...

It has been some time since my last post.

The past few weeks have been specially difficult for me. My pain is worsening.

Maybe it is due to my habituation to tramadol.

Maybe it is because my TMJ is rapidly deteriorating with time, while I wait for the surgery to fix it.

Maybe I am just too tired both physically and mentally to cope with it.

Maybe it is related to stress and anxiety of having my whole life on hold because of this damned illness.

My whole life on hold because of this damned illness.

Since I started the blog, my days are mostly spent at home, a sad routine of bed-wc-desk-window-sofa-bed. I had to suspend my PhD research. I am unable to work. 

I have failed once more. And this time worse than ever.

I started the blog "not to feel lost and alone, as writing always made me feel better. Writing makes it easier for me to accept reality." It turns out that it doesn't.

Being aware of more (oh much more!) people out there suffering as I am, some even more than me!, has made me a sadder, more depressed person. I have received messages I am unable to read them fully - words are too painful, and I am sure they don't describe a fraction of the suffering behind them. I am unable to read them fully as I can't hold myself from crying. I cry and I grieve for this person's misery and my own. I haven't replied to these messages yet.

My body feels pain. My mind thinks pain. Every day, hour, minute and second. My whole life is pain.

I need a break.

As I can't have a break from my disorder and physical pain, I have decided to stop writing my TMJ diaries for a while, a few days only. Just enough to breath a little of the life outside my home walls and my own walls.

Tomorrow I am travelling to Paris to spend a few days with my dearest friend T.. I will continue my story when I get back home, hopefully all freshened up! And if you are waiting for my response, you are not forgotten - I am simply gathering words and enough courage to write back to you. I promise I will.

Until then, I leave you all with a smile :)

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.

Orthopaedic orthodontics - part I

As chiropractics proved to be unsuccessful to reduce my TMJ pain, I followed my second chiropractor's advice, and phoned the dental practice of Mr. P. B. to book a consultation. The receptionist was very kind, and promptly arranged an appointment for the following week. She explained all the procedures done on the first consultation, and just before hanging up the phone she added "By the way, the first consultation will be £240; is that ok?"

Ana - I'm sorry, can you please repeat that?

Receptionist - The first consultation will be two hundred and forty pounds.

Ana - WHAT?

Receptionist, now on a really dry tone - Two hundred and forty.

*awkward silence*

Ana, swallowing the shock - Oh-kay... That was a bit unexpected... Alright then. Err... See you next week.

During February and the first weeks of March, Davide and I had spent almost five hundred pounds (£500) in all my chiropractic treatments and appointments. Taking into account that since Davide submitted his PhD thesis (December 2011) our only monthly income was my scholarship, it was through great effort that that money was spent. Now, for a single appointment I was being asked the whopping sum of two hundred and forty pounds. "Oh boy... You better fix me!"

Chiropractics

My chiropractor - B. M. - was doing everything he could to help me. He is by far the sweetest and most dedicated practitioner I have encountered during my TMJ journey. I owe him a lot.

B. M. proposed a twelve-treatment plan to begin with. According to my response to this treatment, he would either continue with it or refer me to a more experienced chiropractor in cranial disorders, with whom he was already discussing my difficult case. My treatments would have a short time gap between them, so that my body would be on constant "pressure" to heal. I would visit the clinic every Monday, Wednesday and Friday for the following weeks.

The first thing to do was to stabilise my pelvis, increase my general core strength and release some of the tension on the right side of my body. This stage went relatively well and took only a couple of treatments. The aim was to concentrate my pain around the right TMJ, instead of having it affecting the entire right side of my head, neck, right shoulder and back. This goal was partially accomplished - I noticed a considerable reduction of the pain on my shoulder and back, but from the neck upwards it remained the same. There was this really really annoying thing on my neck posture that was making things extremely difficult for the treatment to be effective.

Easy DIY

Having a really really bad pain day...

I wish there would be an easy way to fix this.

For me. For all of us affected by this overwhelming disorder.

Pain management...

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.

TMJ MRI scans

Magnetic resonance imaging (MRI) is a radiology technique used to visualise in detail internal structures of the body. MRI scanners produce strong magnetic fields and radio waves that interact with atoms that make up certain substances, making them detectable by the scanner. This type of scan is especially used for soft tissue imaging, being quite effective to diagnose health conditions that affect organs, muscle tissues, bones and joints.

So far, I had three MRI scans in order to check the condition of my TMJs. The first one was back in 2005, requested by my first oral-maxillofacial surgeon in Portugal. The other TMJ MRIs were done in November 2010 and November 2011, both at Cardiff University Hospital under Mr. C.'s care.

Fortunately, I didn't have to pay of any of these. The health insurance I had in Portugal covered the first MRI expenses. The last two were done free of charge, thanks to the welsh public health system. The waiting time can considerably long through the NHS (National Health Service). However, depending on the severity of the health condition in question, it might be preferable to wait a few months than to pay the full cost of the scan.  MRIs are really expensive, generally priced above £200 (UK).

Although a MRI is a safe and harmless procedure, it may be quite uncomfortable, and it is certainly painful for people affected by TMJ disorders. Therefore, it is best to be prepared and to know what to expect beforehand.