Sarah’s Total Jaw Joint Replacement

Hi there!

My name is Sarah. I’m a fun-loving 33-year-old mom of many wild, incredible kids. I also have a rare and progressive degenerative joint disease called Idiopathic Condylar Resorption (ICR) of the temporomandibular joints (TMJ’s/jaw joints).

What, you’ve never heard of it? That’s okay… neither did my first however many doctors! This resulted in me being either undiagnosed or misdiagnosed for years (we’re talking 20+ years) – all the while allowing this condition to continue steadily eating away at my own jaw joints.

ICR is a condition in which your body attacks your own bone – literally causing it to erode away, which has resulted in my lower jaw essentially disappearing! Recessing more and more until it began constricting and basically crushing my airway. Still having trouble imagining what that’s like?

Well, throughout every single day, I experience periods of time where I feel like I literally cannot breathe, unable to fill my lungs. It’s similar to the feeling of a panic attack, if you’ve ever experienced one of those, except I am physically short of breath. It’s really scary and mentally draining, as there’s really nothing I can do about it, other than trying to stay calm (pretty difficult) and repositioning, hoping to find a way I can take some satisfying breaths.

So imagine that being your daily life. Not to mention how much harder exercise and physical exertion becomes when your body is being deprived of oxygen. Difficulties also include obstructive sleep apnea, as well as constant fatigue and exhaustion.

Want to know some of the other sweet side effects that come with this condition? Here ya go!

- ICR causes the jaw and, in turn, the teeth to deform in gross ways. For instance, only TWO of my teeth were touching at one point. After 26 months of orthodontic work and following the extraction of two healthy teeth (in preparation for the surgery my insurance has denied), I now have a grand total of… FOUR teeth capable of touching each other (if I move my jaw in a very specific way, yay).

- Due to having an extreme open bite and overjet, my front teeth do not touch together… at all. I cannot bite things in the front such as a sandwich, burger, or well, pretty much anything! The gap is so large that, with my mouth “closed,” I am still able to fit a finger between the top and bottom teeth. Imagine having your mouth shut, but you’re still capable of poking a finger in and out between your teeth. Yeah…

- Constant facial pain and discomfort. ICR is not simply a cosmetic issue. Who would have known that when your bones are literally being eroded away… your face hurts – like, a lot! The body does its best to compensate and keep you alive, but that comes with a painful cost. And clicky-clacky, crunchy joints.

- Emotional distress. Besides the multitude of physical issues this disease has caused me (dental problems, breathing difficulties, sleep apnea, loss of function etc.), it has been extremely difficult watching my face/appearance change in such alarming ways – to the point where I struggle to even recognize myself in the mirror anymore. Weird things happen when your jaw decides it wants to be… gone!

INSURANCE DENIALS AND COST:

My health insurance company has repeatedly been denying my pre-authorization for surgery, on the basis that it is not deemed medically necessary. Apparently, this company thinks that things like being able to breathe and chew should be optional in humans. Cool.

My health insurance will NOT cover any part of this surgery, the hospital fees, the prosthetics etc. I am looking at an out-of-pocket cost of $91,609.00, not including travel and accommodation (and I will need to remain in Oklahoma, where my surgeon is, for some time following surgery, to recover, prior to returning home, and for follow-up appointments with my surgeon).

WHY I’M ASKING FOR YOUR HELP:

I have been battling this condition for SO MANY years now. After so much effort and struggle to reach this point, finally being diagnosed and realizing all of this can be fixed, it has been heartbreaking to find my insurance refusing to assist me with anything.

I have been doing everything I can to ensure this surgery can take place (16 month battle with my insurance company, so far) – so I can lead a normal, healthy life, so I can wake up feeling refreshed to take care of and play with my babies. So that I can breathe, eat and sleep normally. This GoFundMe is another attempt on my end to achieve my dream, and I would wholeheartedly appreciate your support.

Whether that be contributing towards the cost of surgery, or the travel and orthodontic costs, or even sharing my stories with others. I’ll be eternally grateful for any support given to me and I really hope that one day I can pay it forward to some other person in need of a little help.

For those interested in the medical parts of my whole ordeal, these will be listed below.

TREATMENT FOR IDIOPATHIC CONDYLAR RESORPTION:

The only treatment for Idiopathic Condylar Resorption is Total Jaw Joint Replacement, and in my particular case, this will be combined with upper jaw surgery and some other procedures.

My personalized treatment plan is as follows:

• Bilateral Total Jaw Joint Replacements. Both diseased jaw joints will be removed and replaced with prosthetics.

• LeFort I Maxillary Osteotomy. Upper jaw will be separated into three pieces so that it can be repositioned to correct malocclusion.

• Coronoidectomy.

• Septoplasty. To correct my deviated septum and improve breathing.