The medical visit I made yesterday that shocked me somewhat was to a TMJ specialist. I have worn an occlusal splint for over 20 years; if I leave it out for any length of time (> 1 hour) I get a headache; if I break it so I cannot wear it (has happened twice), my jaw locks shut. Once I had to get good drugs so my jaw could be manipulated back into place, the other I had an arthrogram to inject dye into the joint space, which pushed the joint back so I could open my mouth.
Believe me when I say that this splint is more important to me than my husband. The one thing that strikes terror into my heart is the idea of breaking my splint.
So, I went yesterday to get a new splint; the present one is 5 years old. The person I saw said to forget the splint by itself; I should go back into braces (I had them in the early 80's in an attempt to fix this issue, and actually made it worse), and also have both my upper and lower jaw broken and reformed in tandem with the orthodontics. That is called orthognathic surgery. That is not news to me, I've had that mentioned to me on occasion over the years. This is the first time I've had it presented in such a forceful way. I mentioned that no one in Washington DC that I saw would give me a new splint or touch the present one. He said I have one of the complex problems he has seen, so most would not want to tackle my case as it is not cut and dry.
Anyway, he said there was only ONE oral surgeon in the US he would send me to, a guy in Santa Barbara, CA. Problem is, our insurance absolutely will not pay for this guy. Taciturn, who is very knowledgable about insurance, practicality and feasibility of treatment issues, etc due to his USAF work, says that unless we can prove that one person only can do this, no go. So, what we have decided to do is seek another opinion.
When I first worked in the ICU and did after hours recovery, I used to care for orthognathic patients. It was a pretty barbaric procedure back in the day. It is much refined now, and I must admit that the idea of not having to worry about my splint is really attractive. I have a call into my PA to get a second opinion authorized. This will be an interesting journey.
On a different tack, I am going to visit my childhood friend BB who lives in Cooperstown NY, home of the Baseball Hall of Fame. The plane leaves in the am and I'll be gone for a week. The trip is with frequent flyer miles, so it will cost only $10. Sweet. I'll try to blog some from there when I can!
12 comments:
Jaw problems are NO FUN. Thinking and praying for you!
You just left a comment on my blog, so I have come to say hello!
Scorpio and 49, wait that is me! I will be 50 in 11 days on 11/12.
I am sorry to read of this ordeal- goodness it sounds painful and challenging. Then the fun state of affairs of our medical system and your treatment options.
Have fun in Cooperstown, which is so lovely. Go to the Otsego Inn for a visit, the grounds are gorgeous, as is the lobby. We had brunch there in the spring and it was delightful.
Glad to make your blog acquaintance. I see you have MP on your blogroll, as do I.
While I am Catholic, there are a few great Episcopal bloggers on my list like Grandmere Mimi, Padre Mickey and Jan at Yearning for God. I am not sure how Heather got my link, I will go explore!
My blogroll is like me- irreverent but spiritual all at once!
Be well.
Jaw problems are dreadful. I wore a splint for tmj for about five years and then had a baby and stopped. I haven't had the consistent symptoms you have, so I am very sorry for you. Good luck.
Hi there :) you mentioned a guy in Santa Barbera who is apparantly quite good with complex cases. I have a complex case and need the jaw surgery, but I have a bit of time until I need to have the sugery (a couple of months) so I am making sure I look around for a good one. Can you tell me what the doctors name was ? (the one in Santa Barbera). Also, did they mention how much it would cost normally? (excluding any insurance coverage or benefits)
I am always curious as to how much it will cost, I have insurance but of course still not sure if it will cover certain docs. I am seeing someone at UCSF in San Francisco this week, so just seeing if they are good.
Hi Melon, welcome to my blog! William Arnett is the name of the fellow in Santa Barbara. I was told he is expensive, and since this surgery can cost upwards of $50 grand, I'd expect he costs around that. I didn't do any further research as I'm still exploring treatment options.
Good luck as you figure out what to do.
wow, $50,000? I have blue cross PPO so I am hoping it will be covered. I am seeing the team at UCSF right now and they are setting up a consult for me with an oral surgeon very soon. TMJ problems are so awful. I have condylar hyperplasia, started 2 years ago after stopping the pill after having been on it for 11 years since I was 10 years old (I had womens issues). Anyway its when the condylar area starts growing again and pushes the mandible down (so the mandible on one side ends up being longer than the other side)
but anyway as it grows, it pushes and rotates the jaw around and to the oppositre side. as you can imagine, this causes tremendous pain in the tmj on the other side from the pressure. then it mucks up your bite and in the end you dont have the ability to even bite down anymore on any teeth cos your jaw is all twisted and rotated round. its so horrible. they so dugery to correct this but I have been playing the waiting game for 2 years now cos it takes 2 years to stop growing approx and they cant fix it if its still growing. arrgh, the pain!
Having surgery myself in DC this February. You should talk to Dr. Jeffrey Posnick. He is also extremely well regarded in this field. Board certified in both plastic surgery (he is an MD and DDS, not just a DDS like many that perform these procedures), he is the only man to see for complex cases. Although they do participate in insurance, his office is good about helping you get approval, etc.
Hi Anon, welcome to my blog. I no longer live in the DC area or I sure would look this guy up--actually, the name is really familiar.
Best wishes for an optimal outcome for your surgery!
Jaw problems are a horrible and painful thing to go through. Melon, I totally understand where you are coming from. I also have condylar hyperplasia or, as I like to call it, the crooked jaw from hell...
I first started to notice it when I was 21, but just thought my teeth were going crooked with age. I had been having pain in my jaw and upper neck for three years prior to this but never put the two together. I also have osteoarthritis in the side that has grown. The specialist that I saw was befuddled by this because the primary source of pain for me comes from the opposite side. Like you, it is from the pressure on the joint.
None of the doctors that I have seen know much about condylar hyperplasia or have seen it first person. I live in Arizona and we only have a handful of TMJ specialists so this is not all together a strange ignorance.
It's nice to finally get some recommendations for doctors from this blog posting. Melon, what is the difference in your two condyles? I mean the measurement distance? Has just your condyle grown or have other parts of your face, such as the the roof of your mouth, adapted to it? In my case both have changed. Apparently not enough because I still can't bite down on one side. Also, I've been wearing a splint for about a year and a half. I have to for a large portion of the day to help with some of the pain. Sadly though, it's not helping as much as it was when I first got it.
Good luck with your surgery and let me know if Blue Cross Blue Shield covers it.. I also have this insurance.
Hi Levitas :)
thanks so much for your reply. sorry i took so long to reply. i think its just my condyle that has grown,but not sure how much it has grown, I do know that the only ones to know that would be specialists, i mean they do all the measurements etc. i know that my jaw has shifted 3mm from the midline now. I can barely talk and I cant chew at all on either side. its really horrible. I only just moved to the US 3 months ago. was getting sick of the healthcare system in NZ. i had problems starting January 06 and had gotten quite bad by the time October came, but still no one knew what to tell me. I think I have a strong growth push to be honest, I think its more than usually people get because i cant bite down on ANY teeth, i have lost my bite altogether my jaw is just hanging there with no stability to it, i live in liquids. for this reason a splint wouldnt help me, the situation is just too bad, i have to wear one at night though to allow me to get to sleep. i am hoping the specialists at UCSF are good. i havent spoken with the surgeon yet but I think I am going too very soon. maybe you could come to Califorinia for surgery? i will let you know how I go with UCSF.they have a TMJ clinic there and orofacial pain clinic as well as 6 surgeons.so fingers crossed. what other things with this problem limit you? have you been properly evaluated?
Did you do any surgery and did you fix the problem? Who was the oral surgeon in CA?
Hi Anon, welcome. I am still exploring treatment options; if I opt for surgery, it won't happen until sometime in 2009 as I need 12-18 months in braces first.
William Arnett is the surgeon to whom I was referred who practices in Santa Barbara CA. Whether I have surgery or not, I won't see him as my insurance will not pay for him. Also, the orthodontist who wants me to see Dr. Arnett also wants to do a fellowship with Dr. Arnett, so I see a huge red flag here.
If you are wondering about surgery for yourself, best wishes.
Post a Comment