We were back to Mr. P. B.'s dental practice for my second consultation. "Any changes, any improvement?" No, not really. Despite feeling the muscles surrounding my right TMJ slightly more relaxed (as it was expected from taking diazepam), I didn't notice any improvement or worsening regarding my pain or jaw function. I stopped taking the amitriptyline completely due to the awful way it affected my mental health (delusions, hearing strange noises and voices in my head), but I followed Mr. P. B.'s instructions on wearing the hard splint.
However, Mr. P. B. was hoping that the splint had produced changes on my bite, and so I was asked to lay on the dental chair to check for these. After a few minutes of torture (open mouth "wide", close mouth, bite hard, tap teeth...), it was confirmed that nothing had changed. But Mr. P. B. had something else in mind - he had prepared a soft paste on a special appliance that hopefully would fit into my mouth to produce a full mould. And so the torture continued... Once my mouth was full of "play dough", I had to bite as hard as I could until the paste was fully solidified. He actually "helped" me on this, by pressuring my lower jaw against my upper teeth. The worse came when the paste became solid - I couldn't move my lower jaw for the paste to be removed. It was as if my whole mouth was cemented, upper and lower teeth glued against each other. I was in great pain and almost in panic. After a lot of effort and with his help, the mould was finally released from my teeth. I had never suffered this much on a dental chair.
"I don't know your financial situation or if you have an insurance that will cover it... but are you willing to go to Florida (US) to see him?"
In my mind I was pulling my hair and screaming "WHAT?!". And as I looked to Davide (who was seating on a chair behind Mr. P. B.), I saw his eyes popping out and his jaw hitting the ground. Mr. P. B. continued:
"This may seem a bit overwhelming, but I assure you he is the only person able to help you. We will do our best here to help you conservatively. However, your case is very complex, and I agree it can only be fixed surgically. Considering surgery, I think it is best to have my friend's opinion, and maybe have it done by him. I will get in touch with him, explain your case and then we'll work from there, ok?"
Davide and I were speechless. We didn't know what to say, and I guess our shocked silence was taken as a sign of agreement. We had completely forgot about all the other things we wanted to discuss with Mr. P. B., as our minds were now filled with even more questions, doubts and concerns. I felt hopeless for the first time in all these years of TMJ disorder suffering.
Once more we left Mr. P. B.'s dental practice with an appointment scheduled for April 13th, instructions to continue with the medication and hard splint therapy, one hundred and twenty pounds (£120) poorer, and in utter despair.
I didn't know what to do and in what to believe anymore. I was told that the surgery planed by Mr. C. (my surgeon) wasn't for my case; and surely I had a previous surgery that had gone wrong with him. I couldn't trust him, could I?
On the other hand, by following Mr. P. B.'s opinion, we would clearly spend a humongous amount of money - something we couldn't afford. And for some reason, Davide and I had the feeling that Mr. P. B. might've been making my case much more complex than it actually is, for his own and his US friend advantage/benefit.
Desperate, I sought help through the TMJ Hope facebook page. I summarised my situation and my fears, and soon it became clear that it was best to get a third opinion. I could only think of one person, the only one I knew I could trust - the oral-maxillofacial surgeon that first diagnosed my TMJ disorder, back in 2005. My grandparent's 50th wedding anniversary would be soon, so I took this opportunity of travelling to Portugal and arranged a consultation with surgeon Dr. V..
On March 29th, I received an email from Mr. P. B.. He had discussed my case with one of his colleagues in Kentucky (US). He proposed a plan of action based on his colleague's reply, which was also included in the email I received. His advice was:
- To do an Auriculotemporal nerve anaesthesia to absolutely confirm that the problem is intracapsular (within the joint) and not muscular, as muscle pain does not require surgery. If this procedure would produce an almost complete pain relief, than it would confirm that my problem is intracapsular. If not, the problem should be treated as muscular.My thoughts on this: I gave Mr. P. B. a copy of my lastest MRI scan report, stating clearly that I have an internal derangement of the right TMJ (anterior disc displacement without reduction, bone structure alterations - flattened condyle evidently caused by excessive wear and damage). All my symptoms are in agreement with this diagnose. Wasn't this enough to prove that it is in fact an intracapsular disorder? In my opinion, the auriculotemporal nerve anasthesia wouldn't rule out anything. The whole right side of my head, neck and back are constantly in pain due to the overall inflammation of the TMJ. For me it is quite obvious that my whole pain wouldn't simply disappear by injecting anaesthesia into the auriculotemporal nerve, which could lead to the wrong conclusion that it is a muscular disorder. Wouldn't you agree?
- Do not do surgery without allowing treatment to encourage healing. Mr. P. B.'s colleague states: "encourage her to hang in there for a number of more weeks (...). I don't care that much of the disc is out of place because patients still heal and adapt."My thoughts on this: He doesn't care, but I do. I am clearly not healing or adapting to the fact of having the disc out of place. In fact, I am getting much worse with time.
- To change the medication to Ibuprofen immediately, and discontinue tramadol. I should start taking 600mg doses of ibuprofen with soft meals, three times daily.My thoughts on this, and my actual reply: I won't replace tramadol for ibuprofen. As I had mentioned previously, I have tried treatments with anti-inflammatory drugs before, much stronger than ibuprofen (including naproxen 250mg), with no improvements regarding the pain or the inflammation. The only thing I got from taking such anti-inflammatory drugs was a pretty bad gastritis, which at the time I was still recovering. Moreover, I wouldn't be able to cope with my severe pain only on ibuprofen. If by taking large doses of tramadol I still feel pain, I can't even imagine how I would be only on ibuprofen. What an absurd suggestion!
- To start cognitive awareness immediately, which helps to promote healing of the joint. I should make sure that my teeth are not clenched together at all during the day. He suggested this is best accomplished by setting the alarm on the phone to ring every hour, and to make sure at that moment the teeth are apart and to blow air between them. Wearing the appliance would also help.My thoughts on this: I completely agree with this point. I think that anyone who clenches or bruxes should try cognitive awareness exercises to encourage muscle relaxation. I am since then doing the best I can not to clench my teeth during the day. I think I am managing this quite well, although I don't notice any pain relief.
Furthermore, Mr. P. B.'s colleague said that if surgery was to be considered, a bone shave should not be the surgery of choose, as it may lead to more degeneration if done on the condyle. He suggested "perhaps some soft tissue repair and at worse, take the disc out". Take the disc out? Was this really being considered as an alternative to my surgery? As per my email reply, I have serious concerns on disc removal as an alternative, as we have read many testimonials of patients/scientific articles stating that removed discs caused severe pain afterwards and also led to bone degeneration.
I didn't received any response to my email from Mr. P. B.. I was quite dissatisfied and fretful with how my condition was being dealt. I concluded it was best to wait for the opinion of the portuguese surgeon, and according to this decide what to do next.
Thank you for sharing your story on your orthopaedic orthodontic appointments. I have read both parts 1 and 2 of your blog on your orthopaedic orthodontic treatment.
ReplyDeleteI have also been having treatment for my TMJD with an orthopaedic orthodontist in the UK, and it sounds very obvious from what you have written that the dentists are very different in the treatment approach, as what I have had done and been told sounds to be significantly different.
The splint which I had was a lower splint, not an upper splint. Mine only covered my molars and premolars and not my front teeth so it enables the lower jaw to reposition itself further forward while wearing it as the lower jaw is no longer being held back by the way the front teeth meet. I was instructed to wear my splint 24/7, only removing it to clean my teeth and while I had it removed, not to bite my teeth together. A splint has to be worn 24/7 to enable the TMJ to heal and the discs to reposition otherwise every time you remove and bite together in the old bite position any healing will be undone.
It sounds as though your dentist was hoping for your jaw to reposition itself with the splint, but from looking at the design of it, it doesn’t look like it would allow the jaw to reposition very well, as it looks as though the covering over the front teeth would prevent it from allowing the lower jaw to move further forward.
My dentist asked me not to take any Ibuprofen because he said it worsens arthritis in the joint, and prevents the bone from healing. Instead he suggested taking a herb called Cat’s Claw to help with any pain caused by inflammation.
My dentist is most unlikely to recommend any TMJ surgery. I don’t believe that he would have suggested surgery to you at that stage like P.B. has done. If the splint didn’t reposition your jaw as your dentist had been hoping for, perhaps there is something wrong with the splint, and doesn’t imply that you need surgery.
Keren
Thank you for your comment.
DeleteIt doesn't surprise me at all the fact that different approaches were taken for our cases, even if we were being seen by the same dentist. First of all, do we have the same TMJ problem? If not, why should the treatment be the same? Each case is different, and require different techniques.
My hard split wasn't made with the purpose of disc repositioning. Perhaps I wasn't very clear on my first post (part I) - my hard splint was meant to prevent my bruxism and clenching. I think I mentioned the fact that I was given soft splints for my bruxism before, and that this dentist explained these were not appropriate for my bruxism. By preventing bruxism and clenching, my muscles would not be in so much tension, which could bring some improvement to my pain. That is why I don't need to wear the splint 24/7 and its design is different from yours.
Unfortunately my right TMJ shows signs of being in a quite advance stage of deterioration. Not only my disc is anteriorly displaced, but also bone structure has been altered during all these years. I have seen a lot of people reporting their disc is anteriorly displaced but fortunately their pain is manageable. Considering the amount of pain I have to live with (I am only coping it by taking huge amounts of tramadol, not simple pain drugs or herbs), the dentist had to be pretty mad not to suggest a faster solution, i.e. surgery. If there was another way of fixing my problem, believe me I would take it, as my life has been ruined by a TMJ surgery. But unfortunately there isn't. And that is the opinion of all the specialists I have seen. I will talk about this on my next post.
I do appreciate that our TMJ problems are not exactly the same, so even the same dentist would treat different problems differently. However, I myself have seen about 4 dentists in the UK who have a special interest in treating the TMJ for opinions, and each of them suggested a different approach for diagnosing what was wrong and for treating me.
DeleteAna, in your blog you wrote, “Mr. C. explained to us that the best way to help me was through another surgery, this time exposing the TMJ. During this procedure, he will remove/shave a small amount of bone in order to create more space inside my right TMJ, so that the disc may return to its original position. He clarified that the main goal of this surgery is to correct bone structure and not to reposition the disc - the disc may be able to be repositioned on its own, just by creating extra space inside the joint. In this way, he won't be compromising the joint and nerves so much. However, if he can have access to the disc, he will try to put it back to its proper place.”
The fact they suggest to shave down bone to create more space in the joint, to allow more room for the disc, suggests that they think your condyle is too high up and too far back within the joint, and doesn’t give sufficient space for the disc. Making extra space in the joint is what 24/7 splints are also supposed to do, as they alter the position of the condyle, making more space within the joint to allow the discs to possibly recapture.
You are right by saying that a splint of that kind could perhaps create more space inside the joint for the disc to return to its original position. I do agree with you, and it was with that on my mind that I first saw this dentist - I was hoping something like that would help me. You can imagine how frustrated I felt after being told once again that the only way for me was through surgery, however not the one my surgeon in Cardiff was planning. So I went for another opinion (which I will write on my next post, hopefully today), and I was told the same - surgery...
DeleteHowever, only after this third opinion I understood exactly what kind of surgery and bone removal is right for me. I am trying to tell my story in the exact order as things happened. That's why I haven't been very clear about the procedure. What I wrote was exactly what I knew at that time - "remove/shave a small amount of bone in order to create more space inside my right TMJ". Only later I was told which kind of bone is to be shaved, and it is not the condyle. But I promise I will explain it all on my next post, ok?
You say you saw four different dentists, and that they all told you a different thing regarding your diagnose and treatment. wow! I would go mad if that happened to me! At least all the different specialists I saw seemed to agree that my solution would be through surgery. Were you only seen by dentists or have you sough the opinion of an oral-maxillofacial surgeon?
Hi Ana,
ReplyDeleteI've been reading your blog for a while now and only just realised every time I go to comment something my wordpress doesn't allow it but doesn't actually alert me of this. Anyhow that is somewhat irrelevant.
I'm a 20 year old Australian and started having severe TMJ problems since July of last year. 'TMJ problems' doesn't really quite cut it as a description as I'm sure you're aware. In the past year I've toured physios, myotherapiss, dentists, orofacial pain specialists, neurologists, neurosurgeons and maxillofacial surgeons to name a few. Both my TMJ discs are deformed and dislocated one anterior and one posterior. It has become extremely prevalent that surgery alone has a very little chance of fixing the problem. That being said the only solution rests on fixing the structural components and attempting to fix the muscles simultaneously. The answer of a large amount of specialists I've seen have simply beeny 'oh it's just your muscles' and then handing me away as my case is too 'complex'. I also have a deviated jaw similar to yours I've seen in pictures.
The majority of what I've said hasn't at all been helpful yet I'm extremely interested to know what Surgeon it was in Florida that your surgeon recommended. I have a feeling it might be the same one I've heard about in my own research.
Paul