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...
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.
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.
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?
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.