Just a short post. I am almost 1 month post op, so here are my photos. I am still somehow swollen, my mouth seems asymetric due to the nasty openbite and gap between teeth, but I think there are some improvements already. Unfortunately, my acne came back, gah!
But the biggest improvement is… I CAN BREATHE THROUGH MY NOSE WITH NO PROBLEMS, YAY!!!
Profile before
Profile after
Front view before
Front view after
Smile before
Smile after
Hey there, its coming along nicely!!! I know its a long process but you are going to do just great
hope this finds you well..
cheers!!!
tom….(in boston massachusetts)
All is looking good
You still have some numbness?
Thanks for the comments. I really should start answering them
My palate and upper front teeth are still numb, but they say I should start feeling them once the gap starts closing itself. As for lips and so – no numbness at all, even if I would be really thankful for some, lol.
Hooray for improvements! (And, um, being able to breathe!)
Hey! First I want to say that you look so good
, (we are very similar) I also have crouzon, I really like reading your blog. I just had Le Fort III done and im sitting home all swollen and yellow, so now its really good to read your blog! Nice photos!
Kadri
You look so nice and I love love love your Smile!!!
Thank you so much for posting all of your experiences.
I am a speech therapist and learning about craniofacial anomalies, and presenting information to my classmates specifically about Crouzon’s. That’s how I came to your blog. None of the information I have found previously was first hand information. So everything was very technical and from the doctor or researcher’s point of view.
Was oral communication ever difficult for you? Were there sounds that were difficult or even impossible to pronounce? Also, did you have a craniotomy as an infant or child?
I am excited that surgery is going well for you. At the same time, I am sorry that others have had such difficulty seeing your beauty pre-op.
I will try to email you today.
My crouzon is fortunately the milder form, so I had no extreme speech problems like some other people. My main problem was (and partially still is) nasality. I think it is caused by the high arched palate combined with narrow nasal passages, but not sure. I have been told that after my surgeries are over, it should be corrected by speech lessons.
My brother, who suffers from much heavier crouzon has serious nasality problems, but I did not notice any other pronounciation difficulties. (but then I am not living with that part of my family for about 8 years)
And yes, I had craniofacial surgery when I was a baby (because mother had the syndrome and they were almost sure I will too, so I got the treatment very early).
Hi! Wow! What a great site! You are a brave woman – so much you’ve gone through – I appreciate your heart, graciousness and strength.
I am a graduate student in Speech Language Pathology and am putting together a group project (with Julie up above) and thought I’d take a peak at your blog.
What a great thing you are doing, documenting your first hand experience. What a precious resource that you have gifted me and others with. Thank you for your willingness and vulnerability to share your experience.
You’re an amazing woman! God bless you!
i don’t think it worked………
I lost a brother to aperts syndrome several years ago. For some reason i never really looked into much about it. I decided to do a little research today and i came across your page and im very happy i did. I didnt know people could live long with aperts syndrome. My brother was only alive for 3 weeks and suffered from several heart problems and a stroke along with the cleft palate and fused fingers and toes. My mother actually wrote a small article about it in news day if you google E. Lipori you will find it. My heart reaches out to you and your family and your courage and strength to be as amazing a person as you are today! I wish you the best of luck in the future, keep smiling (because it made me smile
!!) Take care candar!!!!
Thank you for this blog.. People can be very cruel to people that are different. I admire your courage and tenacity.
My feeling is that you will be successful in life. I personally have always carried my heart on my shoulder.
Hey… Congrats on the improvements.
I also have Crouzons. I have had 20 + surgeries… and
I know (for the most part probably) what you feel.
Well, I guess I’ll talk to you soon.. or what not.
again, Congrats
- Litha
Hey, just wanted to say hi, I’m currently also post SARPE surgery and still expanding. I hope you’re doing well, I’ll check in now and then to see how you’re progressing.
There once was a cat who lived in a hat
Was ist das?
You deserve all the happiness in the world! I don’t have anything similar to what you have. But I do suffer from Trigeminal Neuralgia. I was just surfing the net when I came across your blog. I was just looking for inspirational people. People that have overcome alot and still smile! It hurts for me to smile alot of the time, but I try! lol Take care!
Im happy that people like you make a bolgs about maxilofacial and craniofacial syndrome.Im a one who have deformation(plagiocephaly) and I m proud of you,because Im not so faith (people are so cruel).you have made big think and hope for others!!! GOD BLESS YOU!!!!sorry for my english:( I wont wish you everythink what you could imaged :*