Within the past couple of years, I have read horror stories from TMJ/TMD Patients. Many of those stories start out similar, "I was in terrible pain and I found a doctor who told me he/she could cure me and I trusted that person!"
It can be frustrating and difficult to find a qualified doctor because of insurance and sometimes location. Each doctor/dentist/surgeon will have a different way of treating TMJ, so which way is correct? How do you know who to trust? What should you do?
Every TMJ patient who has had surgery will give the same advice: Find conservative ways to treat TMJ before considering surgery. Once you choose surgery, there is no turning back. Often times, surgery exacerbates the problem, causes more damage, and leads to more surgeries.
Here is the story of how I learned to not blindly trust doctors:
In 2011 my jaw was a mess, as I had suffered with TMJ since I had a tonsillectomy in 1996. Throughout the years, my jaw joints were deteriorating, the pain was increasing, and my opening was extremely limited. I had tried numerous conservative methods including braces, night guards, etc. Finally, my dentist suggested I visit an OMS. I went home, found an OMS near my house, and made an appointment.
The doctor appeared knowledgeable and caring. He could tell by my opening that there was a problem, but he assured me that if he flushed out my joints (arthrocentesis) I would feel better. Finally, I had hope and couldn't wait! I scheduled the surgery. It's a quick, out-patient surgery. The recovery is slightly uncomfortable and I was on limited diet. I quickly realized that nothing changed; I couldn't open my mouth and I was in even more pain.
I went back to the same OMS and discussed my options with him. He explained that in the rare case that his patients are not healed, they need disc repositioning surgery. He explained what that entailed and said he likes to keep patients over night for this procedure, but he knew that this would heal me. I was excited and once again signed the pre surgery paperwork.
The day of surgery I was once again excited and full of hope. I woke up from surgery to find that he decided to clean my joints again. He did not do the procedure we had discussed. He explained that I didn't need it. I went home that day. I would have never signed the paperwork to have the same procedure done again and was disgusted with the surgeon. My jaw was in worse shape than before. My opening was even more limited and the pain had increased. He suggested Botox to help release the muscle on my left side, in the hopes I would have a better opening. Insurance didn't cover it, but I was desperate and it did help a bit.
I made another appointment with him to discuss my concerns, and he told me that he didn't see anything wrong with the inside of my jaw and he was shocked that the surgery didn't work. Frustrated and angry, I left his office and NEVER returned.
In retrospect, I can see where I made mistakes:
1) I didn't research this doctor. I was young and assumed he knew what he was talking about. The office was right down the road from my house, so location was another factor in my decision.
2) He did not have me get an MRI or CT scan before this either surgery. I just assumed it was because of my limited opening. I have since learned that every reputable OMS does at least one of these after the initial consultation.
3) I didn't ask enough questions. Here is a list of questions to consider before surgery: http://positivelytmjtmd.blogspot.com/2015/08/15-questions-to-ask-before-having.html
4) During my first visit with this OMS, I didn't ask him the right questions:
What is your area of expertise?
Do you treat more oral issues (teeth pulling) or jaw issues?
How many TMJ patients do you treat and how many surgeries do you perform?
Here's what I should have done when looking for a TMJ specialist:
1) Ask around and found out what kind of doctor you needed to see. Did you need a dentist, an OMS, an orthodontist, a chiropractor?
2) compile a list of doctors in your area or surrounding areas. These websites might help: https://www.healthgrades.com/
http://www.vitals.com/
3)Check to make sure the doctors you are interested in take your insurance.
4)Do a "background check" of your doctor. Ask friends, family members, other dentist, other doctors, etc what they have heard. Double check their credentials:
https://www.certificationmatters.org/is-your-doctor-board-certified/search-now.aspx
5) Make an appointment. How easy was it to make an appointment? How will the staff keep in touch with you? What is the office like?
6) Be prepared when you visit the doctor. Bring any past records you may have, have a list of questions ready, and be able to explain your symptoms. Also, bring a list of medications you are currently taking. Keeping a pain journal helps (there are many free apps)
7) Interview the doctor. Ask as many questions as you want and listen carefully to the answers.
8)Go with your gut. If you don't like the doctor, find someone else.
9) Get a second (or 3rd) opinion!
Several years ago, I previously discussed this topic in another blog post: http://positivelytmjtmd.blogspot.com/2015/08/choosing-doctor-for-tmj.html
Between the two posts, there is a decent list of things to look for when choosing a dentist, OMS, or someone else for TMJ.
Pain clouded my judgement and I learned the hard way.
Luckily, my orthodontist suggested my current OMS, and I actually spent quite a bit of time researching him. After the MRI, he correctly diagnosed my TMJ issues and explained why I was in pain and had a limited opening. I have had 3 surgeries with him: disc repositioning (unfortunately, both discs dislocated approximately a year after surgery), then I had an open-joint arthroplasty to remove the the discs (they were replaced with a silicon type implant that was removed close to 3 months after surgery-unfortunately, the whatever tissue (?) that was supposed to regenerate never did), and TJR.
Before I first drove to Miami, I did my research. I read articles about him and his practice. I looked up patient reviews. Even though the drive can be aggravating (Miami traffic-yuck) and he is rarely on time for appointments (you may wait up to four hours), he is very kind and caring. When he is with his patients, he is never rushed, answers all questions, and gives a detailed explanation of the procedure/problem/whatever. I am lucky that he is my surgeon :) .
Even though my doctor horror story is not nearly as bad as some of the ones I have read on the Internet TMJ support groups, it should be a cautionary tale for anyone trying to find a TMJ specialist. It's imperative to remember that their is no quick fix for TMJ and what works for one person may not work for another.
