It’s been over a year since I posted anything on my progress after the surgical event (see other posts in this same category), and I don’t think I will resume posting on that topic. My relationship with polyarthritis has outgrown that episode – we have more and deeper things in common for this relationship to be derailed by a one night stand with some surgeons…
What I am observing is a disease that is claiming back my body one joint at the time – patient, but persisting. So I thought it would be interesting to periodically report on the casualties I am suffering and assess the impact it is having on my ability to perform like any other human. Of course such reports cannot be frequent – DON’T watch this space if you seek excitement and daily news, but perhaps once a year if there’s anything to report.
Statu quo (nov. 21st, 2009) – body count
- right fourth toe
- right middle finger – first joint
- left thumb – last joint
- left ringfinger – last joint (this is rather the outcome of a small trauma which broke it – since I remember the procedure that makes trauma centers cast your forearm in plaster for six weeks, leading to horrible pain when the cast is removed and movement resumes, I decided to do a home-made wrapping which obviously healed the joint in the wrong position. Careless !)
- right elbow – a suspect epicondilitis causes obnoxious pain when I place my elbow on any hard surface (such as a desk)
It is eighteen months since I had my operation; I could basically rewrite what I reported six months (except maybe for the bone cracks which I do not seem to able to feel anymore); next week I am seeing my surgeon for a periodical check, and will ask him what is forecast is for me to get back my lower lip, which in all honesty is the only thing that bugs me now.
I also wonder if all that bone-forming activity is the reason for my abnormal love for cheese: a friend told me that if he ate as much cheese as I do, he’d get a stroke in a week, but I do not seem to mind it at all and, given a choice, it is usually my first choice.
Cheese and sushi, ugh !
I am actually late on this post – it’s one year plus three days.
As it has been clear since a few months, the healing process is still under way, but here is the mandatory mug shot:
Every affected part of my face is simply but veeeeeery slowly going back to normal: I almost feel a “normal” bite again (i.e. like my teeth are no longer in weird places), and I am almost no longer biting my tongue and inner cheeks in error. Upper lip is now pretty much normal, but lower lip is definitely not: numbness and imperfect control are still there. Gums are stubborn: incredibly both upper and lower gums and teeth are still pretty much gone. I have learned to brush teeth visually, i.e. I watch where I clean, because for the most part I feel almost nothing. This helped me because it gives me a way to “feel” clean
Nose feels and works very good, but when I touch my face from the eye line down, I can still sense the crack in the bones, especially on the upper jaw.
Of course sleep has vastly improved – which where it all started from, I guess..
Taking advantage of my youngest daughter enjoying a break from school after Easter, I moved my working quarters to St Raphael. The weather is predictably sunny and clear, helped by a powerful blowing of the mistral.
For those who don’t know it, mistral is a powerful dry northern wind. It is reputed to be a healthy wind as it dries the air, although in the summer it is responsible or the firestorms that ravage the south of France; we had a couple of brushes with these phenomenons and they’re not nice.
However, the reason I mention mistral is that I have discovered it induces massive headaches in yours truly. This is obviously related in some way which I don’t understand to the post-surgery healing process as I never experienced this before. Yesterday we were in the hills behind St Tropez to visit a most wonderful XII century monastery and the wind was truly howling around these ancient stones, a most picturesque setup, but it marked the onset of a migraine outbreak so bad I could not drive and had to down a mouthful of Tylenols.
Mirella says that popular wisdom has it that windy weather is “bad for nerves”: I’m not quite sure what this means, but luckily another popular wisdom contribution says that wind “lasts three days”, so I’m staying in for a couple of days, just to make sure.
Not much of an update: slow but sure progress. Teeth are released from torpor very slowly, but the progress is there.
The biggest challenge right now is the extreme sensitivity of the mouth inner serface: I think it has to do with the huge scar tissue who is now gaining back its normal sensitivity, which means hot liquids or crunchy foods can be really painful.
Also the control of food circulation in the now differently shaped mouth is problematic, it’s almost like the tongue did not know how to reach some of the (new) recesses – wonder if that is ever going away.
Brushing still unpleasant, but I’m getting used to it (or maybe it’s becoming less unpleasant).
Did my CAT scan(s) a couple of weeks ago – won’t have the results for a few days, but there’s no hurry; surgeon sez they might call me before Christmas for the overall review, but I suspect it’s more likely to be afterwards unless there’s something they find in the scans which prompts them to speed it up.
My impressions? As I have been reporting for a couple of months, everybody around me says my temper has shortened considerably (my kids say I’m now firmly into “grumpy” territory), and there is no denying the slow progress is getting on my nerves. Also my body sends out conflicting messages: if on one hand I cannot call what I feel “pain” (my perception of pain is linked to arthritis, and this does not compare) yet the subpar functionality of mouth, lips and teeth is impossible to ignore.
I had read on some other guy’ blog he was worried about his mouth opening, but mine does not seem to have a problem there: however, the whole inside of the mouth is still very sensitive to hot/cold and to “crunchy” foods. Wife says I should report this to the doctors, but it feels like I’m whining and I hate whining; besides there’s no real pain or impediment so I don’t know what I could report.
I haven’t seen my dentist since the op, and I am beginning to feel guilty about it – not that in normal time I am fond of visiting him, but right now the idea of anyone messing with that area is not what I need; besides, my surgeon still sees me once a month, and if there was something wrong with a tooth I’m sure he’d tell me; luckily the deep discomfort in brushing teeth is gone (or perhaps I’m getting used to it) so I can happily brush obsessively which makes me feel better about avoiding dentist checks.
This will be my last monthly update: progress is too slow to be chronicled on a monthly basis, so see you in february.
This was a more difficult month than many others – not really surprising, the slowness of improvement is kind of wearing me out. In fact I found I am trying to avoid the subject altogether, brushing it off in a rather coarse way when some friend asks me about how it’s going.
In a rare discussion of this topic the other day I said – more to myself than to my friend – that in the time it’s will take me to recover I could heal from a major injury (like a broken leg or arm) three or four times over.
So yes, it is a long stretch of time and it is a bit disheartening to realize I am not even half way through – (even though it is maybe reasonable to expect than going forward the situation improves faster); I am due for a more in depth check up in a week or so, a half day job with new CAT scans and a whole lot of exams just to confirm what I already know: everything according to plan. I hope they do some X-ray which I could post here (more gruesome details, yes!)
One thing that I can see as different is the progressive de-swelling of internal tissue around the bone cuts: this is especially noticeable on the upper maxilla where I can now distinctly feeling the gap in the bone touching along the line above the tooth roots. It’s amazing that despite the fact that the whole front part of both maxillary bones are severed, my face still holds together pretty solidly.
I restarted my singing practice and I do not seem to have suffered in any way, except the unnerving difficulty on the sibilants – on the contrary, I feel a little more powerful in the high-pitched range (like the vast majority of boys, I am a natural baritone trying to overreach to a tenor and the high range always requires a little more concentration) so the additional volume (maybe the now larger windpipe? who knows) is a welcome help.
Progress inches along – brushing my teeth is now downright unpleasant: is this because I am getting my front section back ? I sure hope so. I dread the moment I will need to see my dentist again, the idea of someone else messing up the area is rather disturbing, so I hope I won’t have to do this any time soon. Mercifully they knew that and while they did the operation they also repaired a tooth whose filling got damaged days before the operation, so it’s not like there is any urgent reason to go to see my friend the dentist.
If nothing else, however, the time for the periodical cleaning of the tartar deposit will come due sooner or later and then…
It’s hard to believe that four months after-op I still feel swollen sections around the line of the upper maxilla bone cut, not so much outside but inside and I was wondering if there are any signs of the furious activity with which my body is building bone to fill the gaps left by the move. Keep up the good work, body, I need it !
I am pissed about my almost completed inability to smile and the poor control of the lower lip which still makes eating a worrisome moment, especially when in public and wearing my best stark white shirts of course >:-(
I sleep more – and I seem to NEED to sleep more: if I get less than six hours, I wake up all right, but I wish I could have slept longer, something I never really experienced before. Same in the evening: I still go way too late, but now I feel the desire to lie down, again unknown before.
So let’s see: three months have gone.
Most people who get told the tale of the surgery marvel that I look so all right after only three months, but that’s because they naturally expect scars so numerous to make my face look like it’s been put together using leftover pieces from other faces. But of course that’s not the case in these operations; the healing is all inside. And it’s a looooong process.
Especially unnerving for me is the lack of some functions – certainly not fundamental like speaking or eating, but….
- My sense of taste is greatly altered – I eat all right, but there’s hardly any pleasure in doing so.
- Any touch however light or delicate to the area from my nose down is unpleasant.
- I cannot smile nor laugh. Facial expressivity in general is still impaired.
- I cannot kiss (or be kissed).
- The control of my lower lip is still somewhat unreliable.
- I have started chewing gum (which I never liked) simply to get more exercise to the damn jaw muscles, and I think it’s helping.
- Brushing my teeth is an outright unpleasant affair, with the added complication that I never know if my teeth “feel” clean, and I end up brushing compulsively every couple of hours.
But twitching is gone, pain is gone, I sleep like a log and I KNOW that I am healing – so I haven’t even the slightest afterthought about the whole affair.
I just wish it’d go faster, that’s all.
Am in London today – flight was unventful. The Medicine Man was right once again !