Click click click

This is my little companion.
For the past month wherever I go, the little fella goes.

Call me crazy, but I've been keeping a record of the clicks and cracks of my right TMJ.
On my last medical appointment with Mr. C. I was told that if my current condition does not improve until January, another surgery may be considered to recapture the disc. Straight after that appointment I started paying more attention to my TMJ clicking and crepitus - what kind of clicks it makes, when does it click, how many times it clicks?
If I want to know exactly how my TMJ is evolving (if it is getting better or worse), keeping track of the two main symptoms - pain and clicking - may help me understand. However, pain is very subjective and quite hard to quantify. It depends on a long list of factors, and each person feels it differently. Taking pain medication constantly makes pain quantification even more difficult, as it masks the real symptoms. Quantifying clicks is a lot easier and requires only two things: a tally counter and a notebook. Every time my TMJ clicks, I click the counter. I take note of the number of clicks before the two main meals (lunch and dinner) and in the end of the day, covering the morning, afternoon and evening periods. For the same time intervals I classify my TMJ pain from 1 to 10, according to this table.

Because my disc is anteriorly displaced, the TMJ clicks upon mouth opening. This doesn't mean that whenever I open my mouth, the TMJ clicks. A lot of times it doesn't - it depends how wide I open my mouth, how much pressure I am putting on the TMJ, what I am doing (biting, chewing, swallowing, talking), what I eat, etc. However, taking into account that my days are pretty much the same, following the same routine, soft-food dieting, talking and laughing roughly the same amount each day, the daily sum of clicks should remain around a certain value. It is only based on this assumption that I can compare different days and trace an evolution trend.

There are different kinds of clicks. The ones I get the most only I can hear them, although they are easily felt when pressing a finger on the joint. Louder clicks (or pops) are less frequent, and can be heard by anyone standing up to a few meters away from me. They sound like fingers being cracked or chicken leg bones being broken. The loud clicks produce an immediate relief on my TMJ discomfort, just like a dislocated bone being brought back into place. Unfortunately it is a temporary relief. Crepitus is always present whenever I move the lower jaw, a continuos grating sound - the reason why mouth movement is not smooth and feels like a old wooden door being open. I only count clicks, not crepitus noises.

So far it looks like this:

Fitting a trend to the data, it appears that the amount of clicks is increasing with time. But what is the significance of this? Could my TMJ be gradually getting worse?
As for the pain, I am slowly increasing the amount and strength of the medication. Sometimes it aggravates after a major click - I feel a pulsing electric pain spreading from the TMJ towards the rest of the face and head. Could be another sign of worsening... Could be due to the "great" british weather...
What do you think?

The surgery

Monday, August 13th 2012 - the day of my right TMJ eminectomy.

Contrary to my expectations, I was able to sleep a few hours before the surgery. I guess the tiredness of several sleepless nights took its toll. I woke up at 06:00, had a quick shower and prepared the last few things to take to the hospital. At 07:00, I called the Short Stay Surgical Unit and I was asked to go straight to the University Hospital of Wales (Cardiff) as I was the first on Mr. C.'s list of surgeries for the day. Davide and I arrived at the ward just before 07:30, and shortly after I was called inside, barely having time to properly squeeze Davide in my arms.
The nurse in charge of my case was very nice and kind. As she walked with me to my room, she started explaining what would happen before the surgery. There were some measurements and tests to be taken (temperature, blood pressure, pulse, oxygen levels, urine sample, weight and height), a long questionnaire to be filled, the anaesthesia consultation, a short visit from the one of my surgeons, and the hospital gown to dress, including special socks to prevent blood clogs. Before 08:30 I was picked up from my room to the anaesthesia ward. The anaesthetist was really nice and explained me every single stage of inducing me to sleep intravenously. After this, she would intubate me and give me local anaesthetics for the surgery. "I'll start injecting the general anaesthetics now, ok? Just relax, sweetheart. You can now start dreaming about your next vacations." She smiled and winked her eye. Those were the last words I heard.

I dreamt. I definitely dreamt during surgery. I can't recall the dream, but I woke up with the feeling it had been pleasant. Perhaps I dreamt about our next vacations.

I was awake by a nurse at the recovery room. She called my name and touched my shoulder. As I opened my eyes, she asked me if I knew where I was and what had happened. "I just came out of surgery." "Yes, very good!", she said. I think both of us were surprised how much alert I was. All the area surrounding the right TMJ was hurting, and she gave me a light dose of morphine (5mg) with paracetamol intravenously. She took measurements (temperature, blood pressure, pulse, oxygen levels) at short periods of time to ensure I was well. Since I wasn't nauseated or feeling sick, the drip bag was removed from my left hand. On my right shoulder I noticed the drain, which was well secured with tape and stitches on the head. It was half full of blood and it didn't bother me at all. It actually made me smile - it looked just like a small red chinese lantern, hanging from the right side of my head.
"What's the time, please?", I asked. "11:20, dear." It seemed quite late to me. The surgery was expected to last only one hour, meaning I would be out at around 10:00. This thought made me worry about what might've happened during the surgery. Was it more complicated than what was initially expected? How was the disc? How was the disc? That was my main concern... I asked the nurse if she knew how anything about the surgery, but she was only able to tell me that all went well. She assured me that soon a member of the surgical team would come to check on me, and hopefully give me more information.
As I was responding well and my vital signs were good, I left the recovery room around twenty minutes later. I was moved to a different room from the one I was given before. I was now at the children's surgical unit, but just for a while - I would be moved back to my first room later.
I saw my bag near the bed, reached for my mobile phone and text Davide "I had a really nice nap :)", with a few other details. Davide had called the Short Stay Surgical Unit at 11:00, and just like myself, he was surprised when the nurse informed him that I was still in the operation theatre. However, he was quite happy to know I was out and doing well. I sent him a couple of photos of my head and he made me company through text messages - it was a bit hard for me to talk on the phone. Meanwhile, the pain was increasing and I was given 100mg of tramadol and 1000mg of paracetamol, as the anaesthetics were wearing off. My throat was also horribly sore due to surgery intubation, but there was nothing the nurse could give to help me on this. My mouth also felt extremely dry, so I kept drinking sips of water and hydrating the lips with vaseline.
The inside of the TMJ felt (and it still feels) slightly swollen and spongy, with extra volume between bones. I couldn't close my mouth fully, due to this extra volume. The teeth remained slightly separated and on a clearly different position than before - upper and lower front teeth aligned along the same vertical plane (before the lower teeth were slightly behind the upper). In this new position, if I forced the teeth to touch, only the front teeth did so - the back teeth didn't contact with each other to bite.

The first visit from the surgical team was around 13:00, by two surgeons that I had met before. I was told all went very well. The disc returned to its position above the condyle on its own, and remained so without being necessary to touch it or secure it. The eminence was smoothed really nicely. These were great news! I felt such a relief by knowing they didn't have to touch the disc at all! I was asked to open my mouth as wide as I could. I did my best, but the surgeons were not impressed. According to what I was told, this was certainly related with swelling inside the joint. They were confidant it will improve with time, as right after the eminence removal they were able to open my mouth much wider. The lower jaw shifts slightly to the right side upon mouth opening, as expected and as it was previously. They also asked me to frown and do some other facial expressions to check if I had any nerve paralysis. Despite being painful, I gave them the widest smile I could when they confirmed no nerve damage. They assured me that later in the evening I would get another visit from the team and, depending how well the wound was being drained, I would be discharged in the morning.


Visiting hours were from 17:00 to 21:00, and during this period Davide never left me. He helped me put on my pyjama, he arranged everything in my room area so I could have easy access to my things, he brought my favourite yogurt to eat and straws to drink water, he surprised me with the iPhone cover I feel in love with just a few days before, he got me the sweetest and funniest card ever to make me smile, and he made me feel much better.

At around 18:30, I got the second visit from the surgical team and two intravenous antibiotics were introduced to my medication list, together with an abdominal injection to prevent blood clogs. Due to their thick consistency, the antibiotics had to be diluted on a small bag of saline solution, injected slowly through my left hand tubing, and flushed afterwards with another small drip bag of saline solution.

The nurses came to turn off the lights at around 22:30. However, I couldn't sleep or rest because of the pain. To control it, I had to be given 5mg of morphine, with 100mg tramadol and 1000mg paracetamol, twice during the night. To keep my mind away from the pain, I started taking notes regarding the recovery process. Here is how I described the pain during the first 24 hours post-op:

The pain is completely different from what I have been having in the past year. It seems to me that it is not related to my previous symptoms. The pain is only associated with the wound and inside the joint, where tissues and bone were worked on. It flares up to pain levels of 8+ for short periods from time to time, but it remains mostly a deep 6-7. Pain drugs bring it down to comfortable levels of 3-4 maximum. Few of the stitches sting every now and again, but it is no big deal. I don't feel any of the pain I previously had along the branches and ends of the trigeminal nerve. No facial or head pain, apart from around the wound.

The night went by, and in the morning I had the surgeon's visit prior to discharge. The recovery was going very well. According to what I was told, the pain, the changes in bite and the small clicking noises are natural and shall improve with time. Some other details of the surgery were also explained - the joint capsule wasn't cut to expose the TMJ, as smoothing the eminence was enough to allow normal functioning of the joint, which avoided a much more invasive surgery. These were great news! However, there is a downside to this - the condition of the disc and condyle wasn't checked. We must hope they are healthy enough to maintain the TMJ functioning properly in the future.
My medication was checked once more: co-amoxiclav 500/125mg with penicillin (antibiotic) and 400mg ibuprofen (anti-inflammatory) were prescribed to be taken three times daily for the following five days. As for the pain, I continue taking 8x 50mg tramadol and 8x 500mg paracetamol daily.
After the visit, the drain - my little red chinese lantern - was removed, only with a minor discomfort and bleeding. With the nurse's permission, Davide came in to help me get dressed and pack my things.
We left the hospital after thanking all the nurses for their hard work, their tireless efforts to look after me and make me feel better, and their endless kindness when I needed the most.

Few minutes later, I arrived home for a week of post-op pain, swelling and discomfort.

_________________________________________________________________________________

Thank you all for your kind words and support! They mean more to me than I can describe!

Pre-surgery note

Tomorrow.
Tomorrow is the day.
Tomorrow it will all change.
Tomorrow I will get my life back.

My surgery - the right TMJ eminectomy - is scheduled for tomorrow, at 08:30am.

On August 6th, I received a phone call from the Dental Hospital confirming the new date for my surgery. Since then, it has been extremely hard for me to rest, to sleep, to concentrate or focus on anything. Hence no new posts lately. My apologies.

Two days ago I had the pre-clerking appointment, in which all the pre-op medical exams were done. The surgery and recovery period were explained in detail and discussed once again with Mr. C. and his team of surgeons. After three hours of consultation, I signed the surgery consent form confirming I understand the procedure and was informed of all possible side effects.

The eminectomy procedure is exactly as I described on my post The surgery explained. However, contrary to Dr. P. C.'s* judgement, Mr. C. has no intention of removing the disc and replace it by a graft, even if it shows signs of severe damage. According to Mr. C., a damaged disc still provides a better joint functioning than any graft, and it must be kept for as long as possible.
In Mr. C.'s opinion, removing the eminence is already intervening too much on such complex joint. He will do his best to minimise the surgery's impact on the joint by avoiding touching the disc. However, if during TMJ function testing the disc fails to return to its position above the condyle on its own, Mr. C. will put it manually and secure the disc with a few stitches to avoid further disc anterior displacement. But this procedure is only done as a last resource.
From the discussions we had, Mr. C. seems to be a very sensible surgeon. I am so glad that he avoids disc replacements at all costs.
As for side effects, my lower jaw will shift slightly to the right side upon mouth opening. I already have this offset, and I consider this a minor thing when compared to the pain and discomfort I have to live with at the moment. Because some branches of the trigeminal nerve have to be moved out of the way to have access to the joint, there is also the chance of paralysis of the portions that control cheek and forehead movement. However, this paralysis is only temporary, and the nerve recovers after a few weeks/months. Also, I will leave the surgery theatre with a new hair cut - a lateral head shave, which is quite fashionable these days.

The surgery is planned to last one hour in total. I will stay at the hospital overnight in observation, with a drain placed in front of the ear to remove excessive blood and avoid swelling. I will come back home on the following day (Tuesday, August 14th), for a week of post-op pain and swelling. The only medication I will need to take is tramadol (for the pain), since antibiotics and anti-inflammatories will be injected straight into the joint. According to what I was told, I will be able to open my mouth fully straight after the surgery, but due to the natural swelling, on the first week it will be quite difficult. A week after, I will return to the Dental Hospital to remove the stitches and for an overall check.
Obviously I won't be able to start eating normally straight away. I will be on a liquid diet for the first days, slowly introducing soft foods as I feel the TMJ improving. They are confidant that my pain will reduce significantly, being the post-op pain much more bearable than what I have now.

I am extremely nervous and anxious for tomorrow.
I am sure I have another sleepless night ahead of me.
But be calm, little heart - the end is near.

Tomorrow I will have my life back.

_________________________________________________________________________________

I will do my best to keep you all updated regarding my surgery and during recovery.
Once again, thank you all for your love, kind words, and support.

*Dr. P. C. - the oral-maxillofacial surgeon I went to see for a third opinion in April 2012.

The surgery explained

Eminectomy.

The surgical procedure that will be performed on my right TMJ, date still unknown.

For several months, Davide and I didn't know the name of the surgery. For several months we lived in despair for not knowing exactly what would be done to help me. To help us.

We were only told by my surgeon (Mr. C.) that a small portion of bone would be removed from my right TMJ, in order to create more space for the disc to return to its original position, hopefully on its own. But we didn't know from where this portion of bone would be removed. We were told by an orthodontic dentist (Mr. P. B.) that this procedure wasn't appropriate for my case, and it would only bring more complications to my already complex situation. We were left in the darkness, a groundless empty space of ignorance - alone, not knowing what to do, or where to go, or in what to believe.

And then, in one of his endless nights of TMJ research, Davide came across a surgical technique that fit the description of the procedure I am waiting for - eminectomy. This is it. It must be it!

Orthopaedic orthodontics - part II

March 26th, 2012 @ 14:20:

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.

Alternatives?

Davide and I spent hours and hours, days in a row, searching for anything that would reduce my TMJ pain, an alternative to the excessive use of drugs. An alternative that could give us back a little of our life prior to the arthrocentesis - no pain, no medication side-effects, no frustrations. And especially, an alternative that would allow me to follow my dream (the IODP scientific cruise in Japan) and grab the opportunities that I had been offered recently (summer internship in Norway). We found a chiropractic clinic close to where we live, offering acute and chronic pain relief through the use of neurostimulation technology (InterX therapy). We arranged an appointment for the following week (January 31st, 2012), hoping the chiropractor B. M. would be able to help me.

Usually in B. M.'s clinic, the initial consultation and examination (including X-rays) is one hour long, followed by a second appointment where the findings are reported, and a treatment plan is proposed. However, my initial consultation took almost two hours, and I still had to go back to the clinic on the following day for more physical examinations and X-rays. I was not the first patient with TMJ disorder that B. M. had seen, but I was definitely his worst case.

Big changes

A lot of things can happen in two months. Especially if these are December and January.

The deadline for Davide to submit his PhD thesis was before Christmas. Things were going quite well, but nevertheless there was some pressure, restlessness and anxiety in the air we breathed. Davide's thesis submission was followed by a medley of weird feelings and sensations. I guess it took a while until Davide sunk in this new reality. As for me, I couldn't stop feeling useless. I wanted to be there for him, help him going through this final stage and transition, witness every moment as great accomplishments (as in fact they were!), and express the proud and admiration I feel for him. I did my best. I helped him with everything he asked, but I couldn't help myself from feeling that it wasn't enough, that I should've been doing more for him. I did my best. But there was this thing setting me apart.

How things can go wrong

I was once again nervously awaiting for Mr. C.. He entered the consultation room smiling, and very kindly asked how I was feeling. "Not so good, I'm afraid..."

I explained all the new symptoms I had during the past month, since the right TMJ arthrocentesis. Limited mouth opening (max. 23mm/0.9inch), inability to chew anything solid, more pronounced lower jaw shift to the right side, and the pain. Severe pain. "Please, help me cope with the pain..."

He thought for a few moments before speaking. I took a deep breath and prepared myself for it.

One of two things had happened with the arthrocentesis: either I was taking a little more time than usual to recover from the procedure, or things had gone wrong. In the light of my symptoms, he was inclined to believe it was the second case.