I am new to this forum, but have been around a very long time, reading all of your posts about living with this awful disorder. This site has been very helpful for me, so I thank you all. Now I feel I should contribute some of my own thoughts and see what you guys think.
You can scroll down to the bolded parts if you want to skip over my drawn out TMJ history. :P
A little background to my TMJ: My problem started 3 years ago, after I had my 4 wisdom teeth removed. I believe the problem was caused by:
a) My incompetent and careless oral surgeon who prided himself on extracting 4 teeth in 15min instead of taking his time to do a quality job.
and b) Not being asleep for the operation; I feel that the fact I was awake caused me to struggle and strain against the uncomfort of having my jaw forced open, which wouldn't have happened if I was unconscious. This probably caused my ligaments to stretch/tear.
About two weeks after my extraction I experienced my first lockjaw. It was TERRIFYING. I quickly made an an appointment with the oral surgeon and he said it was a normal symptom that would go away after my mouth settles from the surgery.
Needless to say, it never happened... And the symptoms got worse and worse as time progressed.
At the beginning it was intermittent jaw locking (left side of jaw only) and daily pressure/migraine headaches on the sides of my head that were so debilitating that sleep (being unconscious) was the only remedy.
I had a chiropractor do muscle trigger point therapy in the muscles in my neck and face about three times a week and it relieved A LOT of the headache. She was also nice enough to teach me how to relax my muscles and to do some trigger point therapy on myself.
Although the headaches were mostly gone, after a while my left jaw lock became permanent (1 knuckle only) with the ability to unlock if I extend my bottom jaw forward and then to the left a little. That's also when I started experiencing extreme vertigo, balance issues and ear itchiness.
This is when I caved and went to a dentist (I hate dentists more than anything) to help with the problem. The neuromuscular dentist I found was horrible and I really should've searched around for someone better before dropping $4,000 on his lap for my therapy. We did all that TEMS stuff - to be honest I didn't really feel any different afterwards - and then he made my first splint. When the splint came in it didn't stop my jaw from locking up so he sent it away to be remodeled.
The second splint was even worse... But he was convinced that if I wore it long enough it would just eventually fix my jaw.... So that's what I did... I wore it 24/7. One morning I woke up and my face was in such a spasm that I couldn't unlock my jaw at all. I could only open at the 1 knuck amount. I had to fit my tooth brush inside my mouth sideways... That's how bad it was. The dentist prescribed me muscle relaxants. They made me feel extremely sick, but didn't help. My spasmed jaw lasted a whole month, until one day when it just released itself for no reason I can think of.
After that I gave up with the splint. I was terrified of what it had done and wasn't about to try it again. The dentist said maybe I wasn't a candidate for the splint and that it was looking like I would need surgery. I heard him mention prolotherapy to his assistant, but never once said it to me. Thank god I remembered what he said and looked it up online as soon as I got home. I found someone who did prolotherapy in the city I live in and started doing treatments. The shots were expensive, $127 a visit, but so worth it. It eventually changed me from one knuckle to two knuckles opening in the locked position! Progress! It also helped remove a lot of the heaviness/stiffness I felt in my jaw from the locking.
I had 6 shots in total, but the doctor was straight up with me and said that the progress was good, but wasn't good enough to have him believe that it would ever cure my jaw locking. However, the final time he did the shot he recommended that I put in my splint as soon as he was finished and keep it in for the rest of the day and that night. So I did it and the next day I felt like a million bucks. No pain, no heaviness, no balance issues and most of all... No locking... AT ALL. I took out my splint and for the first time in 2 and a half years I had a completely normal mouth again. I cried I was so happy. But sadly, the next day I locked up again and I cried because life is so cruel! :P
Because I could no longer afford the prolotherapy I just stopped with all treatments. I had alleviated enough of my pain to be manageable and live normally.
Now, 3 years after my first jaw lock, I experience a lot of pressure and aches in my face - especially in my nasal/eye region and extreme eye sensitivity, but no major migraine headaches and at least I can open up my jaw a decent amount without unlocking.
My most recent symptom is a quick shooting nerve pain that happens on the right side of my jawline whenever I yawn or unlock my jaw (locking happens on the left). This kind of has me worried and wanting to get back into looking for a solution for this jaw problem before it gets even worse.
I've also noticed that I have to keep pushing my jaw further and further to get the unlock to happen... And I've read on here that eventually I probably won't be able to unlock at all if I don't do something about this - although it might be too late. But one thing I would really like to revisit was the prolotherapy + splint combo. I believe if I hadn't have been so anxious and taken the splint out the next day, maybe I could've actually had some lasting results? Has anyone tried prolo and a splint together?
Right now I'm looking to change my neuromuscular dentist... Not out of choice (even though he was awful), but because he moved away which means I will be paying another dentist to make me a splint and do everything all over again.
What I'm thinking is if I can get a decent dentist to make me a decent splint and do prolo again at the same time then maybe it will allow my ligaments to "heal" and bring my disc back into place, enough to finally reach a phase II treatment like braces. Also thinking of getting physiotherapist that specializes in tmj and/or a massage therapist that specializes in myofascial release to also help.
What do you all think?
Also, I actually don't know what my exact tmj problem is, the dentist never told me. After all I've read it seems that I have a displaced dic because of the locking, but also very loose/torn ligaments. Regardless, I got a referral to a surgeon to get an MRI and CT done, but I'm not sure if it'll be worth the money (my coverage is really bad so I don't expect to get a lot back). Do you think it's important (worth the money) to get these scans and know what the exact problem could be? Do you think it would it change how I would act on my TMJ anyways?
Anyways, sorry for the essay/rant.
It's nice to be here and I hope to share more in the future about my progress - if there is any!