Initial Consultation

After 4 phone calls to the Piper Clinic in St. Petersburg, Florida, we have finally scheduled an initial consultation. Appointments are normally scheduled 4 months in advance, but we were lucky to call when they had a recent cancellation. Our initial consultation is scheduled for May 5, 2015.

I thought I would start this blog to document the TMJ journey my wife, Rebecca, has started. After meeting with a TMJ specialist on April 2nd and finding out that there were limited options, we started researching to find people who had been through similar situations, specifically other patients that had stories on their surgery and recovery related to the Piper Clinic. We successfully found 3 other blogs related to these surgeries/recoveries, and they were extremely helpful and provided a lot of information. I won't say that we are any less anxious about the upcoming months, but the blogs we found at least provided answers that we needed at the time.

Rebecca's jaw has continued getting worse, even in just the 2 weeks since seeing the TMJ specialist. Many foods are hard and nearly impossible for her to eat. She has been living on yogurt, soup, and mashed potatoes. The TMJ specialist did a lot of testing on her jaw during the consultation, and I assume that's why she has had additional pain and problems eating the past 2 weeks.

We have a long journey ahead. An initial consultation, 2 weeks in Florida for surgery and post-op care, a soft food diet for Rebecca for many months, appointments every 3 months, braces, and I'm sure many more surprises in the future. I hope this blog serves as a good way to keep everyone updated on the progress of the surgery and recovery, and I hope that others are able to find this blog when they have a similar diagnosis, similar fears, and a similar hope for a full recovery.

Hope

April 2, 2015: So many feelings today...anticipation of finding an answer after a diagnosis 20 years ago; being overwhelmed at what seems like the only option; frustration that profits and money are more important than health and a pain-free life; and excitement that we finally feel like we've found an answer.

20 years ago my wife was diagnosed with juvenile rheumatoid arthritis and started having problems with her jaw. Naturally, the TMJ in her jaw got lumped into the arthritis diagnosis. Some doctors thought her jaw stopped growing. Some thought she should get a titanium replacement of some sort. Some thought she should get braces to fix the misalignment. Some thought breaking the jaw to get it to grow again might work. At 15, the pain wasn't consuming every day life, so a treatment plan was put on hold.

Fast forward almost 20 years...a husband and 4 kids later, I see my amazing wife unable to eat many foods she loves, sometimes unable to talk well in the mornings, and sometimes with a migraine due to jaw problems. (I would just like to say, most of her friends probably don't know much about this because she is amazing and doesn't complain much...and doesn't want people to worry about her) After moving to Normal, I decided to look into other treatment options...after all, medicine has improved over the 20 years since her diagnosis. And that's where today comes into play...

Today held the anticipation of finally meeting with a TMJ specialist to talk about surgical options. We met with a very knowledgeable TMJ specialist in Bloomington today that laid out a plan that seems right. A plan that involves extensive surgery, but a plan that gives the hope of minimal future pain. The doctor provided answers that seemed a little surprising also.

We found out today that the jaw problems were not a result of the arthritis but rather the result of some traumatic injury to the jaw. I'm sure it would be hard to figure out what specific injury caused this specific problem, but something caused both of Rebecca's discs in her jaw to become dislocated in her development years. No discs, and bone constantly rubbing against bone means that at age 32, Bec's left jaw has gradually grinded away - meaning that only 25%-40% of her left jaw bone still remains intact. If left untreated, the doctor said in 5-10 years, she might not be able to even open her mouth.

The overwhelming part involves the specific procedure that will need completed. I will spare the details in this post at least, but most doctors won't even touch trying to fix that problem. The answer to that question became apparent today as well...

I can't say that I'm different than anyone else, and I remember choosing my occupation at least partly due to my estimated future income potential. Most people interested in dental work wouldn't be interested in pursuing a TMJ speciality because insurance companies think it's a cosmetic procedure and won't pay a dime for anything related to TMJ. So if TMJ specialists can't earn a decent living because people can't afford to pay them for their services - who would want to specialize in TMJ related surgery? Insurance companies are too concerned with profits. They've shut down the initiative of many doctors by not covering a surgery that alters someone's entire life. The few TMJ specialists that consider surgery an option aren't powerful enough to lobby against insurance companies to ensure this is a covered procedure. So medicine is ultimately a for-profit business, and the well-being of patients suffer. Calling a TMJ surgery that my wife needs a cosmetic procedure is ridiculous. In 5-10 years if nothing is done and she can't eat, you're saying a jaw problem is cosmetic? Bec does have the excitement of a future without pain, but that is something that will cost us (people who pay thousands of dollars a year on medical and dental insurance) six figures plus travel expenses...because insurance companies only care about profits and are willing to throw ethics out the window.

But there is excitement. We will be seeing a doctor in Florida for a consultation about a proven surgery. Sure, the surgery and recovery sounds scary. But life without pain, life without migraines from a jaw that is 60%-75% gone, and life being able to enjoy foods that you love is worth the setbacks.

(I love you, Rebecca! I think you are amazing and one of the strongest people I know!)