A few weeks ago, I shared that, after an exhausting 3 years of searching for a diagnosis during which my quality of life and capacities rapidly deteriorated, I was finally diagnosed with bilateral internal jugular vein compression (IJVC). In my specific case, my C1 vertebra and styloid (among other structures in the neck) are crushing my jugular veins—to the point where they literally vanish on CTV imaging. The occlusions are that severe.

The surgeon I consulted with was shocked by how critical my condition is and couldn’t believe I’d retained any function at all. (As I told him then, it’s largely an illusion—I barely have.) He was even more shocked by the collateral veins—alternative circulatory pathways that grew because my jugulars were so blocked—in my brain. He called them among the largest and most dangerous he’d ever seen in decades of surgical practice. The IJVC has also caused increased intracranial pressure, another dangerous condition, and prevents my cerebral spinal fluid (CSF) from appropriately draining—like having your brain sit in dirty toilet water. It’s highly likely the IJVC has been the root cause of my chronic pain and fatigue syndromes all along, for which I’ve needed expensive, frequent treatment since 2006.

My situation is dire. My quality of life and capacities continue to deteriorate. The collateral veins in my brain are ticking time bombs. It will be a miracle if I survive the year.  

According to my surgeon, a single decompression surgery could resolve the entire issue: that is, if the 90%+ occluded side is decompressed, there’s an excellent chance that my circulation improves enough that we may not need to surgically intervene on the other side.

This life-saving, function-preserving surgical treatment was denied by Aetna as “not medically necessary.”

I, however, am on the brink of death every day due to my IVJC-induced increased intracranial pressure, swollen and blocked collateral veins, and symptoms stemming from the IJVC itself. Here are some of the symptoms that Aetna has deemed “not medically necessary” enough for surgical resolution:

• Cognitive impairment to the point of perpetual disorientation, significant loss of short-term memory and recall, forgetting how to speak, forgetting my own name
• Excruciating pain in the head and neck, including tenderness in the jugulars themselves
• Difficulty getting out of bed and extreme malaise and lethargy
• Extreme temperature dysregulation, to the point where I get so hot I require ice packs and immersion in 60-degree cold water to bring the inflammation down
• Increased intracranial pressure resulting in a constant “worst headache of my life”
• Dizziness, nausea, vertigo, balance and gait impairment, to the point where I rely on a cane, can’t walk a straight line, and am a fall risk
• Vision problems, primarily visual snow—where my visual field is clouded by static—but within the last year, blurry vision, occasional double vision, problems with eye tracking
• Inability to move my neck and head, bend over, or chew food without causing a cascade of all the symptoms above
• Episodes of blacking out or fainting due to positional changes in the neck that fully crush the jugulars
• Pulsatile tinnitus (in addition to regular tinnitus), often with a popping and cracking sound that can more strongly indicate the possibility of a stroke

First, Aetna employed stalling tactics: They waited a week and then canceled their first initial precertification review; when I called them, they insisted for hours that my surgeon had “submitted no clinical documentation” only to finally admit that their precert team had misfiled and failed to read the correct documentation. Despite being at fault, they demanded re-submission of clinical documentation, which my surgeon’s office did promptly.

Then came the first denial based on lack of medical necessity… and based on diagnoses I don’t have.

When I spoke with Aetna’s precertification and patient departments about this denial, both informed me on the phone that the real diagnoses for which I need decompression surgery (IJVC, swollen collateral veins and heightened stroke risk, increased intracranial pressure) are irrelevant, simply because their clinical policy bulletin lists other diagnoses (Eagle’s Syndrome, Ernest’s Syndrome) that are preferable—even if fictitious—because they don’t require surgery. (The denial paperwork I received didn’t even list all the clinical policy bulletin numbers or reasons for each denial, and Aetna’s representatives refused to tell me what the missing reasons were.)

Yesterday, my surgeon did a peer-to-peer with Aetna’s medical director—probably someone retired in a field completely unrelated to my diagnosis—who upheld the denial, even when my surgeon threatened to involve the media because of how shocking and clear-cut my case is: Near-complete occlusion of both jugular veins; swollen, ready-to-burst collateral veins in the brain that can only be addressed through decompression; and increased intracranial pressure. A life-threatening collection of problems. But to Aetna, saving my life is not medically necessary. Aetna’s medical director insisted my surgeon file a written appeal, prolonging the decision by over a month. And for now, it seems that’s that.

As Aetna knows, I’ve been in PT for my head and neck and tried multiple treatments for 20 years. Nothing has worked. Because nothing but this surgery—which Aetna has denied due to “lack of medical necessity”—can work. It’s a game of chicken. If I die first due to all these delays, I won’t cost them a dime.

And if the denial is formally, finally upheld after the written appeal, I have to figure out how to pay $150,000 myself. I’m a newly tenured professor whose take-home pay after cost-of-living and disability healthcare is barely $1K a month. It’s medical bankruptcy for me. It’s next to nothing for a company like Aetna.

This decision doesn’t even make sense for Aetna from a fiscally responsible perspective, as I will now have to continue to drain Aetna’s resources to try to manage this condition, instead of resolving it—and along with it, resolving a number of symptoms that I’ve needed regular, consistent, expensive treatment for since 2006. It would be cheaper to approve the surgery. But insurance companies aren’t patient-centered, even when it comes to their own finances.

I’m a multiply-marginalized woman of color. The odds have always been stacked against me in American healthcare. I’ve lost a lot of function. I’m losing more while fighting to reverse this denial. This condition is causing long-term, permanent, irreversible damage. I’m exhausted. I’m frightened. I’m broke. I don’t want to disappear or die.

Please help me exert pressure on Aetna. Share this widely. Share it on your own social media. Share it with writers and journalists. Share it with people with platforms. Anything to get them to reverse their denial and help me stay alive.