Since this whole nighmare begin for two years now (not a day without pain)-
i can admit now - i'm also depressed about the change in my look , in my face.
I've said it here regrading my dianosis
my face changed so much over these 2 years. i had a gentle facial look ... and now it seems my jaw bones grew larger .. espicially on the left side (which also can be seen and "extra" bone on the CT. nothing diagnostic) . and it's like one side got swollen the bones got "puffy" and the bone got thinner (know it's sound contradicting) . and the boned really grow.
(by the way i'm thin.. and got much thinner these month.. lost 4 kg and weight now 54kg. ).
maybe it's a combination of growing up - but surely not all.
The doctor here said i 've had in the bone a progress that should happen to to a 50 years old man not 35 years old. but couldn't explain it. it's a little better when it was a year ago (a year ago when i got the the ER that doctor told my mother my face looked deformed and asked here if i was always like that.)
the swelling got a little better.. but it's like the bones grew. and face looks larger.
. it depresses me that i have to suffer also from not liking my self in the mirror because of this hellish nightmare that happens.
not only the pain.. but this. and it's not that there are common surgical procedures to change the look of facial bones when they are not really sickly deformed.
Thanks for letting me share...and sorry for the Off Topic
Hi, is the left side your TN side? I wonder if somehow with all the pain your body has responded by growing bone (or depositing more calcium or something) ... perhaps there is also built up muscle from clenching your jaw or something like that.
I'm sorry that you're so unhappy. It wouldn't help for me to tell you that other people probably don't notice it - after all, if there's something on us that we don't like we feel like it's a million times worse (think of when we get a big pimple and are convinced it's a mountain on our face!) ... if it wasn't for the TN you could see a cosmetic surgeon (they can shave down bone etc - they often take off cartilage and bone and things in procedures). I guess it all depends on just how much it is affecting your mental health. Perhaps you could see a professional about how you are feeling and maybe they can help with some cognitive therapy and/or medication.
We all get depressed about anything, I don't think it's off topic at all, we get depressed with the TN let alone other things like this!
I am so very sorry for what you are going through. I'm not sure what I can say to help, other than I'm sorry. I know this is not anything like what you are dealing with, but with all of my medications and their changes, and not feeling well enough to exercise, I have gained weight and I am used to being slender. This horrible agony takes it's toll on all of us, and we all get depressed. Some days, I'm not even sure why I'm down. Just wanted to say that I'm sorry, I understand, and I hope you can get relief.
Dont go down the route of cosmetic surgery in case it effects your TN and makes it much worse. I wonder if there is a link between TN and your face bones changing shape? I have had swelling before but I have not heard of the bones changing. It may be because of you not eating because of the TN and your face bones are showing that much more. Maybe protein drinks would help you gain weight again which may help your appearance. Try not to concentrate on it too much Nir, it is easy for it to become much more of a problem to you then it is to other people.
Hi, just to say I have noticed my right cheek bone changing shape. Not a lot, just a little in the past couple of months. My cheek went paralysed and I thought I felt it then, but thought I was a little nuts. You too are having the face shape changing problem too. I wonder if there are any others, or whether it is just us?
yes - i've noticed in the lasy years my lefy jaw (where my pain is changed) . at first i remeber after a year going to the ER -and the doctor specifically told my mom that my face on one side is a bit "deformed" ! that was the word. she was right.
at first - my jaw bone got a little "pointy/sharp" it was obvious to the touch.
also - i god a little swollen
nothing of this was dramatic - but it is for sure. some dotcors first said "you look too much in the mirror". and then 'we can't know if you haven't always been like this'.
but some doctors that touched the place - confirmed that some bone "grew" up there. no one can explain. and its' getting better now (the look . new person who would see me assume this is the shape of my face. nothing abnormal.).
i've talked to 2 people in Israel also had this change - so we are not alone. nothing dramatic - but a person and his surroundings know how he looks like.
this look is we me now for so long - that this is my "new" look. but i know i've changed much.
another thing i was explained- it's maybe due to over activily of the muscles (i know i do that. to help the pain).
also - i assume there WAS some bone infection that cuase the change. it has done it's damage and even if now the swollen face is less - the damage to the nerve etc. was done.
no to cosmetic surgery since it caused the TN and i am not the only case. it does make sense. thats why a plastic surgeon doesnt want to fix the mess they started.
Michelle said:
Hi, just to say I have noticed my right cheek bone changing shape. Not a lot, just a little in the past couple of months. My cheek went paralysed and I thought I felt it then, but thought I was a little nuts. You too are having the face shape changing problem too. I wonder if there are any others, or whether it is just us?
Dear Nir, I'm sure you've noticed that you aren't the only one, I'm sorry that it's happened to any of us,sorry about the large print I don't know what I did or how to fix it,I don't even look in a mirrow any more unless I have too.My right side is the worse for TN, when my eye is real bad my whole right side will swell up so bad I can hardly see out of my eye,sometimes it will even look like someone punched me. My ENT. says it is from my TN,the same with my bottom jaw, combo of TN, TMJ, and clenching, I have A top plate but it causes terrible pain if I don't where it,but the bottom does the same thing if I where it,I try to relax my mouth every time I think about it, so my jaw is all bumpy and is lower on the right side,but when I do fall asleep, so when I do sleep I awake every 20 mins. or so in awful pain because I'm in pain from clenching or turned on my right side or the back of my head, I usually have to sit
elaine48 - didn't know it started of a cosmetic procedure in your case (you can sue the surgeon. not that it's any comfort for the pain.
i would do a cosmetic surgery to improve my look now... but the surgery i would have done - is not something realistic ... sliming of the jaw bone... it's more like science fiction at this stage.
i had a really nice gentle face. now it''s deformed. doctor says it lack of muscle activity. i'm not sure.
Dawn - i'm so sorry :( i'm also depreesed about my look now. the pain is the worse.. but aside the pain - there is this. i feel my bone changes.. and that is something NOTHING can fix ...
about you eyes... i knew personally a girl after a dental work on the upper tooth... her eye was always tearing .. and she had great pain.. she went to doctors she knocked her head in the wall to show them how she was painful.
after a year she arrived to a specialist here in Israel.. who told her the her jaw moved.. very very little.. she did something in her face (pressed on some points.. and slowly for the necxt month.. the girl was improving... no pain.. no tearing... just remembered this story.. don't know if it's connected to anything.
i alsways think - if' it's a nerve got damaged.. why are there signs on inflamation ? (change in face.. swollen face).
by the way my left jaw also got "lawer" like the muscle there don't hold the jaw as before.