Yet another MRI scan

Today is a big day for me - I'm having my fourth MRI scan to check the current condition of both TMJs.
This is the third MRI scan I have at Cardiff University Hospital, under the care of Mr. C..
I'm both:
- excited, because soon we'll know exactly how my TMJ condition is progressing and what is causing this rapid joint deterioration; and
- apprehensive, because TMJ MRI scans are so uncomfortable and painful, especially the second part when one has to be completely still, mouth locked open with a syringe between the teeth.

On a previous post (TMJ MRI scans, 2 June 2012), I described my experiences throughout the MRI scans I had. This time, I am sharing with you the information I was sent by the hospital, prior to this scan. It includes a 'MRI patient information' leaflet and a questionnaire to fill. I hope you can read all the information clearly.

I have answered 'yes' to a few items of the questionnaire. I rang the Radiology Department, but they said it was fine for me to get the MRI - my last stomach endoscopy and blood tests were done more than 6 weeks ago. Regarding my tattoos, I was told the tattooed areas could warm up a little bit due to the metals present in the ink, but it wouldn't be a problem.

I've got to go now - having the MRI in less than an hour! :)

Inflammation & cholesterol

We spent Christmas holidays with our families, and we had the most wonderful time!

I took the opportunity to visit our family doctor (GP) who requested a few exams, just as regular check-up. These included blood tests which came back normal, apart from the cholesterol results...

Total cholesterol should not go over 190 mg/dl. Mine is an astonishing 267 mg/dl!

It is even higher than both my mother's and grandmother's cholesterol, who take regular medication to reduce and control it. This was quite of a shock, especially considering my diet. I don't eat much, and my diet consists mostly of vegetables, fruit, rice, pasta and cereals, with very little fat (only olive oil, which is considered healthy). We have meat or fish once or twice a week, and they are either grilled or stewed. I seldom eat bread or cake, and I don't appreciate pastry creams/ganaches (the simpler the cake, the better). Sporadically we treat ourselves with a dessert, such as ice-cream, tiramisu or cheesecake. I rarely snack, I do not eat fried foods, and I don't even like cheese. I do love chocolate, but I don't have it everyday. And until very recently I was eating only soups and milkshakes!
Clearly my stupidly high cholesterol does not reflect my diet.

I haven't had the opportunity to show the blood test results to my family doctor (in Portugal) or my GP (in Cardiff). But I asked B. (my wise chiropractor) his opinion on my cholesterol values. He was not surprised.
Our liver produces excess cholesterol in response to inflammatory processes. It is a natural defence mechanism of our bodies to fight inflammation and promote healing. My body has been fighting the inflammation surrounding my TMJ for years now - no wonder my cholesterol is high!
B. recommended not to take any medication to reduce my cholesterol, as it may decrease my defences against the inflammation and consequently worsen my symptoms.
In any case, I will show the blood test results to my GP and ask for her advice.

You can read more about the link between inflammation and high cholesterol here.

New year, new symptoms, new diagnosis?

Most of us start a new year with our hearts filled with hope of better times, with resolutions and promisses of doing whatever is in our reach to improve the things that were not that good in the previous year. I am no exception.

But, what can be done regarding those things we have no control?...

Up until now, my new year days haven't been any different from the old ones: I do my best to work at least a good couple of hours per day on my PhD studies, I rest as much as I can, I spend most days at home and rarely venture outside (overcast and cold weather increase my TMJ pain and discomfort), and I am always looking forward to the evenings when Davide and I can enjoy each other's company.

As for my TMJ symptoms, I didn't have any improvement since my last post. If there was a change, it was for slightly worse. So you can imagine how anxious and excited I was to have my oral-maxillofacial surgery appointment last Friday. I was hoping Mr. C. (my surgeon) would decide to go for another surgery to recapture my right disc, alleviating all the pain and discomfort on my entire jaw and both TMJs. Above all, with this surgery I was hoping to get my life back.

Davide and I went to the University Dental Hospital of Wales (Cardiff) mentally prepared for both a positive answer ("yes, let's do the surgery!") and a less favourable solution ("perhaps it is best to wait a little more time..."). But we didn't prepare ourselves for what was to come...

As always, Mr. C. was the nicest and kindest person throughout the appointment. Although we could see he was having a really busy day, he was with us all the time necessary to go through my complains,  check the function of both TMJs, review my previous two MRI scans and their reports, think, re-think and evaluate my current condition, and then answer all our questions!

The appointment started with me explaining how much worse I was feeling since the last consultation (in September 2012), with considerable increase of pain and discomfort on the right TMJ, loud clicks, pops and snaps. But the new symptoms were what concerned Mr. C. the most: the constant awful crepitus and grating of my right TMJ, and the onset of similar manifestations on the left side. He was not happy with my progress. In his words, "it sounds and feels really bad, as if you're having bone-on-bone". Clearly my right disc is still anteriorly displaced, but now I show signs of significant bone deterioration. On previous MRI scan reports it was mentioned some alteration of the bone signal which could suggest some bone wear and tear, together with flattening of the condyle head. However, at the time I didn't have this kind of crepitus and grating, which is evidence of joint degeneration.

I asked if the recent symptoms on the left TMJ could be related to a jaw imbalance caused by removing the articular eminence on the right side (maintaining the left one). Mr. C. said it was a nice theory and it made sense, but he wasn't convinced it was the cause for them.

Looking desolate, Mr. C. said it he was about to do something he never did before: requesting a third MRI scan for someone. He added it was the first time he saw this kind of symptom progression to worse in such short period of time. Both my TMJs need to be re-scanned in order to check their current condition. With new scan results, Mr. C. can evaluate what is exactly going on and what may be causing this deterioration. Although it is still very early to jump into conclusions (especially not having any recent scan to support), Mr. C. said there is the possibility of having a joint degenerating disorder, such as rheumatoid arthritis. After the results of the new MRI scan, Mr. C. may ask for other exams to confirm or exclude this possibility, and plan a surgery accordingly.

I am back on a waiting list for a date to do the MRI scan.

And so, I have a new wish for 2013: not to have rheumatoid arthritis (or something similarly bad).

The sound of a silent illness

Turn your volume up to hear my TMJ noises.

First you can hear my left TMJ clicking, which is a symptom I developed quite recently (along with pain)*. Then, the crepitus and minor clicks produced by my right TMJ - my everyday soundtrack...
Unfortunately I haven't been able to record a major click yet, one of those that can be heard several meters/feet apart.

*I wonder if removing the right articular eminence caused an overall jaw imbalance that is affecting my left side now...

...

very bad weather = very bad pain + worsening of (tmj discomfort + blocked ear + tinnitus + clicking) =
                                  = no sleep + no rest + no work...

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?

Recovering

In the past months I haven't been the best blogger, or the best company, or the best person to reply to any of the lovely and supportive messages I have been receiving... Shame on me...
However, I have a good excuse - I have been "too busy" recovering! HA!

I did my best to maintain a small diary in which I wrote everything regarding my post-op experience. I had great expectations about this little fella - it would be the most extensive and complete post-op report of all times!...
But three days after... I surrendered to the tiredness, general drowsiness, and lack of inspiration and willingness to do anything at all that is so common (at least I hope so!) after surgery. *sigh*

Have I ever mentioned that despite being the best guy ever, Davide is also a bit hypochondriac and a chronic worrier? Well, I found out that all his hourly questions of "how are you feeling? how's the pain? where is the pain? how much is the pain? why are you making that face - is it hurting?" were only to fill in his own diary. Oh, bless him! He's the best! ♥

Post-op day 1

The past months can be summarised by a single word: tough. In every way...

I arrived home from the hospital at around 10:30. I felt lost at home. It felt like I had been away for weeks, although little more than 24 hours had passed. I was feeling quite well, as the pain was being controlled by the medication, and I was surprisingly alert. The last thing I wanted to do was spending the day in bed, resting and being bored to death. But that was exactly how I spent that day, and the ones after.

The pain kicked in on day 2. The whole right side of my head was aching terribly - some of the severest pains I ever had to endure. It remained like this for the following three days, and I was only able to cope thanks to my good old friend tramadol (8x 50mg daily) and strong ibuprofen (3x 400mg daily), combined with paracetamol. Slowly the pain started to ease, but TMJ discomfort and swelling increased significantly. The swelling was pushing the lower jaw forward (creating a slight underbite) and to the left, affecting my bite. I could barely open my mouth (12mm maximum), it interfered with my speech, and swallowing was very hard.

Post-op day 5

A week after the surgery I felt a lot better. In fact, for the first time in 380 days I felt I didn't need to take pain drugs. And so I didn't. That was the stupidest thing I have ever done.
Being addicted to tramadol, my body didn't react very well when I decided not to take it. Especially taking into account that only a week had past since the surgery... In the end of the day, my body started to shut down. I was unable to stand, my speech was incoherent, I was shivering, soaked in sweat, and extremely sick. Soon I was throwing up all the contents of my stomach and much more... Needless to say, the TMJ pain came back must worse, and I was in bed again for the next couple of days, taking each pill as a bless.
On the ninth day after surgery the stitches were removed, and it was such a relief! With all the swelling, they became really uncomfortable as if my face skin was being pulled backwards. Although the stitches stung from time to time, the wound and the tissues surrounding it were completely numb. As time passes, I am slowly recovering some of the sensations around the scar, but the skin is still pretty much numb to the touch. The scar however has healed beautifully! It is almost impossible to notice it.

Can you see it?

A month after surgery, the pain had decreased, the swelling was gone, my mouth opening increased slightly, and I was eating normally again (although mostly soft foods). It was time to reduce my tramadol intake - this time gradually. This proved to be quite a struggle. It has been a long and stressful process, and I feel it may have slowed down the whole recovery, as it is one more thing my body has to cope with, heal and adapt. Currently I am taking only 50mg of tramadol a day. I wish I could decrease the dosage even further and eventually withdraw it completely, but unfortunately it is impossible at the moment...

Six weeks after the eminectomy, a consultation with my surgeon (Mr. C.) confirmed my fears - the disc is still anteriorly displaced. The diagnosis improved from without reduction to with reduction (explained here), but the disc is still out of place. Hence the constant pain I still feel (although far more tolerable and manageable than before), the extreme discomfort inside the TMJ (I feel as if my lower jaw is out of place, not fitting properly on the right side), and the pretty bad and annoying TMJ clicking and crepitus. If my current condition does not improve until my next medical appointment (January 2013), another surgery may be considered to recapture the disc. It is frustrating to think that all could've been solved if my surgeon wasn't so conservative during the eminectomy, if only he had opened the joint capsule to check the disc. But that wasn't the goal of this surgery. Despite it all,  I must say the eminectomy improved my condition significantly, and that for me was a great achievement!

I still feel pain and still take pain medication. In bad weather days I stay at home, as they make me feel terribly. I get tired very easily and can't do anything physically demanding. I can't bite an apple or chew a steak.
But I'm back to work and I ate pizza just the other day. :)