Surgery & Recovery Fund

I have lost my Blue Cross Anthem insurance for my jaw joint replacement surgery planned for next year. My surgeon is trying to rush the custom prosthetics. This happened last year with my United Health insurance pulling off the ACA and led to another failed surgery - due to rushing and trying to use stock prosthetics that were the wrong size. I have been in shock and tears since trying to renew my plan or find a new one  - but I have no options in Virginia or most states due to six figure surplus cost after insurance . My surgeon's office is trying to arrange an extension with Blue Cross - otherwise my surgery will be next month.

 

I can barely talk, chew, swallow, hear, breathe, sleep, balance, manage the pain, or function because my jaw is dislocated and my joints are degenerated. I have been trying to fix this since 2016 after successfully opening my airway withjaw surgery at Stanford.  I had no previous joint problems in my jaw or any part of my body. My only known issue was ENS, a respiratory condition from a sinus & nasal surgery that was undisclosed & disabled me. 

 

At the same time I lost my insurance, the "old friend from college" I was counting on to help me through surgery disappeared and broke his promise. The betrayal sent me into shock because now I am facing homelessness next month. I just gave up a public housing spot after his promise to assist me until this was solved. I don't have reliable family to turn to who is supportive or concerned about my health, which was another betrayal that caused PTSD. They tell everyone who tries to help that I have Munchausen Syndrome.  They never offer to help or do anything but lie or shame me for my symptoms when I ask for help. Then they lie that I don't speak to them because I'm a bad daughter or won't explain my issues or accept help. I asked for help for almost 15 years but was denied & told to ask my Oma, who did help & believe me. They were fighting over a inheritance & I was accused as wanting money and faking my symptoms. My family refuses to speak to my doctors or get family counseling. I no longer tolerate their lies, false accusations, neglect, unlawful medical interference, and psychological abuse. I was diagnosed with PTSD due to all the medical and family trauma, as well as escaping domestic violence previously.

 

There are comments online that I would not be better off & getting surgery will not help. That I don't deserve it. This is all ignorance. I made a decade of progress until my joints failed. Progress is not a perfectly upward trajectory, especially in a medical system that has ignored women's  health & fails to track or prioritize outcomes, only profits .

 

Employer plans have national network options to use doctors out of state at more reasonable premiums, but I cannot work until this is fixed. I applied for disability and was denied, after almost a four year wait - and now I have to appeal the decision. I have no idea how much longer I will be waiting now.

 

I turned off the comments on my GoFundMe page due to the trolling. Crowdsourcing healthcare is a nightmare, not a bid for attention. This kind of talk, lies, & personal threats scare me & will not be tolerated on my page or in my life. 

 

I have ENS, a progressive breathing disorder. It was caused by an aggressive but routine procedure in 2003 during nasal/sinus surgery that I did not consent to. I had no idea what was wrong for years until I found the only treating ENT in the country. ENS led to constant airway infections, sleep apnea, narcolepsy, fatigue, and other neurological issues. I was helped by several corrective surgeries to manage necrotic tissue and multi level infections.

 

After many throat infections led to a tonsillectomy in 2011, hypermobility (tissues stretching out again & collapse from muscular overwork & hypertrophy) began getting worse in my upper airway muscles. This was an unprecedented reaction to a standard surgery & protocols. Trimming the palate according to standard protocol made it worse at first, but it helped a little in the long run.

 

Eventually my ENT realized my muscles were working backwards from overbreathing due to ENS and strangling me, effectively collapsing my airway on every inhalation. My nose sealed off when I breathed in, suffocating me not only in my sleep but during the day. I tried every technique I could to breathe.

 

By 2011, I could no longer breathe well enough to function during the daytime, much less during sleep. I mostly stayed in bed or went to doctors, for years. My doctors tried many things that did not work enough to stop the airway collapse - scarring injections, Botox, cartilage implants, palate surgeries.

 

The next step in the protocol was jaw surgery to open my airway. I went to the top place in the country for this surgery - Stanford. I had to repeat surgery twice because of the instability of my joints. I never had joint issues anywhere in my body, or in my jaw joints, before this or knew I was at risk. I was able to breathe & sleep much better, but my joints deteriorated. Now I need to replace these joints. 

 

I am not ‘fixing cosmetic dentistry," having pointless surgery, a surgery addict, do not have undetected "Munchausen Syndrome," or seeking pain pills for a secret addiction. I am not faking anything or grasping at false hopes. I am trying to breathe and fix crippling complications and oversights. I need to breathe. And have my jaw connected to my skull. Period. Feel free to make up stories at your own risk.

 

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After struggling for years with debilitating Empty Nose Syndrome (ENS) causing endless airway infections and sleep apnea, I was told repeatedly to reduce my enlarged tonsils and palate to improve my symptoms, breathing, and sleep. Previous surgeries to manage my symptoms had been successful, and I had no reason to think the same would not be true this time. I had many opinions from doctors in agreement and support of this step due to a congenitally narrow airway.

 

Unfortunately, after my tonsillectomy surgery in 2011, my airway collapsed again, stretching back out worse than before, completely blocking my nasal breathing posteriorly.  I continued to try every step my doctors suggested, from CPAP to turbinate injections, Botox, airway stents, breathe rights, tongue displacement, medication for narcolepsy or asthma, breathing implants, jaw advancement. Everything except a tracheostomy. I have improved, but I am still unable to breathe properly enough to function. I tried endless palate surgeries but they stretched back out.  Structural jaw change was my only option to open my airway at all levels. I am breathing better through my nose and past my palate, but jaw surgery resulted in joint problems that are so severe I am in bed, nauseated, unable to walk properly or find any balance until I finish addressing the joints.

My jaw came off on one side until all my teeth were loose and my hearing began to go on that side. The inner ear fluid and issues are extreme now, affecting my ability to do anything for myself most of the time. I try to manage with medications, but it's not enough.

It is slow progress due to the hypermobility complications and these insurance & prosthetic complications along the way. I need help to afford my upcoming travel and housing costs, plus increased insurance copays. I don't feel entitled to anything but what I need to survive & try to get better.