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Archive for January, 2010

So, lets see an overview of my fight with Crouzon syndrome.  I borrowed some characteristics from some websites

Characteristics often associated with Crouzon Syndrome:

  • Flattened back and top of head – can not be repaired, even though I had a skull surgery as a 2 years old baby (when we count surgeries, this one would be number 0 – the lifesaving one.)
  • Flattened forehead – I would love to have a normal forehead, but I probably will not get a forehead surgery. In my case, it would require some sort of implant or added material to forehead bones and I am not sure if I am vain enough to go through the pain and potencial risc for them. I would kill to have normal, not narrow and flattened temples though. 😦
  • Retruded (hypoplasic) midface and missing/flattened cheekbones – well, this is a tough one and is slowly being repaired surgery after surgery. The 3rd surgery should have a major impact on my midface, so lets see if it can solve this problem.
  • Shallow eye sockets – will be solved by my 3rd surgery
  • Protruding eyeballs– will be solved by my 3rd surgery
  • Beaked like nose– well, my nose is quite ok in this way, I might not even need a rhinoplasty
  • Protruding lower jaw– has been completely solved by my 1st and 2nd surgery (mostly the 2nd)
  • Overcrowding of teeth – the 1st surgery(SARPE)  and ortho treatment solved it almost perfectly
  • Narrow high arched palate– the 1st surgery(SARPE)  and ortho treatment solved it almost perfectly
  • Narrow nasal passages – solved by surgery 1 and 2 (the 1st one helped quite a lot already, 2nd opened the passages even more)
  • Bite problems – class III maloclussion and open bite completely solved by surgery 1 and 2 and orthodontic treatment)
  • Cleft Palate – NO

Problems which can occur with Crouzon Syndrome:

  • Hearing loss- NO
  • Absence of ear canals- NO
  • Deformity of middle ears- NO
  • Vision problems- i have minor vision problems and eye irritation, but nothing major
  • Crossed eyes – NO
  • Involuntary movement of eyes – NO
  • Curvature of the spine – NO
  • Vertigo and dizziness – sometimes 😦
  • Facial deformity – YES
  • Deformity of limbs – NO
  • Webbed toes – NO
  • Minear’s Disease – NO

Well, lets look at it this way. I am really really lucky to not have any of the additional problems associated with Crouzon’s and most of the facial bone structure problems have been already solved or will be solved this year. I will never look completely normal, because my forehead and skull will remain somewhat flattened and disorted even after all the surgeries I went through.

Overally, I really recommend going the multiple surgery route with Crouzon, it can be life changing. (Although always check for possible complications of each procedure and take time to consider, if you are willing to go through the risk. I did and thats the reason why I am NOT having Le Fort II or Le Fort III. Loss of the sense of smell or partial loss of vision is not something I am willing to go through in case things went very very bad.)

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