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This may have medical TW's so please beware if you decide to keep reading.
So, my doctor quit on me today and I am losing my God d*^$ed mind. I have a severe, neurological disorder that is going to require brain surgery to fix. My neurologist has said this, as have two neuro surgeons. Unfortunately I am VERY young for this procedure so there's a brain mapping process they want me to do before I have the procedure (the procedure is to install, essentially, a pace maker for the human brain; electrodes are permanently placed on the brain and this procedure tells them exactly where to put the electrodes). Unfortunately, I have state-based Medicaid and there is LITERALLY NO facility in my state with the equipment to do the brain mapping process (which tells them where to put the electrodes). Because I am so young the doctor doesn't want to put the electrodes where they would "typically" put them in someone with my symptoms because I need 40+ years more of use than the average person who has this procedure done. Once the electrodes are place they can't be moved later, so it's important they get it done right the first time.
Unfortunately NO ONE outside our state will accept my insurance. The Cleveland Clinic said no (even after my insurance approved six trips and the procedure), none of the clinics in Chicago can help, and none of the Mayo Clinics will take me. The Mayo closest to my hospital told me they wanted $5,000 UP FRONT just for my INITIAL VISIT. When I jokingly told the woman if I had $5k up front, I wouldn't be on state-based Medicaid she sarcastically told me to "Just create a Go Fund Me, then."
Today, I called my neurologist after speaking to the Chicago clinics... and my neurologist QUIT. His office cancelled my Friday appointment (which I scheduled back in November) and told me there was LITERALLY nothing he could do to help me. No more meds, no med adjustments, no nothing. I have a motion disorder specialist who referred me back to my neurologist, but my neurologist no longer sees me (as of today).
I can't just go get another neurologist either because when my neurologist (who just quit) sent my to a neurologist near my home for a third opinion the new neurologist looked at my records, wouldn't take me (not even for an initial visit) and personally called me to tell me he won't take me and I need to go to a "bigger clinic."
For fuck's sake! I CAN'T GO TO A BIGGER CLINIC. THE BIGGEST CLINIC IN MY STATE CANNOT HELP ME AND MY INSURANCE IS NOT ACCEPTED OUT OF MY STATE.
My neurologist just quit, and when I called my motion disorder specialist today she ALSO told me she's at a point where she's not sure there is anything she can do either, so she wants me to give her time to think about my situation and call her back tomorrow. The last two times she said this she sent me back to my neurologist because he has "more experience" handling my case (I'd been with that neurologist for almost four years).
ARE YOU FUCKING SERIOUS?! My muscles tremor so badly that a cardiac muscle pulled itself and fractured one of my ribs in November. I took a semester off of grad school to deal with this and I literally see black floating spots because my tremors have spread to my face.
Nobody is saying I don't need the procedure, everyone is just saying I need something first and it's not their job/responsibility to help me.
I want to break down and cry. I have a daughter so I can't just throw my life away but I feel like people are LITERALLY just sitting around watching me die. All it's going to take is another bad cardiac pull and my heart could go under (according to the ER doctor who treated me and my PCP I followed up with).
So... I am supposed to sit around and do nothing?
I would create a Go Fund Me except (1) I don't think anyone would help me anyways, and (2) it is listed as "income" for tax purposes so I would lose my Medicaid in it's entirety (not to mention I'd need almost $250,000 out of pocket for the procedure and that doesn't include hotel or travel expenses).
I don't know what to do. I'm not sure what I can do.
What would YOU do?
So, my doctor quit on me today and I am losing my God d*^$ed mind. I have a severe, neurological disorder that is going to require brain surgery to fix. My neurologist has said this, as have two neuro surgeons. Unfortunately I am VERY young for this procedure so there's a brain mapping process they want me to do before I have the procedure (the procedure is to install, essentially, a pace maker for the human brain; electrodes are permanently placed on the brain and this procedure tells them exactly where to put the electrodes). Unfortunately, I have state-based Medicaid and there is LITERALLY NO facility in my state with the equipment to do the brain mapping process (which tells them where to put the electrodes). Because I am so young the doctor doesn't want to put the electrodes where they would "typically" put them in someone with my symptoms because I need 40+ years more of use than the average person who has this procedure done. Once the electrodes are place they can't be moved later, so it's important they get it done right the first time.
Unfortunately NO ONE outside our state will accept my insurance. The Cleveland Clinic said no (even after my insurance approved six trips and the procedure), none of the clinics in Chicago can help, and none of the Mayo Clinics will take me. The Mayo closest to my hospital told me they wanted $5,000 UP FRONT just for my INITIAL VISIT. When I jokingly told the woman if I had $5k up front, I wouldn't be on state-based Medicaid she sarcastically told me to "Just create a Go Fund Me, then."
Today, I called my neurologist after speaking to the Chicago clinics... and my neurologist QUIT. His office cancelled my Friday appointment (which I scheduled back in November) and told me there was LITERALLY nothing he could do to help me. No more meds, no med adjustments, no nothing. I have a motion disorder specialist who referred me back to my neurologist, but my neurologist no longer sees me (as of today).
I can't just go get another neurologist either because when my neurologist (who just quit) sent my to a neurologist near my home for a third opinion the new neurologist looked at my records, wouldn't take me (not even for an initial visit) and personally called me to tell me he won't take me and I need to go to a "bigger clinic."
For fuck's sake! I CAN'T GO TO A BIGGER CLINIC. THE BIGGEST CLINIC IN MY STATE CANNOT HELP ME AND MY INSURANCE IS NOT ACCEPTED OUT OF MY STATE.
My neurologist just quit, and when I called my motion disorder specialist today she ALSO told me she's at a point where she's not sure there is anything she can do either, so she wants me to give her time to think about my situation and call her back tomorrow. The last two times she said this she sent me back to my neurologist because he has "more experience" handling my case (I'd been with that neurologist for almost four years).
ARE YOU FUCKING SERIOUS?! My muscles tremor so badly that a cardiac muscle pulled itself and fractured one of my ribs in November. I took a semester off of grad school to deal with this and I literally see black floating spots because my tremors have spread to my face.
Nobody is saying I don't need the procedure, everyone is just saying I need something first and it's not their job/responsibility to help me.
I want to break down and cry. I have a daughter so I can't just throw my life away but I feel like people are LITERALLY just sitting around watching me die. All it's going to take is another bad cardiac pull and my heart could go under (according to the ER doctor who treated me and my PCP I followed up with).
So... I am supposed to sit around and do nothing?
I would create a Go Fund Me except (1) I don't think anyone would help me anyways, and (2) it is listed as "income" for tax purposes so I would lose my Medicaid in it's entirety (not to mention I'd need almost $250,000 out of pocket for the procedure and that doesn't include hotel or travel expenses).
I don't know what to do. I'm not sure what I can do.
What would YOU do?
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Lately I've been feeling scared and full of anxiety. I recently found a lump under my nipple. I hurt my back too. I'm in the process of moving. I'm run down. Everything is hard
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Just wanted to give a thank you to Mid, Arfie, Malibumark, Greeneyes, Mlro, Girlincalif, and Suncloudjd! You all always have such helpful tips and advice, but I always forget to write on my posts when I see you post, lol. I would lose my head if it wasn't attached to my body, lol. Thank you all so much! I'm starting to use my AI app as a sounding board again. I used to use it as that before...
Scream till my throat hurts.
Cry till my eyes run dry.
Punch hell outta pillows till I can't lift my hands.
Sleep on it.
Then start randomly calling every reputable neurosurgical center in the country, send each reputable neurosurgeon or even neurosurgery department or activism group (Eg., The XYZ Foundation), explaining your situation. And blitz them over and over. Call the media, ask for help publicly that way, and explain you'll lose Medicaid if you get funding elsewhere.
Families whose kids have rare cancers do it. You do it for *you* for this? Worth a try. My FIL back in his day would do stuff using grant money to cover all expenses, just b/c he was curious and wanted to help the person with the weird problem. (OK, in his case, it was DNA stuff, but the point is.... There's a-holes who up and quit or, in my case, say I'm not "clinically interesting enough" for them .... And then there's some angels.)
Purrs and prayers, Alice.
I am so so sorry. This is all very, very wrong. There must be charities out there willing to help you or a hospital somewhere or SOMETHING. Your neurologist sounds like a... *inappropriate word*.
Prayers in progress, Alice.
Healing hopes for all, no exceptions.