medical insurance, living in 2 states & having serious issue

[Chopper 17,314]

Any health care insurance experts here?

I have an individual policy - not purchased on the exchange - but fully ACA compliant. I live in NM but have a business in Texas. But my insurance is based in NM and providers all NM except for some in El Paso.

Long story but after months of going to various medical specialists, trying to figure out why I've been having really strong internal vibrations from head to toe for hours on end, and getting headaches and dizzy, a MRI found a mass in my cavernous sinus that's displacing my carotid artery and causing nerve issues. I don't think it's cancer because this has been going on for awhile and I don't have symptoms associated with it such as loss of appetite or feeling weak.

My neurologist (he's my second neuro after going to him for a 2nd opinion...the 1st neuro did a half-assed job and didn't find the mass) says that the mass is in a very difficult to reach area, and even a biopsy will be quite risky, let alone if the mass has to be removed. He says he knows of only 3 surgeons in the US he'd want to do the procedure and he'd try to get the insurance company to cover it, even though the surgeons are either in NYC or Seattle and thus out of network.

I'm wondering about my options if the neurologist is unsuccessful in getting my current insurance company to cover whatever procedure I end up needing. If I rent a place in WA to purchase insurance based on that address, insurance which has the Seattle surgeon in it, or perhaps find a qualified surgeon at MD Anderson and do the same thing in Texas, what would likely happen given that I have a pre-existing condition? Is there still a hitch with pre-existing conditions under the ACA - in other words could/would a new insurance company refuse to cover the necessary medical care based on the pre-existing condition?

 

Edited January 2, 2020 by Chopper
clarity

[fattyflattie 4,638]

I can't help, but hope you get better.  Sorry to hear.

[Nice Guy Eddie 13,530]

Take this as general advice but it's doubtful that only 3 surgeons in the country expertly perform this procedure.  There are many excellent ENT surgeons in every major city. Don't be afraid to talk to other local neuros to see if they know of other surgeon referrals. It's a great question when seeking a second opinion.  "Have you had other patients with similar conditions and what did they do?"

You can also try to talk with the insurance company and the hospital/surgeon's billing office to better understand options.  You might also have to accept some large out-of-pocket expenses but getting yourself healthy is the best use of any money you have in the bank.

Lastly, you or someone close to you has to take charge about finding out your options. Your neuro or pcp may only do so much as they don't know the ends and outs of your insurance or financial position. They can advise and assist but they most likely will only spend so much time on this. Your health is your responsibility.

With all that said, I'm sorry to hear about this. Please continue to post whatever you feel comfortable posting. There must be some on here that have more info on this subject. If you keep this thread active, there is a stronger chance you will get more advice.

[Spur08 382]

That 3 surgeons in the US thing is bogus. Does the area have neural and vascular structures around it that make the procedure more difficult and a bit more risky? Yes. Is it so risky and difficult that only 3 people know how or are willing to do it? Absolutely not. Every medical school has someone that has done or does this surgery. There are also a small subset of guys in private practice in DFW who I would trust to perform the surgery.

 

My company doesn't really have a market in NM otherwise I would try and get you a rec.

 

I just saw your biz is located in TX. If you need recs here (DFW, ATX, Houston, San Antonio) I can provide some.

 

 

[Chopper 17,314]

A neurosurgeon I saw today said there's nobody qualified in New Mexico to do the procedure and that my insurance company here would have little choice but to approve an out of network surgery. It's not certain yet that this surgery is what I'll need so I may have jumped the gun in asking the question. Apparently the issue is that cutting into the cavernous sinus brings a high risk of bleeding out on the operating table. Also they've got to move part of the brain just to get to it. Yesterday I was thinking/hoping surgery would be the best option but now it seems like the last option. Anyway they did send my records to a group at the Mayo Clinic so perhaps that'll be helpful. Cancer doc I saw today said she's not seen a presentation similar to what I have in her 20 years of practice. But she was able to get some tests/scans approved that my current insurer had been denying so I did make some progress today.

Thank you everyone for the well wishes. 

Edited January 3, 2020 by Chopper

[Dbeasy 15,139]

Mayo clinic is usually an extremely good option for surgical procedures and insurance often covers that in network. You have to get up there and pay for the stay outside the hospital of course.

[deadshank 24,653]

One helluva way to start the new year.  I got nothing but I wish you well and hope you get the care you need. Dang, dude.  

[Bevo 13,606]

Just curious what the plan is, if they plan on irradiating and getting it down to a manageable size before operating or medicating. Proton therapy would be nice in this instance, but it is so close to so many critical structures.

And btw, healthcare sucks in New Mexico.

[Chopper 17,314]

6 hours ago, Bevo said:

Just curious what the plan is, if they plan on irradiating and getting it down to a manageable size before operating or medicating. Proton therapy would be nice in this instance, but it is so close to so many critical structures.

And btw, healthcare sucks in New Mexico.

Welp...so I have a PET scan scheduled for next week to see if there are any other masses that could be biopsied to give a clue about the one in my sinus. So that's Step 1. The insurance company had previously vetoed a PET scan when requested by the neurologist but the oncologist had the pull to get it approved. Also they took some blood last week and I will get results later this week to see if there are any signs of cancer. I may have written this already but oncologist said the mass could be a strange presentation of something very common and not much to worry about, or it could be a strange presentation and location for cancer. So there's still a wide range of possibilities. Gamma knife radiation is probably an option before undergoing major surgery if it is cancer but that's TBD.

This will probably strike some as nonsense but I have an acupuncturist and Eastern medicine specialist I've seen of late. She doesn't believe it's cancer and is whipping up an herbal concoction that I'm supposed to take for 3 months or so. Not a large amount of money and no reason to not try it. I've been doing the "throw everything at the wall" approach anyway.

My health care experience has indeed sucked. I think my current neurologist (I'm on my second) and the new oncologist are both competent and know the limit of their abilities, so I'm a little encouraged. Also the oncologist sent my records to some special team at the Mayo Clinic to see if they have anything to add. But it's been hugely frustrating trying to figure out what's causing my symptoms. In the past 6 months or so I've seen 3 internists, gone to the ER, seen a gastroenterologist, had an endoscopy, had a full blood panel done by a functional med PhD, gone to a sleep doctor, been through 2 cardiologists, seen an allergy doctor, an ENT specialist, had a sonogram of the carotid and a cardiac stress test, had a MRI of chest and neck, an EEG, a CT scan of the sinus (which didn't show anything), and gone off or substituted for the various blood and cholesterol meds I'm on already (had a myocardial infarction previously) to see if I was experiencing side effects from the meds. It wasn't until the MRI with contrast of the skull on Friday, Dec 13 that the apparent issue was found. I saw a neurosurgeon on Friday too - he said to wait 3 months to get another MRI and see if the mass has grown before deciding on the next step. Will be interesting to see if Mayo agrees with him or not.

Some docs were openly skeptical and dismissive of my symptoms - specifically a neurologist and a cardiologist. Also it would have been great if I had found a competent internist who could have helped guide me through the various maze of specialists that I needed to see. Trying to figure out what docs to see and getting on their schedule has been a big part of my challenge. But the few internist MD's in Santa Fe are extremely busy and have a long wait list if indeed they're seeing new patients at all. Mostly it's nurse practitioners and osteopaths who have availability.

The oncologist said she hasn't seen anything like this in 20 years of practice and that made me feel a little better about the struggle I've had trying to figure out what's going on. I've wondered at times if I was going crazy.

 

Edited January 4, 2020 by Chopper

[Chopper 17,314]

dp

Edited January 4, 2020 by Chopper

[Bevo 13,606]

The only advice I can give you is that my dad is a retired surgeon and teaches at Baylor in his spare time. At times he has had various simple stuff done in New Mexico, but for anything serious, he goes back to Houston. He doesn't think much of the New Mexico doctors he has visited. I've gone to one ENT in Santa Fe and was totally unimpressed as well. Bottom line is that for serious issues, you should look at getting the work done in Houston or Dallas or better yet get your ass to the Mayo.

[Chopper 17,314]

11 minutes ago, Bevo said:

or better yet get your ass to the Mayo.

Yeah I think you're right, and the other comments above to not hesitate to spend some money going out of state trying to figure this out. I'm going to start that process while I'm waiting to see whatever test results I get this week.

Edited January 4, 2020 by Chopper

[torre 1,286]

1 hour ago, Chopper said:

 

This will probably strike some as nonsense but I have an acupuncturist and Eastern medicine specialist I've seen of late.  She doesn't believe it's cancer and is whipping up an herbal .concoction that I'm supposed to take for 3 months or so.

 

 

You know the rules,   pix !      😉

 

Srsly,  best wishes that your good health is completely restored.

[Bevo 13,606]

BTW, I forgot to ask. Have you seen any changes in your voice, sight, or ability to smell?

[Chopper 17,314]

15 hours ago, torre said:

You know the rules,   pix !      😉

 

Srsly,  best wishes that your good health is completely restored.

Thank you. I don't think she'd mind a little promotion. The woman is a badass.

 

3 hours ago, Bevo said:

BTW, I forgot to ask. Have you seen any changes in your voice, sight, or ability to smell?

No changes like that at all. Had my eyes checked recently at optometrist and the neurologist checked my field of vision. No change in appetite, etc.

One of the oddest things is that my symptoms which come and go anyway (vibrations, dizziness, headaches, low energy) disappeared at sea level - was a block from the beach in Carmel for part of the holidays. Driving (cause I took my dog) back to Santa Fe, by the time we stopped in Flagstaff I could feel it again.

I may be heading out there in February to look at real estate...either there or WA or OR. CA would obviously be the worst choice of the three for taxes and cost of living, but in terms of living near the ocean and still having access good doctors and hospitals I'm not sure exactly where else to look.

Edited January 5, 2020 by Chopper

[Bevo 13,606]

1 hour ago, Chopper said:

Thank you. I don't think she'd mind a little promotion. The woman is a badass.

 

No changes like that at all. Had my eyes checked recently at optometrist and the neurologist checked my field of vision. No change in appetite, etc.

One of the oddest things is that my symptoms which come and go anyway (vibrations, dizziness, headaches, low energy) disappeared at sea level - was a block from the beach in Carmel for part of the holidays. Driving (cause I took my dog) back to Santa Fe, by the time we stopped in Flagstaff I could feel it again.

I may be heading out there in February to look at real estate...either there or WA or OR. CA would obviously be the worst choice of the three for taxes and cost of living, but in terms of living near the ocean and still having access good doctors and hospitals I'm not sure exactly where else to look.

Washington and Carmel may be something alike in that they are by the water but too cold and foggy to enter the water. I lived in Capitola (by Santa Cruz) and it gets less fog than Carmel but still there is plenty of fog. Better weather can be had in Santa Barbara and prices are no higher than Carmel or Capitola. Capitola has developed a lot of traffic because people commute to the Bay Area from there. And none of those places are close to good hospitals. For that Seattle would be a better option or Los Gatos/Saratoga which are close to Stanford but 25 minutes from the beach (without traffic).

Good that the symptoms are intermittent and you don't have other symptoms. I am sure that you have googled to see that essential tremors, brain tumors, MS and Parkinsons are the most common things associated with internal vibrations. With that being said, just make sure the doctors are sure that it is a growth in the cav. sinus that is causing the problem. Getting exploratory work done in New Mexico is a bad idea especially given that you have enough money to buy West Coast coastal property.

[Chopper 17,314]

6 minutes ago, Bevo said:

Getting exploratory work done in New Mexico is a bad idea especially given that you have enough money to buy West Coast coastal property.

Thanks for the background. The fucked thing about Carmel/Pacific Grove/Monterey I've discovered is health insurance prices in Monterey County are 2x that in neighboring counties. Not sure why that is - only 2 companies offer private insurance there while 6 or more insureres are providers in neighboring counties. So Capitola or Aptos areas are on the list of places to look at but I really like the fog and cold on the Monterey Peninsula more than the sunny areas. Between the price of housing and added costs for insurance and taxes, it would be a challenge to sustain.

Until I saw the brain mri results a couple weeks ago I was hoping I was just having some weird allergic/elevation reaction because we moved here not too long ago and the symptoms appeared not too long afterward, and have became worse over time. Also there's been strange possible coincidences like they've disappeared when a rain storm rolled in for a couple days.

[Gil Bang 26,061]

No changes like that at all. Had my eyes checked recently at optometrist and the neurologist checked my field of vision. No change in appetite, etc.
One of the oddest things is that my symptoms which come and go anyway (vibrations, dizziness, headaches, low energy) disappeared at sea level - was a block from the beach in Carmel for part of the holidays. Driving (cause I took my dog) back to Santa Fe, by the time we stopped in Flagstaff I could feel it again.
I may be heading out there in February to look at real estate...either there or WA or OR. CA would obviously be the worst choice of the three for taxes and cost of living, but in terms of living near the ocean and still having access good doctors and hospitals I'm not sure exactly where else to look.

I’m a realtor in San Diego. Let me know if I can help you.

[XYZ 2,154]

America, home of the best healthcare system that everyone hates.

[NeverMarryAStripper 21,989]

It’s only great if you have good insurance or a lot of money

[Incredulity 11,684]

19 hours ago, NeverMarryAStripper said:

It’s only great if you have good insurance or a lot of money

and are willing to work like a mule fighting the layers of bureaucratic bullshit.

[Chopper 17,314]

Going to U of Colorado neurosciences department next week. Apparently the portion of their faculty that practices medically is among the top tier in the nation from what I'm told. It is really strange the way the symptoms I've experienced - dizziness, internal vibrations that last for hours and days - have seemed to lessened or even disappeared for the few days I've been at sea level over the past year, even before I knew about the brain mass. The mass is real though so my feeling is it changes based on elevation, humidity, barometric pressure, etc. UC appears to have done some leading research on at least some of these issues but I think the first step is ruling out a malignancy if possible. Also being in New Mexico is not the greatest locale if I need emergency brain surgery. So going to consider establishing residency and obtaining health insurance close to UC's facility in Aurora. Although maybe the doctor will have some better ideas.

Edited January 24, 2020 by Chopper

[Message Board User 12,396]

10 hours ago, Chopper said:

Going to U of Colorado neurosciences department next week. Apparently the portion of their faculty that practices medically is among the top tier in the nation from what I'm told. It is really strange the way the symptoms I've experienced - dizziness, internal vibrations that last for hours and days - have seemed to lessened or even disappeared for the few days I've been at sea level over the past year, even before I knew about the brain mass. The mass is real though so my feeling is it changes based on elevation, humidity, barometric pressure, etc. UC appears to have done some leading research on at least some of these issues but I think the first step is ruling out a malignancy if possible. Also being in New Mexico is not the greatest locale if I need emergency brain surgery. So going to consider establishing residency and obtaining health insurance close to UC's facility in Aurora. Although maybe the doctor will have some better ideas.

Have you tried picking your nose far enough to dig the mass out yourself?

[Chopper 17,314]

x

Edited January 25, 2020 by Chopper

[Chopper 17,314]

3 minutes ago, Message Board User said:

Have you tried picking your nose far enough to dig the mass out yourself?

Yes but didn't find anything but snot so I wiped it on your mom's ass and went back to fucking the shit out of her. Thanks for asking.