Uhm, I am really sorry for not posting for so long. I have received some concerned messages and I apologize for making you worry. I Had my midface augmentation surgery done on 21. June and everything went well. Two 4mm thick medpor implants are now sitting on my orbital rims and I am almost healed from the surgery.
My doctor did an amazing thing. He (and his team) operated my eye area trough my mouth, so I have no visible scars.
I will post a little more and also some photos when I can, I am extremely busy because of my new job and my granny’s temporarily worsened health condition.
But I will keep you updated, I promise.
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Sorry to hear about your granny! It is good to know you’re doing well.
I hope everything’s fine
I’m a guy in his mid 20′s and also very likely have crouzon. I have never had an official diagnosis, but a lot of the symptoms fit.
When I was about 18 I got fed up with all the doctors visits etc and sort of quit the system. Of course NOW I wish I had gone through all the procedures then but what can ya do. I was young and angry.
I’ve just started the ball rolling on getting something done about my appearance. Because, despite all the “i dont cares” that ive uttered in my life, I do care and my lack of self esteem due to my looks affects my life every day. I’m sick of walking down the street and ignoring all the sideways glances and sudden head turns.
I just want to feel normal and I have found your blog and inspiration. I would love to see an update from you in the near future!
Thank you!!
im a 15 year old girl who “supposely” has crouzon syndrome. I was always told that i had the characteristics of the syndrome. I also most likely have acanthosis, which is related to the syndrome. Its pretty rare to have this skin disorder and the syndrome lol. Im gonna get tested for this syndrome sooner or later. I have also have had a trach. I don’t think people relize how much having this syndrome a facts you personally and mentally. I get called everything and anything. As much as you try to rub it off it still hurts. Your blog has inspired me sooo much lol. Keeping posting your journay through this process.
hiya, just found your blog completely randomly, don’t know if it is active, just wanted to say i admire you and all the best luck with the surgeries. by the way your eyes are beautiful!
Well right now it’s Sunday morning getting ready for church and the normal “worry about your mum having le fort 1 operation” schedule Is still alive and running and there are reasons to worry bout it cause my mum has crouzon syndrome she got it out of her six siblins and she has many problems 1) her heart just starts pounding all of a sudden 2) she has migraine 3) she gets dizziness 4) she has sleeping acne 5) she has pains in her leg ( hopefully not blod clot) 6) she has pain in her arms 7) sometimes starts shakin wen not eatin 8) feels light headed u see she has loads of problems and two days ago I was crying my eyes out and I’m not joking about this and all of a sudden I felt something come into me then I felt dizzy and I stopped crying and started dancing and I knew it was the spirit of Jesus ( please don’t laugh) then yesterday night and this morning I started crying then I searched up people who have been through le fort 1 procedure and this came up and after I finished reading it I knew nothing was going to happen and I just thank u for caring so much and posting your adventures after the operation it really helped god bless u
I am so happy my mum has had the operation and she looks beautiful. She is having a lot of nose bleeds but as u said its going to stop she had the le fort 1 osteotomy yesterday and she is back home now I just wanna thank u again and I hope you r doing great anyway gotta attend to my mum I’ll see u later
I love reading your blog. What a down-to-earth, yet delightfully quirky person you are! I also Love Loreena McKennitt’s music…she if from my home province!
Your journey is inspiring!
Cheers, from Canada!