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Archive for the ‘Maxillofacial surgery’ Category

So, lets see an overview of my fight with Crouzon syndrome.Β  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)Β  and ortho treatment solved it almost perfectly
  • Narrow high arched palate– the 1st surgery(SARPE)Β  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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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.Β  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 πŸ˜€

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 πŸ™‚

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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. 😦  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 😦

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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Ok, I got my hair chopped short yesterday. And with short, I mean VERY short. I did not have such short hair for at least 10 years, probably even more.

I ran to the hairdresser with a black and white picture of a haircut that I liked, but unfortunately, my hair is quite fine and that person had nice strong hair, so it was impossible to create on me without ton of layes of laque, styling foam and whatever, so we decided to improvise. I had two demands: I want it layered and fluffy and I do not want a blunt fringe.

When she started cutting it, it felt strange to have my hair chopped off short just in the middle of my neck, but it was about to get even shorter. So I sat there, watching her dance around me with all sorts of combs, scissors, razors and hairpins. Anyway, the result is not bad. Short, light, fluffy and messy. It can be combed back withΒ  the help of some styling products for formal events, but it needs almost no maintenance for everyday wear. I would say it is a good haircut for somebody who spends most of her time at home (with aching teeth, gah!) or with doctors.

As for the shattered dream… well, I went to my orthodontist for separators into my lower teeth, so I can get my lower braces on next thursday. The separators hurt a little as she forced them in, but that is mainly because my mouth is incredibly sensitive lately. Anyway, she checked up my teeth and palate and commented that half of my palate did not expand as well as the other, but they can correct it later with some sort of “braces” (I forgot how the thing was called). The bad part was the band around my last left molar is really somehow loose and looks like it might slide off one day. She told me we need to keep it on till the second half of January and told me that I should not bite at all. So back to mashed stuff. But… I have been told that we need to keep the RPE on only for 2 months after we stop turning it… which suddenly changed to 3+ months. I really hoped that I will get it off soon, because my teeth are really very sore and I am getting iritated gums and TMJ from the bad bite and the loose band. Well, nothing can be done I suppose. I will be a good girl. Gah.

And as for the thing I write: I got stuck. I have two great characters and strong storyline, but I am stuck with the settings and the events that happen in the first third, the introduction. I had one quite good idea, but as I say, it was quite good, not brilliant. I am working on another one now, playing the story over and over in my head, writing down notes and pieces of scenes. It seems to work somehow, so wish me luck.

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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

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Ok, I am being really nervous here. The missbehaving band is still on, which is good, but my Hyrax is troubling me. I should have 7mm screw in it, that turns 0,2 mm every turn. Ooook… now, I turned it 37 times. Yes, that means 7,4 mm in total. I am really worried about this and so I kept thinking the whole day if I should or should not keep turning (some call it cranking?).

Just a minute ago, I decided I wont even try to turn it any further. I am worried that the screw could be a mallfunctioning one without the proper safety stop (yes, maybe I am just paranoid), so I wont try to dare my luck and get another “rare complication”.

Now when I think about it… I am a walking rare complication museum for my whole life, lol. Maybe I should charge for entrance. Wait… nah, that would make me a prostitute πŸ˜‰

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Ok, yesterday was a real nightmare that lasted till today’s morning. When my bf came home from work, I was sitting there and shaking, having some sort of shock from another microfracture of the palate. I do not know if I was more scared or in pain or just feeling like the most unlucky being ever, knowing that I feel a lot of pressure on another place of my palate and awaiting another “CRACK!” and everything that comes with it. I did not eat almost anything and could not drink much either after the second fracture forming. Also my cheek got swollen and my right eye hurt a lot.

Seriously, I thought I might die that night and told my bf to call my grandmother and best friend if something happened. Silly, I know. But then, I felt really miserable.

Bf came home and stayed by my bed till I went to sleep. I swallowed another painkillers and tried to sleep, but kept waking up. One of the reasons was the pain, another one was that I knew that another place of my palate will “loosen itself”(as the doc claims) and wanted it to happen while I am sleeping – so I was stressing myself a lot. I woke up at night about 20 times, maybe more. Also sleeping on my back and being scared to turn to the side, as I usually sleep, did not help.

I swallowed another painkiller at 5am and finally fell asleep, to be woken up by bf’s creepy alarm clock at 7am. (I swear I am gonna kill that guy one fateful morning!) I could not sleep anymore, but strangely enough, I could not feel any more pressure on my jaw and the pain was going away as well. Probably, the fracture formed sometime from 5am to 7am when I was sleeping and under Ibalgin. I am glad I did not have to hear another “Crack! Your skull is tearing, just relax… it is normal…” πŸ˜‰

I had a huge dilemma this morning, because I did not brush my teeth for one whole day and night and I should keep very strict oral hygiene, but then the first and biggest fracture came when I tried to rinse my mouth while cleaning my teeth, so I was quite scared to touch them. I knew the doc would scold me if I did not, so I at least brushed them a little, but stopped when it started to hurt.

I took bus and subway to the hospital (took 1 hour because of traffic jam) and got checked up. My doc teamed up with 2 younger doctors who seemed like her pupils and examined my mouth and teeth. She listened to my story about yesterday and saw the paper from the chief doctor (who is also one of my surgeons), but dismissed the idea with “No bones broke. It just does not happen. No bones ever broke in my patients, there is nothing that could break in there.” Ah, uh… yeah, right… I mean, ehm… ok then…

After a while, she agreed there could be some pressure on the bone and the bone could have loosened a little where they did not cut into the end and so the bone loosened till the end and… and… in other words, agreed that there probably are microfractures and the bone broke under the pressure. She said that they would not see anything on the x-ray and refused to do one. But since I feel way better today, I think it wont be necessary. I hope.

Now, my doctor is a scary woman, but she knows what she is doing (even if she has subtlety of a brick). The other 2 docs were probably even scarier in their own way – especially one of them, who examined my mouth and suggested another surgery consisting of bone breaking and another distraction, this time to gain length. My doc smiled at him and said “Yeah, right, this way we create a delightful cleft patient.” Sometimes I wonder, if these docs ever get to operate on anyone… I feel sorry for the poor poor bastard.

Anyway, she explained to them, that she will prepare my teeth for the next surgery using braces and elastics. Then she said we will need Bimaxillary surgery. Ehm… wait! Nobody told me about it! Till I started the treatment, they kept talking only about the upper jaw and Le Fort I advancement. Now… what a delightful news…

So, my plan changed quite drastically. I will need not only Le Fort I on the upper jaw, but also some sort of surgery on the lower one, that will change the angle of my lower jaw. The good part is, that I should not need genioplasty if they do this surgery, because it will turn my chin the right way. The bad is… damn it, both jaws broken and fixated by titanium plates, braces on both jaws for ages… not to mention the whole inside of my mouth full of incisions and swollen. Does not look like a small thing. I have been always scared of lower lip ptosis (my brother and mother suffer from them after their surgeries). I really hope I at least won’t have THAT complication.

Anyway, my screw was turned by my doc and it did not hurt much, so I suppose the bone(s) loosened the right way and it will stay like this with no more complications anymore.

By the way, while seeing my huge teeth with huge gap between them, I am getting a wicked idea about posing with a force cup (toilet plunge?) while screaming “DAAAA!” as a living Raving Rabbid πŸ™‚ Yes, I know it is silly. But it is not so delightfully crazy that one just has to do it? πŸ˜‰

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Ok, today did not go well. Not at all.

I woke up at 9am to brush my teeth and turn the screw. I wanted to go to sleep a little more after, but things went terribly wrong.

As I was brushing my teeth, I felt sharp pain that came with something breaking inside of my mouth with the nasty “CRACK!” sound. The pain became even worse in few seconds and I could feel the inside of my palate move. A lot of pressure, a lot of pain.

I panicked.

At first, I thought the Hyrax broke or one of the rings around my teeth broke or for gods sake at least only a tooth broke…. but nothing of that happened and the pain and pressure did not cease.

I called my bf to work and gibbered something about something breaking and going to hospital, grabbed the few things I thought I might need if they needed to hospitalise me again and rushed to hospital (taking subway and bus, it took about 30 minutes) .

I contacted one of the nurses there and she sent me to chief doctor who was doing consultations in another part of hospital. I went there and was waiting for about 15-20 minutes, thinking that my bones broke and I will need another surgery. It was the worst time of my life.

He had a look at my palate and teeth and listened to my panicked description of the whole incident and then told me, that my bone broke, but that it happens sometimes. He explained, that after they perform the osteotomy, they leave your jaw held by about 4 places – under your nose (where it is flexible and stretches) and on the end of the jaw. The place on my right jaw broke. The pressure from Hyrax broke the bone there. Scary, is it not? But he says it is ok, they call it wing loosening, it happens sometimes, no big deal… right? *nervous twitch*

My fractureΒ Β  candarpain.JPG

To be honest, I am calmer, because I know nothing totally absolutely nasty happened, but then… I do not care if it is ok for the doctors! It is fracture! It hurts! It feels weird!

I did not even have an x-ray and they want me to keep turning the screw. Honestly, when he turned it in hospital (because I did not in the morning, obviously), I felt like crying by pain and now I have to do it myself?

Well, since it is getting late and I am 2 hours late with the turning, I will have to do it. Probably… god I am scared…

Anyway, I swallowed one of the painkillers he gave me to take regularly and am going to turn the damn medieval toruring machine in my mouth.

Wish me luck.

Update: After long hesitationg. I turned the screw. It did not hurt so much. Not the turning itself at least. I am drugged by Ibalgin 400mg and still feel pressure and a lot of pain where the bone is broken. Looks like what happened to me is not as common as my doctor said, but it is a rare minor(-ish?) complication. I suppose he tried to not scare me, since there is nothing he can do with it if I do not want to take the hyrax off, have the bone fixed and then undergo the surgery again. I found some articles about the pressure stressing of cranial base. They are a little difficult (at least for me, because English is not my native language), but give a lot of information that most doctors wont give you.

Stresses at the Cranial Base Induced by Rapid Maxillary Expansion

Complications during Mandibular Midline Distraction

I hope this helps anyone who would have to face any complication that he/she did not know about before.

As for now, I will just relax, drink some good tea, take my painkillers and be a good little soldier.

PS: Oh… and as an delightfull add to today’s misery, I just got my rejection letter from Disney. After month of preparations, writing my entry project that they liked, interviews and such, they choose someone else for the game designer job. Well, that’s life I suppose. 😦

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Sorry for the delay, I was not feeling well. Delayed post surgery shock creeped on me and I also happened to have stomach problems and headache, so I spent most of my time in bed. I just would like to say that this is not a common complication and even doctors were surprised.

We also started turning the screw by 0,2 mm 3 times every day.

I was really scared when we were about to turn it the first time, especially because I overally felt very bad and was not in mood for another pain/nuisance. After the checkup from doctors Thursday morning, they called me “to the chair” (yes, THAT nasty mean evil dentist chair of dread, lol) and my dentist came to instruct me and turn the screw. The turning went strangely smooth. It did not hurt much, but created a lot of pressure on the Hyrax and therefore also on my teeth and palate. I had a really weird feeling in between my front teeth, where the gap was to form later and also felt a little sick from the pressure, but nothing major. Overally, I was happy everything goes so well.

The pressure and irritated feeling stopped after about 2 hours (or maybe I got used to them?) and after 5 hours, I was prepared for another turning. After 4 turns, I was fine and did not get sick-ish from it anymore.

I had to turn it the first time by myself yesterday and to be honest, I was surprised that you have to use a lot of power to turn the screw, yet it does not hurt. I had problem with my Hyrax key (long and good for the docs to use, but not too good for turning the Hyrax on yourself), so an older doctor came and thought out a way for me. I got a tiny finger key that I can quite easily slip into my mouth and direct to the right place just by my fingertips.

A little unpleasant was, when the doc was not sure if we were turning it the right way so far, because my Hyrax is customized and different from the usual one. So he tried to turn it the other way. OUCH! It was not pleasant. It was not nice. It was… well…I could feel the osteotomized bones being pushed to each other. Luckily, he realized it immediately and returned it to previous position. I think I should bite his fingers off or something for that πŸ˜‰

He managed to mess it up a little later again, when he did not realize I have stiched incisions on the inner side of my whole upper lip and lifted it to check it. I gave out a loud “OUCH!” and he winced and said “Oops, sorry.”

But overally, he helped me a lot by checking my palate etc. and telling me everything goes as planned. Also I could have difficulties with my long key, if he did not give me that tiny one and show me how to use it.

So, I am turning on my own now, the doctor just checks if everything is ok. My palate is wider by cca 3 mm by now and expanding. I got a huge gap in between my front teeth and they look crooked, but that is how it will be until they move a little by themselves.

What I hate about staying in hospital is food. I have liquid diet (and will for more 6 weeks at least) and so I am getting really weird stuff. The thing I get for breakfeast is the very same every day. I managed to eat it for 5 days, not anymore. Looks like some sort of very liquid sweet mixture of something in milk. No other flavor except for being milky sweet.

Other food tends to be ok. They usually take what the other patients get for dinner and just mix/mash my portion. The result is usually grey-brown-yellow-ish mixture of strange consistence and even stranger taste, which I usually distinguish as 1) sweet 2)salty 3)salty with something added to it. When the food is mashed into this weird paste, you know what it is, but the tastes are so melted one into each other that it becomes one of the 3.

Anyway, I asked gran for cucumber salad yesterday (very very softly grinded) and enjoyed a tasty meal for the first time this week. I never thought I would be so happy from something as tiny as this.

Another wave of joy came when I realized I can finally move my upper lip again. Yay! I was bouncing around other patients and telling them and showing them, lol. I feel like everything is getting only better now.

If things go well, I will be released from hospital soon. If you have any questions or comments, you are welcome πŸ™‚

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