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Archive for the ‘Crouzon syndrome’ Category

So, lets see an overview of my fight with Crouzon syndrome.ย  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. ๐Ÿ˜ฆ
  • 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)ย  and ortho treatment solved it almost perfectly
  • Narrow high arched palate– the 1st surgery(SARPE)ย  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 ๐Ÿ˜ฆ
  • 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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Ok guys, I apologize, that I havent been posting for a while, but my life has not been so interesting anyway. I am still doing all the ortho stuff with my teeth, I am still working and I still spend most of my free time with a boring life of a writer, lol.

This is me now. My upper jaw is wider than before and my hair is hennaed red, haha. I love my red hair, even though this pic is freshly hennaed and the color oxidized a little and is darker now. (Excuse the zero makeup bad skin pic, but I am pre-op, I do not care for warpaint atm, also the hair happens to messy after dry-blowing, lol).

candar-red

Anyway, my teeth are lined up and ready for a new surgery – a maxillary advancement in a Le Fort I line. In other words, they cut my upper jaw off in the same place they did before, but this time they move it forwards and give me an actual bite. I mean hey, I have never had a bite that really touches, it will be a completely new thing for me.ย  Also I am hoping that it will stop all the annoying headaches and migraines I have been having all day the few last months. If things go well, no more dizziness, no moer headaches, no more extremely sore jaws. It will feel like heaven ๐Ÿ˜€

Another good news is that I actually finished Kiseki, my brand new urban fantasy book, about a week ago and moved to editing. I already have a publisher who wants to give it a try and read through it, so we will see if he likes it or not. I have another one in my sleeve, but the one I am hoping for is one of the biggest publishing houses in my country and I was lucky enough to be able to meet with the director and introduce the idea of my book to him.

Anyway, I am off to hospital tomorrow at 5 pm and my surgery takes place around 8:00 am on Monday the 1st June.

Wish me luck guys, I am going to need it.

PS: Yes, I admit it, I am a little scared here. But trying to stay positive until I wake up from the surgery ๐Ÿ™‚

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It seems that I am really neglecting this blog, but the truth is that I do not have much to write about. I am very busy at the moment with my dayjob as a legal secretary and trying to finish my book and screenplay in the spare time. Seriously, sometimes I feel like I needed at least few months of vacation to finish it, but even like this, I am getting closer and closer to the end. Only few dozen pages and I am done.

As for my surgery, I am still waiting. I got some bad news from my ortho at the last visit – it seems that one side of my jaw is relapsing no matter what they do, so they keep postponing my next surgery and adding more and more wires to my mouth. I have some hope that my teeth and jaw could be prepared by the start of April, but by the way she said it, my next surgery wont happen sooner than in May or June. ๐Ÿ˜ฆย  There are moments when it is really annoying, because I can not plan anything at all until I have the date. There is a conzert of Yamato drummers in Prague, but guess what? Yes, I will be “probably” at hospital during that time… sometimes, I really wish I had it all behind me and could just look back and say “Whew, its done and I survived with flying colours, yay!”

Anyway, end of the rant and back to writing.

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Life is going decently, that is why I havent been posting here for a while. The job showed to be really nice and I must say I love it. I was also able to finish one of the difficult scenes in my screenplay and am almost done with the story (only about 145 pages of the finale, but I have them drafted already). And yes, I am still foolishly dreaming of working with Gackt on this project, lol.

As for my reconstructive surgery – well, things are not the best, but the improvement is visible, so I am not complaining much and am trying to cope with the few bad moments. I got my palatal retainer (which should work as re-expander as well and give me the few extra mm that the expander did not manage to) and seriously,getting it in was hell on earth. I was crying by pain and the doctor could not fit it in no matter what she did at first. One of my molar bands was ripped off in the process, which actually showed to be good, because she could stick the wire in and then cement the band back on my tooth.

One side of my mouth is extremely sensitive to pain and they have no idea why it is so. It looks like something must have gone wrong with the surgery. I suppose that is my luck ๐Ÿ˜ฆ

Anyway, I will be posting a little more from now on. I also got a myspace account (mainly for writing and work reasons), but if you want to friend me, let me know that you got my contact from here. I usually do not accept just anybody for the sake of “having a lot of friends”.

http://www.myspace.com/ladycandar

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It’s out! After 6 months, it is out!

At the 20th March, I spent about a hour in the dentist’s chair and was getting my Hyrax out, teeth de-cemented and new bands applied on my molars. To be honest, it was not the most pleasant experience, even with 800mg of Ibalgin taken before I went to the hospital. But then, my teeth are quite extreme and I am clinical patient, so do not fear the RPE (Hyrax expander) removal just because I said it hurt in my case.

It’s really nice to have a horse bit free palate.

My teeth still hurt and my ortho says that they should not, so she did not use any more elastics on me this time, giving my teeth 6 weeks of rest with just the wire to keep them in shape. Hopefully, the palate and teeth will stop being sore, because it is really tiring lately.

Getting the half-slipped off band finally out also lets me to close my mouth a little better now and my open bite closed by about 2mm in the front. The result: TMJ got better.

Seriously, comparing my before and after pic of teeth makes me feel quite good about this all. There definitively IS an improvement, even with all the pain.

braces

braced smile

My next surgery is planned in about 6-9 months, after my teeth are lined up and prepared. It will be bimaxial with upper jaw moved forward and my lower tilted. I am looking forward to it, because the results should be quite dramatic.

As for the rest of my life: I still have no regular job, I am still quite sore and tired and I am still working hard on my screenplay, where I am getting to the finale. Seriously, I really want to have the draft done as soon as possible.

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Yesterday’s night was bad. Really really really bad.

I spent most of it with a finger on emergency button, waiting for something bad to happen. Luckily, it did not.

I was sore, my neck, head and chest hurt, so did my canylla and both hands. I could not breathe well and overally felt like hit by a truck. My doctor explained it today as delayed shock from surgery. To be honest, it wasn’t just unpleasant. It was really really scary.

When I woke up at 6:00 am this morning,ย  I got my last antibiotics and my canylla has been removed. Yay I say! I could finally take a shower and wash my hair properly.

I am feeling a little better today, even if I got fever from not drinking enough today and the nerves on my teeth and palate are starting to reatach. Well… ok, time to go to bed again. I will be back with an update tomorrow.

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Ok, hello again everyone. As promised, I am going to share my surgery experience. The text below is made from fragments that I kept writing on paper during the last few days and rewrote today. Please, excuse the mistakes and typos. I will check the text when I feel better. Also I made some photos, but I will be able to upload them first when I come back home. They consist of mostly my room pics and pics of one swollen hamster – me.

Anyway, letโ€™s begin.

Thursday – The hospital entering day

I was nervous. The first thing I had to do was to visit my best friend and return her notes that I borrowed from her months ago, so she can graduate, lol. I also brought her a plush crab for good luck with her exams, which will take place when I will be in the hospital. She was ill, so we just talked for few minutes and then I took another bus to the hospital.

I came a little late (hey, I am INFP personality, that is my sacred right), but they did not mind. A nurse took my examinations and x-rays and let me subscribe ton of papers. Then I met a doctor who explained me all the details of the surgery, medication etc etc.

The problem arised, when my main surgeon came and it came out that they have to extract a totally healthy tooth because my dentist wished for it. My surgeon did not agree, I did neither so they argued quite a lot with my dentist. The result was that the tooth will be extracted during the surgery. (As I realised later, my surgeon changed his mind and did not do it, instead finding out a way how to reach the same result while keeping the tooth).

I was really stressed from the argues, hints that I must have known it from before because my dentist must have explained it and whatever.

In the end of it, I felt really bad. I felt like it was me who caused the mess.

Oh, I also realised I weight 60 Kg and measure 163 cm (though the nurse wrote down 165 so I wont feel midget-ish, lol). My plan is to go down to 55 Kg and keep it and I must say that being on liquid diet for few months sounds like the perfect chance for doing it ๐Ÿ˜‰

In hospital with Gackt

The night before my surgery was strangely calm. I was given Diazepam in the evening, so I would not stress myself and could sleep well but it merely put me into a strange thinking mood with totally relaxed body and clear mind. Felt like a meditation more than anything else.

It was silent in the hospital. The younger children were given tranquilizers, so they could sleep peacefully, especially because some of them had their surgeries in Thursday, the day before me.

There were 3 other patients in my room. One was a young girl about 10, who did not seem to like me at all, she was to be released on Friday and one 21 years old, who was also long after her surgery and should go home the next day as well. The third was freshly operated on girl who was about 17, and was in a deep sleep when I arrived to hospital. She just returned from her wisdom teeth removal, which seems to be the most common procedure performed here on teens and adults. They perform it under general anaesthesia with sewing and all.

I could see the nurse slip into the room carrying a flashlight and checking on her about twice an hour and giving her different medication in infusion bottles every few hours. I was pretending to be asleep when she was around, because I did not want to be given stronger sleeping pill – I knew I will be drugged heavily the next day, no need to add to it.

I was listening to Gackt’s music on my small MP3 player, letting his ballads from Seventh Night Unplugged and Love Letter CD’s wash over me and keep me company. When I think about it, these two CDs are almost perfect pre-surgery music – they are calming, deep, gentle. There is something in them that I can not grasp exactly, but that really helped me to not stress myself over the next day’s issues.

So I was there. Lying in a metal bed in the biggest hospital in Prague, surrounded by patients and nurses preparing mentally for the surgery that had to take place at 8:15 the next morning, while listening to Gackt’s deep voice. To be honest, the idea that something might get wrong and I might not wake up from my general anaesthesia crossed my mind few times, but I was decided and there was no way out of it. Strangely, I did not even fear it much.

I fell asleep around 1 or 2 am and woke up at about 4 am to Gackt’s song Oasis. My battery decided to die few minutes after in the middle of the song, but I was too tired to switch it, so I just put the MP3 player aside and fell asleep again. Without the music, falling asleep was a little harsher, because I started worrying a little. Anyway, I was too tired to panic anyway, so I managed to sleep till 5 am when the nurse woke me up for another Diazepam and 6 am for temperature check. I had 36 celsius, which is quite low, but then, I am a mutated vampire thingy anyway ๐Ÿ˜‰

I knew I will be in the surgery room in few hours, so I did not go asleep again as the other girls in my room did, but instead started preparing myself. I took a long hot shower, brushed my teeth several times using a lot of herbal toothpaste to prevent any possible post surgery infection, tied up my hair and such. I also sorted my things in my cabinet next to bed (just in case I thought) and then laid down with a book and was waiting for the nurse to come with premedication injections.

The surgery

She appeared at about 7:30 and I had to change to white surgery nightie called “angel” in our hospital – it is the coat like thing with naked back. If you ask me, it felt like loose straight jacket, lol. The nurse also bandaged my legs all the way up to my crotch to prevent possible thrombosis from the surgery. Then it was quick. I got two premedication injections, the doctors came to visit me and other patients and then told me it is time and asked me if I have some further questions or something, if I am afraid and such. I told them I am fine and know everything I need, so I was taken to the 6th floor (6,5 floors up) to a huge surgery room. They carried me from my bed to the operating table and I had to strip and was covered by a sterile green blanket thingy. They also fastened a belt around my waist and arms, so I would not fall down.

The worst part was about to come. Canylla’s and transfusion/infusion needles and monitoring. I have really thin veins that tend to rupture, so it took 5 or 6 very painful tries until they hit the right vein that let the needle stay in. They also needed to use the thinnest canylla they had, because anything else did not work. The canylla’s are located on my hand between the fingers and wrist and to be honest, it hurts quite a lot there, even if I am use to have blood taken from that. I was about to cry, when they repeated that my vein ripped again and they need to try again, but somebody held my hand and was caressing it and saying it will be fine. I have no idea who it was, I do not know even if it was male or female, but it felt nice and the last try worked. Before I could look at the person, I got my general anaesthesia and fell asleep.

Waking up

I woke up about 5 hours later in a new room. I got a single room right across the nursesโ€™ station, so if anything happened, they could come immediately. I was one of the heavier surgery patients, not really a wisdom tooth removal one who can go home in 2-3 days.

First things I realised were two thick canylla’s in each of my hand and infusion with something dripping into my vein. My head and jaws hurt like hell, I could not feel my upper teeth and felt like I was run over by an angry bull in heat. All I could taste was disinfection, flood in my mouth and my lips and that my lips were totally dry and sore.

It hurt so much I could not even cry, so I was just whining like a beaten puppy. I was also still heavily drugged, so I could not control myself too well. My nose was bleeding heavily and I was sure something must have gone terribly terribly wrong. I was told it was a minor surgery and no big deal and now….

Waking up again

Fortunately, I fell asleep very soon after the first real awakening and while I was taking the additional sleep, the strong painkillers did their work. I woke up to get another infusion of painkillers, then a shot to stop my bleeding and another against swelling. Then large bottle of antibiotics and then canylla cleaning and sealing something. I think they called it heparine closing. When the infusions stopped, I was feeling quite fine actually. Nothing hurt at all, except opening my mouth too much or trying to smile – if I stayed calm, I felt almost like I had no surgery. My nose was still bleeding (I think they used the right nostril for intubation, because it continued bleeding time to time for about 3 days). I was swollen and somewhat sore, but quite fine.

The first shock totally wore off and I realised I had 3 large incisions in my mouth instead of the planned one (or one and two tiny ones). That was the reason for the horrible first awakening. Due to my unusual condition (Crouzon Syndrome and almost cleft palate), they had to modify the approach during the surgery and also try if the Hyrax screw works and opened it the whole way to check if the teeth will match and all. So, my SARPE with Le Forte I was finished well.

Anyway, except for the painful canylla’s (damn my bad veins once more), I felt great compared to what I expected. I had almost no bruising and the only major thing that kept worrying me was the huge nosebleed (and yes, I did not want my pajama’s with teddy bears stained too, lol). My surgeon stopped by to check on me and said the nosebleed was expected and will stop soonish and if not, that I will get medication into my nose. I did not want that, so I kept using small soft tissues to drain the blood out of the nose and slowly it dried up and was starting only when I moved quickly or elevated my head too much.

I finished reading the book, went through dozens of infusions and was forced to drink at least 10 glasses of tea. That was the requirement or I would get some additional infusions which I did not want. I managed to drink 12 during the day, which paid off and unlike other patients, I had no fever the next day. Going to toilet was a holy quest, but I managed it alone, even if keeping close to the walls. My head was spinning and I could not sleep until 0:30 am, but since I was on a single room, the nurse let me read my book and just kept checking on me. I started reading a third book and was listening to Gackt, Loreena McKennit, October Project and a CD called Songs for the free birds. Most of it was Gackt. I just love his deep voice, especially when I am not feeling well.

Also immediately when I could, I asked for my phone and texted grandmother and my friends that I am still alive and that I am fine. I did not mention the bad first awakening, no reason to scare them and have them worried.

I got sponge biscuits to drip in tea and water-blended baby food apple thingy to eat for dinner. Drinking was ok before, but as I realised, eating was an ordeal. The apples made my palate and whole mouth sore after first few spoons. I ate just about half of it and then some of the water softened biscuits, but at least something. When I did, I stopped feeling sick and my stomach calmed down, so it was good for something.

As for funny moments, I happened to lie on my nurse bell two times and started the emergency call for sisters. I felt so stupid, especially when it happened the second time. But I also needed to have it close to me in case something really happened and I needed the nurse or doctor immediately.

Saturday

Saturday was uneventful. I am not allowed to blow my nose for 4 weeks, so I had to learn how to softly clean it using rolled tissues and such things. I had some hard time with the nosebleeds (and hiding it’s severity from my surgeon who wanted to check it properly = ouch!), but I managed it all somehow. Also sneezing would be really bad for me (one bad sneeze could rip my wound and stitches and keep me in hospital at least a week longer), so I had to learn how to prevent it.

(Oh, damn, nosebleed incoming. Let me stick tissues into my nostrils so we can continue… ok, good now. Hmm, for some reason, I can not stop thinking about Mr. Bean while I am walking around the hospital with huge white tissues in my nose ;))

Anyway, where were we? Ah, yes. I could also eat a normal breakfast (well, if you call a very liquid puree or what it was a normal breakfast) and was allowed to have my right unused canylla removed. Actually it was the less painful one, but when the nurse tried to give me infusions through it, it was stinging like hell, so they decided they will remove it, so I wonโ€™t get vein inflammation.

The doctor checked my incisions and stitches (I was dead by fear as I expected something nasty and painful coming) and just praised me for doing well. My stitches and incisions were totally clean, no inflammation, healing and closing well and I had no fever. I had to start cleaning my teeth from that moment, which showed to be quite difficult, provided that I can not feel them, nor can I properly open my mouth. But I was (and still am) doing my best, using a mirror for reference. I also got chamomile extract for rinsing.

I could sleep well on Sunday. The only thing was that I had to wake up for infusions during the night, because my canylla seemed a little blocked and I had to hold my hand in a specific position to be able to get the medications without having to remove and attach the canylla once more (which would mean more tries in my case and I did not want that). Midnight infusion was the scariest one – the canylla got blocked totally, but a brave nurse pressed the infusion bag a little and cleaned it. Ouch! Very very very ouch! But it saved me from having the needle reattached, so bless her.

Oh, I almost forgot. My grandmother and my boyfriend came to visit me today, which was really sweet of them. My bf even brought me my notebook and games. How can one not love that guy? ๐Ÿ˜‰

Funny moments: When the nurse came at midnight, I almost jumped out of my bed saying: “Oh, it is morning already?! Oh my gosh, it is morning!” and she had to put me back to the bed and explain that I am just getting antibiotics and that the light is the lamp above me.

Post-op sarpe profile

Post-op sarpe

Canyla

Not much swelling yet

Right canyla removed

 

Sunday

Today. Well, what can I say? Well, my painkillers stopped being served. Ouch. I can feel the incisions, but I am getting pills, so it is not so bad. I feel the wound fully for the first time (except the first awakening) and it is sore and tense, but no big deal unless I smile, talk or eat. Oh, rinsing and tooth brushing is a little painful too, but bearable.

I got called for check and one of the doctors cleaned the wound and stitches using… well… peroxide. OUCH! Hurts. I was trying to be brave, but one of the nurses told the doctor I am not as fine as I say and that I asked for painkillers in the morning, hmmm…

If things go well, I can have my second canylla removed on Monday and finally take a proper shower and wash my hair.

Also I should have an appointment with a renomed plastic surgeon who is working with my main reconstructive surgeon very often and would not mind to give some advices for my second and third surgery in the future – which, if things go well, could be even blended in one.

Funny moments: People are starting to call me teddy-bear thanks to my super cute and very infantile pajama covered with yellow teddy bear pictures.

(

 

 

Strange facts:

Strong antibiotics work for my acne. No new acne appeared, even if my face was violated in many horrible ways during the surgery and I really expected a huge breakout. I wish it stayed so clear and rosy. (Update from 1 month post op: The acne is back :()

You can get vein inflammation if you feel that your canylla hurts. Be careful about that and tell it to your doc if it happens.

If you are all swollen and fed hamster like looking and your bf comes in and says “oh, you look different, somehow better”, do not kill him. He probably just thinks you had something else done and wants to be nice, lol ๐Ÿ™‚

Pics:

 

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