When I was 35, my dentist told me I was clenching my jaw at night.

I didn’t believe him until I woke up and felt I was clenching. He sent me me to a jaw specialist. They did x-rays, which indicated my jaw was crushed on one side due to the intense clenching.

He put me in a night splint, and over time, I chewed through three different splints, my clenching was so strong.

Because I kept clenching, I was placed in a night splint that created an open bite, making the problem worse.

During this time, I switched dentists due to insurance changes. The next dentist also told me I was clenching my jaw. I was in danger of losing my teeth and I had significantly reduced airway constriction. It had become an emergency.

They recommended I see an orthodontist.

I visited the orthodontist who told me I needed to have new jaw joints (replacing them with prosthetics, a le forte (where the upper jaw is separated from the rest of the face and repositioned) and a jaw advancement, increasing my airway space.

I got multiple opinions and settled on a surgeon. Oral maxillofacial surgeons are typically not covered by insurance and it’s expensive: those fees alone are $75–100k. The joints are customized and take anywhere from 4–6 months to build.

I scheduled the surgery and prepared reading blogs, gathering supplies, making meals.

Surgery was 10 hours. I suffered from major complications.

I spent 5 days in the ICU. I had to relearn to eat with a jaw. Pain even with meds was bad, and my surgeon was unavailable.

I knew something was wrong.

First, I was diagnosed with an ossifying muscle - which meant my muscle was turning to bone.

Second, 3 weeks post-surgery, I told my husband to take me to an emergency ENT medical appointment where they first diagnosed me with a burst eardrum. They attempted to patch it, but ultimately, I needed surgery, six months later.

My hearing never fully recovered, and I have slight hearing loss in one ear and tinnitus. I lost 40 pounds and looked skeletal because my body was shutting down. I was on heavy medication and saw many specialists to try and address all the side effects of the surgery.

We performed CTs, MRIs, and Xrays to try to understand what the cause was. The scans were read and nothing specific could be determined.

I was diagnosed with trigeminal neuralgia, which is called suicide nerve pain because of the intensity of the pain levels.

Two years later, I scheduled a remote meeting with one of the best oral maxillofacial surgeons in the world. He told me he couldn’t see anything wrong. I begged him at the end of the call to please look one more time at the scans I’d sent him to make sure there was nothing.

He kindly did, and I waited for him to review, the minutes ticking by. And then told me, “Oh, I see it. You have a screw in your nerve.” I burst into tears, ugly crying in front of this stranger. Two years had gone by.

I finally had an answer.

He told me I had to come to his offices to have jaw surgery again, removing the joint, fixing the nerve and putting it all back together. He was 12 hours away.

He needed to see me as quickly as possible. I got a second opinion, confirming there was at least one screw in my trigeminal nerve. I raced to get insurance approvals and my life organized. 20 days later at the height of COVID, prepared for surgery

On December 23rd, 2020, I had jaw surgery again.

This time it was four hours long since they were only doing one side, and the nerve endings were stitched together instead of using a donor graft.

I wish I could say the surgery completely fixed all my pains.

With nerves, if you don’t address the issue within the first six months, your chances of success significantly reduce with time. Also, I developed a severe infection and they almost had to redo the procedure. Thankfully I recovered enough to travel home after almost 3 weeks.

I still have pain on that side and have trigeminal neuropathy.

And my face is numb on my right side - I have very little feeling, even 19 months later.

Here is what I've learned.

Do not expect someone else to advocate for you. You must speak up and you must be persistent. Trust your gut
Do not assume your medical team will educate you. You will have to research medications, alternative healing approaches and ways to mitigate stress in your life
You. Can. Do. It. I worked almost the entire time I went through this journey. It will be hard. You must persist. Do not give up.
I still have pain for life. But I have pretty amazing days. And that's what I choose to focus on, especially once I take my pain medicine

I've had my jaw wired shut for four weeks. Here's the best piece of advice that helped me find balance time and weather the emotional storm

When I was 35, my dentist told me I was clenching my jaw at night. I didn’t believe him un

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