office....

I  went  out  of  state  and  had  more  covered  by  my  INS then  what  I  was  expected  to  pay.....so look into it  for more  details.

You  can also appeal any  OFN  bills  to your  INS company  so  you get  the best  care and best  coverage with the INS...so  talk to  them  as  well  as  to  your options.

The  Drs  that offer surgery,  have  they  ruled  out  ALL  related  conditions and done  a CINE MRI and found  a CSF  obstruction?
Helpful - 0
246139 tn?1424371973
Hi. Sorry you are having insurance issues. I am hoping I don't run into this.

I am going out of state and out of network for treatment as I have NO specialists in my state. The out of network expenses are 60% payment where my in network was 80%. I am hoping that since I have no specialist in state that the insurance will honor their statement that they would pay the full coverage. I'm actually still waiting to hear from them, but I think it will be OK.

When you say you can not go out of network - is that because there are no payments issued out of network, or because you don't want to, or can't afford the out of network portion you are responsible for?

I know this is frustrating and I hope you can find answers soon. The insurance part -  and then the transportation part for and after surgery are the issues that are bothering me the most right now. LOL.
Helpful - 0
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