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!

As things stand...

My surgery has been canceled.

It was scheduled for July 16th, last Monday. Because of the short notice we were given, our plans for this week were altered: Davide's PhD graduation ceremony was canceled, my mom changed her vacations and flew all the way from Portugal to be here.

I became so anxious about the surgery I couldn't sleep at all. I was extremely nervous, constantly trembling and feeling sick. I can't describe the whole state of uneasiness, tension, apprehension and worry I was in.

And then, in the early morning of July 11th, I received another phone call from the Dental Hospital, this time cancelling the surgery. I was told that an urgent case had came up, and unfortunately it had been scheduled for the time slot I was given before. I felt like being hit by a train. In shock, I wasn't able to think of an answer or in what to say; "okay..." was the only thing that came out.

Davide was leaving to pick up his parents at the airport, who came to visit us for a week. I stayed at home, digesting on my own what just happened, how our lives were suddenly turned upside down once more. In anger, I called the hospital and demanded a date for my surgery - it was the least they could do for me. Please, give me another date for my surgery. I need to know when this suffering will end. The lady with whom I had spoken earlier told me it had to be my surgeon (Mr. C.) re-scheduling the surgery; she would try to get in touch with him and promised to call me later with a date.

The day went by and she didn't call. On the following day, first thing in the morning, I called the hospital. The same lady told me that unfortunately she wouldn't be able to speak with Mr. C. to re-scheduled my surgery until the following Wednesday (July 18th), as he was on leave.

So... If my surgeon is on leave until Wednesday (July 18th), what happened to the urgent case scheduled for Monday (July 16th), the day my surgery was due? Am I missing something or is this a really bad joke?...

I understand my surgeon is only human. And, like all of us in case of need, he has the right to his days of leave, whether because he is unwell, or to enjoy a well deserved rest, or to give assistance to a family member. I do understand and accept it without questioning.

However, I was given two completely different and incompatible excuses by the same person.

On Wednesday at lunch time, I called the hospital. No news - until then they haven't been able to reach Mr. C. to discuss my case; hopefully by the end of the day I would have a date. I called the hospital again at 16h30, just before closing time. I didn't even need to identify myself, as they knew already who was calling. "I'm sorry Ana, but we haven't been able to speak with Mr. C. yet. Rest assured we will call you as soon as we have a date for you. However, most probably your surgery will be a few good weeks from now." A few good weeks from now...

I did my best to enjoy the days spent with Davide, his parents and my mom. I did my best to smile at Davide's graduation, although I couldn't stop thinking it should be the last day of my suffering. I am still doing my best to control the tears, and not to let the sadness and despair take over, despite being in more pain than usual.

I still don't have a date for my surgery. I still haven't received any phone call from the hospital. But I keep hoping for the day when my phone rings again.

_________________________________________________________________________________

I have promised a post describing the details of my future surgery - the eminectomy -, and finalising my story (until the present date). It is half written, but I have stopped writing after receiving the news of the surgery cancelation. I will soon finish and publish it.

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

Back to reality

Hello again! I am back. :)

I came back from Paris a week ago. I had a wonderful time with my dearest friend T. We have been very closed friends since we were little. Despite the distance, despite the different paths our lives have taken us, and long periods of absence, nothing has changed between us - our friendship, our love for each other remains the same. She is my confidant. She conforts me and she is always there for me. Most importantly, she makes me smile.

T., merci pour ces jours merveilleux, pour me faire sourire, pour ton amour et ta amitié.

...

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.