Hello all,.
I’ve been symptomatic from Chiari 1 Malformation for 6 years & have multiple surgeries done all on. Cervical Spine C2- 7 fusion with hardware
I was told I’d be able to have my Chiari fixed once I had Medicaid, well guess what?
I’ve got Medicaid now and there aren’t any specialist in my state.
Does anyone know what steps I could go through to see a specialist?
After your accented for Medicaid,your eligible for Medicare 2 years later,then you can go out if state.
This seems so unfair, many people with other specialist needs go out of state & use Medicaid, I just can’t seem to learn what steps they follow to actually have a chance to see a Chiari Specialist.
Thanks for any ideas
I’m sorry I’m bedbound and use a mobile device to post & can’t edit typos,please correct title.
Medicaid is a state-funded health care plan, whereas Medicare is a national program. Therefore, your question is state dependent. Federal law requires Medicaid patients to have "equal access" to care. That is interpreted in many ways, leading to lawsuits in several states(including Florida, the state in which I practice).
I would suggest you get a case coordinator through Medicaid. You will have an advocate that way. You will need to see someone on the Medicaid panel for your state(in Florida, with adult Medicaid, that usually means travelling a few hundred miles to find a provider). If you come educated, and can convince the provider that you need someone with greater expertise, a letter from a Medicaid provider recommending treatment outside the state puts great pressure on the care coordinator to help get you out of state.
A first start may be to go back to the surgeon who fused you in the first place. If not possible, the above path may be the only other choice.
By the way, the Medicaid to Medicare route you mention may be true in your state but I've never heard of it(patients stay on Medicaid until they turn 65 in Florida most of the time).
I hope these thoughts give you a place to start.
Dr. Trumble, thanks for your ideas and help.
I’m on disability,with Medicaid
Medicare ,starts 2 years from disability starts in my state.
My state has tons of ‘baseskull’ surgeon’s/ neurosurgeon…etc.
The sad fact is that most of these Neurosurgeon rarely if ever actually do Chiari decompression surgery.
I’ve called Medicaid and was given a list of Neurosurgeon.
Here is the sad truth, there are Chiari specialist and surgeons that focuses the majority of their practice on Chiari 1 Malformation & these surgeons always have Chiari 1 Malformation listed under their ‘treated condition’ list from the hospitals they work in or for.
None of these Surgeons exist in my State.Granted I’m certain any Medicaid official could ‘argue’ that these basic Neurosurgeon are ‘specialist’,when in reality they aren’t.
Because of this lack of Chiari specialist in my State I am afraid I am forced to await Medicare to ‘take over’ so that I maybe then can finally see a specialist and finally be treated for Chiari,other than everything under the sun without the serious concideration of my Chiari and the true need for surgery.
This to me seems so unfair that I’m left to suffer ,simply because my state doesn’t have any specialist in the field of my illness.
Please if anyone has any information that could allow me to be treated by a Chiari Specialist, it would be a enormous blessing to me.
I want to regain the ability to work not learn more and more coping skills to keep my sanity.
Thanks to everyone for the help.