My ME is in remission

[mymichelina]

Do a search for "midline congestion syndrome", something that can be a consequence of Scoliosis causing a narrowing of the left renal vein. This can lead to causing neck pain and headaches when kidney return blood flow is more directed into the azygus venous collection system, possibly also causing increased intracranial pressures where some excess blood flow gets directed to the spinal canal and thus, the potential to cause lesions in the brain too.

Thank you so much!

 

[valentinelynx]

With few exceptions, all US insurance plans will cover it.

I wish that were true. I have a plan limited to providers in Tucson and Phoenix. No out of network benefits. These plans are very common these days. Perhaps it might be possible to convince them that this procedure is not available in-network and it's medically necessary, but then I might be dreaming.

 

[crypt0cu1t]

Yes it did look like ME...because it was!

Unfortunately I did just miss the stress test, but hopefully we will be able to test future patients getting this surgery. I did have extensive metabolomics testing, acetylcholine receptor autoantibody testing, CPET, NK function, etc. and all of my testing is in line with research findings.

Did you have the AChR Antibody?

 

[Remi]

According to a swedish blog the cost for a "Craniocervical fusion in the levels C0-C7- Posterior fusion stabilization" in Barcelona (with Dr.Gilete and Dr.Oliver at the Teknon Hospital, I think) was about 57 200 USD. The diagnoses that were treated in this case was Craniocervical Instability, Atlantoaxial Instability, Subaxial Instability och Cervicomedullary compression syndrome.

Does anyone know if, in the US, this operation has been covered by insurance or are these all privately funded procedures?

I would add numerous probably 2 zeros to the: total cost US.

Someone with EDS, ME and CCI paid €68,000 at dr. Gilete, but it's possible her fusion was more complex than c0-c1. I saw quotes of about $500,000 for dr. Bolognese.

 

[roller]

what are the cci-patients told after surgery ?
to build up on exercise and strenghten muscles ?

 

[gm286]

@junkcrap50

Four essential files. There is (of course) more activity as well as more resources on the group.
Files describe ten supplements plus brand recommendations.

 

[Mary]

SEVERAL POSTS FROM THIS THREAD RELATING TO WHETHER OR NOT RECOVERY FROM ME/CFS AFTER CCI/AAI SURGERY MEANS THE PATIENT WAS INCORRECTLY DIAGNOSED WITH ME/CFS TO BEGIN WITH WERE OFF-TOPIC AND HAVE BEEN MOVED TO THIS NEW THREAD: https://forums.phoenixrising.me/thr...i-aai-surgery-exclude-me-cfs-diagnosis.76386/

ANY FURTHER DISCUSSION ABOUT CORRECTLY DIAGNOSING ME/CFS IN THE CONTEXT OF CCI/AAI SURGERY AND RECOVERY SHOULD BE CONDUCTED IN THE NEW THREAD LINKED ABOVE

 

[Timaca]

I wish that were true. I have a plan limited to providers in Tucson and Phoenix. No out of network benefits. These plans are very common these days. Perhaps it might be possible to convince them that this procedure is not available in-network and it's medically necessary, but then I might be dreaming.

I also live in Arizona, and I'm guessing my insurance would also only cover doctors in this state.... Sometimes you can appeal such things....but.....

I guess we'll see. First I have to decide if I want to pursue the testing for it. I have a friend who is a radiologist that is reading up on the links I sent him. (Bless his heart). Since I had a better day today (CFS wise) it makes me wonder if this could be an issue or not....

 

[jeff_w]

I wish that were true. I have a plan limited to providers in Tucson and Phoenix. No out of network benefits. These plans are very common these days. Perhaps it might be possible to convince them that this procedure is not available in-network and it's medically necessary, but then I might be dreaming.

Sorry to hear it. It's an injustice.

With the right documentation, people with no out of network benefits have successfully appealed to their insurance companies, in order to see an out of state specialist neurosurgeon. It can't always work, but it happens quite often.

 

[ebethc]

has anyone in the psych community commented yet?

I don't see them admitting that they were wrong all these years and have been gaslighting patients.. I wonder how they're going to spin this one..

 

[overtheedge]

So, all you dudes with limited insurance, could you get a different insurance before the surgery or would that be wrong?

If it isn't allowed to do such a thing when would it have been appropriate to get a better insurance, before the scans have been taken or something?

What kind of insurance would securely sufficient to cover the surgery?

 

[valentinelynx]

Sorry to hear it. It's an injustice.

With the right documentation, people with no out of network benefits have successfully appealed to their insurance companies, in order to see an out of state specialist neurosurgeon. It can't always work, but it happens quite often.

I appreciate the encouragement!

 

[valentinelynx]

So, all you dudes with limited insurance, could you get a different insurance before the surgery or would that be wrong?

If it isn't allowed to do such a thing when would it have been appropriate to get a better insurance, before the scans have been taken or something?

What kind of insurance would securely sufficient to cover the surgery?

A different insurance? In what world are you living...?

I consider myself fortunate to have insurance. I had none prior to the ACA, because I was self-employed with pre-existing conditions. However, with the GOP's sabotage of the ACA, the insurance plans offered have become very limited. Last year there was ONE insurance company offering individual plans in my area.

The plans offered are all HMOs with narrow networks (very limited providers and no out-of-network benefits). This year there were 3 options of insurance providers, but 2 of them were limited to so few providers that they were useless to me. One covered one hospital, 10 miles from our house, and a bare handful of specialists. At least now the company I'm with covers the only tertiary care hospital (e.g. the University hospital, cares for major trauma and complicated illnesses) in town. The other two companies offering plans do not. However, that company (Ambetter) has major issues (see below).

You read of people in other states who are worse off. They had only one option of insurance provider and that company had no providers available in the area they supposedly covered. Centene (owner of Ambetter plans) is in trouble for lying about their provider panesl: claiming they covered doctors they didn't. I'm sure some of that was because the providers terminated their contracts with that company because it had a terrible track record for paying them. This company, Centene, has had a class action lawsuit filed against it because of these practices. And I just read that it is under investigation for major securities fraud related to its merger with Health Net, in which they hid a billion dollar loss among other shady practices. So, those of us dependent on this (allegedly) criminal company may find ourselves out of luck for health care.

Those of you who have insurance through an employer may have better options. Or if you have Medicare. Most Medicare Advantage plans are also HMOs with limited provider networks, but there are some PPOs available. And you can change your Medicare plan twice a year now: in the fall and in the beginning of the year. Or you can get a traditional Medicare plan which covers 80% of the cost of care nationwide (but only from providers who will accept Medicare). It's best to combine traditional Medicare with a Medigap plan to cover the costs not covered by traditional Medicare. But make sure you buy the Medigap plan during the six month window available at the beginning of your Part B coverage or you lose the option for guaranteed coverage (with some exceptions; it's complicated).

As for what insurance would "securely cover the surgery," there's no guarantee that any insurance will cover it. You may need to go through an extended prior authorization process. However, a PPO plan typically will pay a portion out-of-network claims, if approved. The coverage will not be as good as for in-network providers (e.g. maybe 50% rather than 80% of the cost) and will have a higher "maximum out-of-pocket" limit (MOOP, the maximum amount of money you pay for covered health services in a year before the insurance covers all covered costs) for out-of-network claims. For example, if your MOOP for in-network claims in $6,500, the out-of-network MOOP may be $13,000.

To be complete, there are still some individual and family plans (not employer sponsored) on the market outside of the ACA in some areas (but not where I live). However, if you have a serious pre-existing condition, you will not be accepted into these plans. There's also now the strange category of faith-based "health sharing" plans. I looked into the details of these recently. It seems like a big gamble. They are not insurance. Instead they take money from their members and, at their discretion, pay for other members health costs. Pre-existing conditions are denied for varying periods, depending on the company: a year or two is typical. But there is no guarantee that they will ever pay any of your costs. They don't have to, because they are not insurance, and therefore don't come under insurance regulations. I seriously doubt they would cover a major cost like this surgery, especially for a pre-existing condition. If you look into these, please read the terms very carefully and be sure to look at the reviews.

So, the best time to buy your insurance? If you're on the independent market: buy your insurance before you are diagnosed with ME/CFS, and before you have any symptoms of that or anything else. Otherwise your options are: while you are working in a job with good benefits that offers a good PPO plan, but you cannot quit that job! Failing that, then you will need to be married to someone with good insurance (or divorced with continued coverage in your settlement). The final option is Medicare, available after age 65 or after two years on Social Security Disability (SSDI).

I'm sure I've left something out. I'm not an insurance expert, just someone who's had to look into all this stuff.

 

[voyteck]

@JenB In 'Health update #3' you wrote: "just the act of being in slightly cool water overwhelmed my ability to regulate my body temperature and I crashed — hard."
Can you describe briefly what were your problems with temperature?
(I didn't want to bother you and searched your posts on PR but didn't find this info).

PS After reading this whole thread I am beginning to suspect even my bungee jump - cause first episode of depression (mainly - but not only - lack of energy) happened in the subsequent months.

 

[Gingergrrl]

If I had a tilt table, or could cobble together a makeshift tilt table (from an old door say), I guess I could attach the neck traction device to the tilt table aligned horizontally, place myself under neck traction, and then measure the increase in heart rate when the tilt table is oriented vertically.

I think you are just speculating out loud but I am hoping that you are not planning to try a make-shift tilt table and over the door traction device at home by yourself b/c the results could be disastrous (i.e. you could faint from the TTT while the traction device is around your neck). Please be very careful.

 

[frozenborderline]

pstone@hampshire.edu And please do this guys! That was a really great panel I heard.

Remember guys, if you want to hear a panel including Ron davis address cci, as well as many other things, please politely ask Hampshire for this video pstone@hampshire.edu and media@hampshire.edu

 

[MTpockets]

@jeff_w I was wondering if after the surgery you were prescribed any sort of meds? Anti-inflammatory, antibiotics, pain killers that may have switched things up in your system somehow? Still trying to figure out the change in your biomarkers.

 

[Rufous McKinney]

What kind of insurance would securely sufficient to cover the surgery?

If we knew that, we would know what medicine in the US costs, we would be able to shop around, compare prices and benies. Currently: that is not happening.

 

[overtheedge]

Remember guys, if you want to hear a panel including Ron davis address cci, as well as many other things, please politely ask Hampshire for this video pstone@hampshire.edu and media@hampshire.edu

just got the email back, here's the link to it

 

[gbells]

In that video Ron Davis says that a ME specialist thinks Ehler Danlos syndome is contributing to SEIDs. Similarly, what if the ligaments are pathological and this gives a secondary CCI? You can stabilize it surgically but the underlying SEIDs symptoms that are not instability related should still stick around.