It’s me again. I had yet another follow-up with Dr Hackman and Botox injections, and he thinks the surgery may have unmasked an underlying TMJ issue which is why I am still having pain in the TMJ surgical sites. Just so it’s clear, I have no regrets and the surgery saved my life. I’m forever thankful to Dr Hackman and he’s doing everything he can to help me. The issue is, I live in Connecticut and he’s in North Carolina, so I’m trying to find someone local.
Unfortunately, finding a Dr who truly understands TMD is a f’n nightmare. Half are total quacks and the other half just have no idea. There’s a tiny sliver of the ones who actually know but it seems impossible to find them.
So I’m looking and hoping for some suggestions. If anyone knows a specialist that is located in the New York, Connecticut or Massachusetts area please please let me know. I’m truly struggling to find one I can trust, every time I think I got one I read absolute horror stories or that they have a “proprietary treatment plan with a $10k upfront cost”. No thanks.
Have you checked the FB groups for TMJD? I know CT is a bit of a “desert” when it comes to highly skilled doctors, but for NY I’m quite sure there should be a few.
I’m really glad to hear that Dr. Hackman is sticking w/ you as you try to unravel the source of your remaining pain. @vdm made a good suggestion as far as another place to look for TMJD resources.
I’m on the opposite side of the US so can’t help you with specialists in your area but certainly hope you find someone who can help & who doesn’t charge an arm and a leg to be seen.
I actually joined a group, unfortunately the Drs on their list don’t take my insurance (or any???) and the Drs that run the group don’t take any either. I don’t understand how any of this works or who to trust.
From my experience, really good patient support groups on FB not only are moderated by the patients, but even have rule stating doctors and medical personnel are not allowed to join unless they are patients themselves. To avoid biase and “authority talks”.
Hi where in CT are you located? I had a great experience with someone in Danbury. Really has a holistic approach. His intake was extremely thorough and I feel like if he feels you need to go see someone else he won’t keep having you come back and wasting your time and money. None of my issues have been resolved because I don’t think I just have TMJD (why I am currently here). But it was nice to have someone in the medical world actually take time to listen.
@elijah - I can see the disc but have no clue what proper orientation is. I tried looking at a YouTube video, but it wasn’t very helpful. I hope someone else on here can give an opinion.
I actually just had a friend who’s an oral surgeon look and he said other than some inflammation in my right joint he really didn’t see anything to explain my pain. So task failed successfully?
Did you try to bite on some thin flat material (a piece of folded polyethylene, wooden stick etc ) on the affected side and see if changing your bite alignment would alleviate the symptoms?
So there’s no question that there some postural or mechanical aspect to my pain. Chewing makes it feel better. Walking and standing is better than sitting.
During the MRI, when I had to keep my mouth open they put a syringe in your mouth. My pain was actually best then.
Not sure what to make of it all and I honestly don’t know who to trust when it comes to tmj. Some Drs say splits, some no. Some say the bite needs to change and some others. There’s no consensus and I don’t know who to trust or who will help me or potentially make my problems worse.
There is a chance it’s not TMJ but jaw muscles are overworking/too tense.
Some pharmacies sell bite guards that can be molded to your bite after holding them in hot water. You can try one of them and see if you can find some configuration which allows the muscles to achieve “neutral” position and wear it for a few days to see if it works.
I was thinking that. Issue is, I get conflicting information on this as well. Some say I can’t wear it during the day since it will change my bite which could be permanent. It’s just mentally draining and feels like a black hole in the medical field.