Tuesday, 23 October 2012

My Arthritis Story

This post ended up being much longer than I expected.  I was having a bad pain day and used this as a bit of therapy!  Also - I've posted a picture of a post surgery scar, so if that makes you squeamish you might want to avert your eyes.  Feel free to leave me a comment with your experiences, or if you want me to go into anything else in any detail.




I remember the exact moment I knew something not quite right was going on in my body.  I stepped off a bus on my way home from uni and I was about ready to snap.  I'd had a horrible headache all day, except it was more than a headache and...different.  Instead of the pain being in my forehead and behind my eyes like a normal headache, the pain was in my entire head - every bone in my face felt tender. I'd been having similar pain, but of a lesser intensity for a few weeks, but being busy with uni I was trying my best to ignore it.

This day, as I got off the bus, I headed straight into the shopping centre to find some paracetamol as this was not the kind of thing I carried around with me (those were the days!).  After a few weeks of this I noticed that the pain seemed to be localising around my jaw area, and was worsened by eating hard or chewy foods.  

I eventually decided that this was not normal and was not going away by itself and made an appointment to see my GP.  Let's call the doctor Dr Twatface.  I explained my symptoms to Dr Twatface who without performing any examination whatsoever told me to go away and take paracetamol.  I explained I had already been doing this for the last month or so, but Dr Twatface insisted there was nothing wrong, as I was "too young" for anything to be wrong.  I was 21 at the time.

Being the stubborn person that I am, I went away and googled my symptoms.  I know, I know, it's never wise to google your symptoms but I knew Dr Twatface was wrong and wanted to be able to go back, research in hand and prove him wrong.  My googling pointed me towards something being wrong with my Temperomandibular Joints (TMJ for short).
The lovely illustration above shows where the TMJ is.  So... I made another appointment to see Dr Twatface, took my research along and decided I wasn't leaving until I had a referral to the local Dental Hospital.  Dr Twatface took me marginally more seriously and actually decided to examine me this time.  He felt my TMJ and asked me to open and close my mouth.  I think the crunching sounds my jaw made could probably have been heard at the other end of the surgery but Dr Twatface still insisted that it would 'resolve itself'.  Dr Twatface and I then went on to have (the first of many - but that's a different story) an argument and after what felt like forever and me being in tears, he eventually agreed to refer me to the Dental Hospital, but did it begrudgingly, barking on my way out that they "wouldn't be able to do anything for me".

Six months passed and I finally got my appointment letter through from the Dental Hospital.  In the meantime Dr Twatface continued his personal vendetta against me and refused to prescribe me anything for the pain.

I remember sitting in the Dental Hospital waiting room nearly crying because I'd been in pain all day and I remember thinking that the lights seemed ridiculously bright and harsh.  My name got called and I went in to the treatment room to be greeted by a dental surgeon and a nurse.  They listened to me.  They actually listened to me and didn't treat me like I was making it up.  They examined me, heard the crunching and agreed something was wrong.  After taking one look at my teeth the dentist asked if I clenched my jaw a lot. I honestly wasn't aware of doing it, but apparently had been doing it in my sleep and had already worn away quite a lot of tooth.  They took impressions of my mouth to make me a custom mouth guard and arranged for X-Rays to be taken of my jaw.

I came back to the Dental Hospital for my results and mouth guard a few week's later, which was a few days after my 22nd birthday.  No I don't have some bizarre memory, I checked the date on the bottom of the impression of my teeth that they took and I have for some reason kept for five years.  It resides in my bathroom and looks like this:

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Okay so, after getting my mouth guard fitted by the nurse, the dentist comes in with my results.  He sits down looking very flustered and tells me when he got the results in he called the radiologist to double check they had definitely sent the right results.  I had arthritis.  Osteoarthritis.  In both sides.  The dentist said he had never seen this in someone my age, and had actually never seen such bad degeneration... ever.  It turned out that Dr Twatface was right in the end - the Dental Hospital couldn't do anything for me, but not because there was nothing wrong.

I was then referred to a Maxillo-Facial Surgeon (or Max Fax for the cool kids like me).  I first saw my surgeon when I was 22 and I'm still seeing him regularly - 4 years later.  In that time, we have tried everything to get a lid on the pain and to try to slow down the degeneration.

We've tried ALL the drugs - cocodamol, tramadol, dihydrocodeine, pregabalin, gabapentin, nortriptyline, ibuprofen, diclofenac.  I'm probably forgetting some.  These have had varying degrees of success.

We've tried alternative therapies - TENS machine and acupuncture.  I also paid for chiropractic adjustments for a while, but it gets very expensive.

We've tried more aggressive therapies - steroid injections, a series of hyaluronic acid injections (holy mother of god these were painful, I had to be held down).

We've tried minor surgical treatments - arthroscopy. I've had two of these in my right side.  These are exploratory as well as therapeutic.  My surgeon uses these to assess the damage and while he's in there he flushes out the joint.  I'm certain I've had a surgery that was slightly more than arthroscopy but cannot remember what it was.  Who knows.

Eventually, there were no other treatment routes to go down, and the pain wasn't going away any time soon so we had to consider joint replacement surgery.  My surgeon and I had spoken about it for years, but understandably he had to try all the less invasive options before we seriously considered it.  So, in February 2011 I had my right TMJ replaced.  All of my surgeries so far have been on my right as it's degenerating faster than my left, but I'm sure the left will catch up eventually.

Does anyone else immediately forget the pain of something like this, so when you go to write about it afterwards you think it wasn't that bad?  Yeah, I've got that.  I remember being in pain, for a few months but to be honest it was only marginally more painful than the pain I was in anyway, it was just a different type of pain.  I had to take a few months off work to heal up.  I had a fairly gnarly scar - I'm going to post a picture of it so if you're squeamish don't look.  I'll basically show my scar to anyone, because I'm so impressed with how well it has healed.  Seriously, nobody but me can see it now, and I even struggle sometimes.


So, on that note, where am I now?  Just about managing my pain on cocodamol and tramadol.  Just.  Most days.  Some days.  Recently I've been getting a lot of burning joint pain in my left side that the painkillers aren't touching, which I remember all too well from the months before my joint replacement.  I've been finding this quite worrying, but, meh, I've learned to just see what happens and at this point my surgeon trusts my instincts enough that when I say my left side needs looked at, he will.

Who knows what's in the future.  TMJ replacements have only been happening since the 80s so there isn't a lot of data out there about how long they last, but they definitely won't last forever.  I pretty much expect to be a regular patient at maxillo-facial for a very long time and I'm okay with that.

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