Chiari Online Support Group

Veteran with Chiari Malformation Type 1 Ins. Questions

Does anyone have any information/experience on Veterans being seen at the Mayo Clinic for CM1? I have Medicare and the VA usually covers extra charges. However, I’m told I would still need supplemental insurance in order to be seen at Mayo Clinic.

I was dx in 2012 after symptoms for 11 years that slowly increased over time. By 20120, I was no longer able to work. I was dx with PTSD after returning from overseas, which ,I believe, made my complaints less “heard” by physicians and led to an unreasonable amount of time to get an actual diagnosis of physical symptoms, not to mention aggravate my trust issues associated with PTSD. I had a 15mm CM, reduced to 13mm with partial decompression. I had a partial craniotomy and partial laminectomy of C-1. While I no longer have as severe or frequent headaches (CM characteristic: sudden shard pains in the back of the head/upper neck.) I continue to have every other symptom the same or worse. Tinnitus, fullness in the ears, pressure at the base of the skull, headaches reaching up, around the top of my skull and behind the eyes, neck muscle spasms, chest and shoulder pain, (especially the clavicles and behind them) numbness and tingling in arms and hands with intermittent lost of grip, vision changes when bp changes and changing position suddenly, hearing csf fluid in the back of the neck/head etc. The VA in Gainesville, FL has very little knowledge of CM, and I am really tired of not being taken seriously when it comes to how the symptoms affect me and my life. I am trying my best to learn more about it, and how to best manage my physical and mental well-being as a CM patient as well as someone with PTSD, PCOS, and possibly Ehlers Danlos Syndrome (connective tissue disorder that can result in CM type 1 due to hypermobility of the joints.) I know more than my current neurologist when it comes to CM and I still have many questions they can’t answer. They didn’t know that Chiari patients can experience mental fogginess due to cognitive and memory issues. They tried telling me that it had nothing to do with CM. I want to be seen by Mayo Clinic in Jacksonville, but am really not understanding the insurance needs or how other Veterans have been seen there without supplemental insurance. If I need the supplemental insurance, that’s not a problem… but I’m not sure if I need it or not and the VA has zero answers, or is even remotely helpful to find answers about insurance, concerning my request to be seen elsewhere. I currently have Medicare A&B along with VA benefits. Help Pls.

It literally took an act of congress for me to be seen outside the VA, my State does not have a Chiari specialist so my wife drives me 8 hrs to Pittsburg Pa to see a neurosurgeon at UPMC! My first move would be calling the congress person of your state and calling the Mayo Clinic’s billing department and see if they will accept a non va care referral or veterans choice referral!

Thanks. They don’t currently take Veteran’s Choice. At least that is what I have been told. I will get on the phone again tomorrow and see what comes up. Thanks for your reply.

No problem, which Mayo Clinic were you looking into going to? Also the Congress person maybe your best bet but your OEF/ OIF case worker maybe to help get you a neurosurgeon outside the VA!

Hello. I’m a Vet also, and I work for the VA. First of all, do you have any service connection at all? If you get your care at the VA, and are service connected at 50% or more, you can be sent out. Find out who your Hospital has provider agreements with. Then, if the clinic you are trying to see doesn’t have an agreement, see if the are willing to. It happens. My Choice network is through Triwest. They have set me up to go to Duke and it’s out of our area.

I was actually able to see a doctor that I am rather happy with. And,
perhaps, my anxiety gets the better of me at times. Thank You.

I am just seeing this. I am 100% for PTSD. I’ve come to believe that the current medical system is severely broken. I was finally diagnosed with Ehlers Danlos Syndrome and the VA (2 years later) will not put it in my chart as a diagnosis. Very little is known about the condition and most places seem to have little knowledge of it or how to manage comorbidities. I go to the VA for my annual and whatever else they order at the time and that’s it. My nueroophthalmologist is knowledgeable. That’s a plus. Also, with the new changes… I might consider trying to find psych and internal medicine outside the VA. My annual is in October.

Thank you.