Facial Asymmetry (Hemifacial Microsomia) - Maxilliary Osteotomy & Open Rhinoplasty Surgeries

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*Treatment results may vary

** Please note - the photos I have loaded that...

** Please note - the photos I have loaded that have "before & after" images have been manipulated in Photoshop by me. This is simply me playing around to try to figure out what to expect from surgery, and honestly, to give myself hope. These are not predictions drawn by a surgeon.

I'm going to pretend that this is not a page on the internet, available for everyone to see. I'm going to pretend that this is my personal journal, a place where I can reconcile my thoughts. With that said, where to start? At the beginning, I suppose...

I've been unhappy with my appearance for as long as I can remember, for one reason or another. Teasing in school drew my attention to my freckles, further teasing drew my attention to ears that stuck out, and when I was a little older a boyfriend's mother drew my attention to my crooked nose. I'd always thought it was too big for my face and didn't like it from the side, but I'd never actually noticed it was crooked. From then on, like all the other little things I learned to hate about myself, I couldn't un-notice it. Now, it seems crazy to think that there was ever a time that I didn't notice how crooked my nose is.

As I got to my mid 20s, I was learning to accept certain things about my body. I didn't mind my freckles anymore, couldn't care less about my ears - they didn't really stick out much anyway. I learned to accept my tiny boobs - I think they're even smaller than A cups - and decided that if Kate Moss and Keira Knightly can rock their teeny boobs then so can I! Plus it's easier to find well-fitting clothes, and they won't go all droopy... not for a while, anyway. I didn't even mind my crooked teeth anymore (despite orthodontics in my teen years, one front tooth still overlaps the other).

I had finally gotten to a place where I was relatively happy with the person I saw in the mirror... so long as I was wearing make-up and had my hair done. But there was a problem. Photos. The person in photos never looked like the person in the mirror. She looked awkward at best, and, at worst - ugly, mangled... ridiculous. There was only one angle of my face that I could show in photos and not look terrible - the left side of my face. My nose looked big from this angle but at least it sort of looked straight, and my jaw line looked straight too. Somehow, my teeth looked better from this angle too.

My self-consciousness about my face was constant. no matter where I was, no matter the situation - in the back of my mind I was constantly conscious of my face. Conscious of the fact that everyone to the front or right of me would be looking and wondering why I looked so ugly. Wondering if maybe I'd been in an accident. Maybe they were wondering if I was aware I looked like that. Or maybe, worst of all, they just always knew that I was a reasonably nice, kind of funny, ugly girl. So when they saw me from any angle that wasn't the only one that I'd show to a camera, they weren't surprised. That was just how I looked. This thought horrified me. Still does.

Now, I'm no model, nor do I aspire to be one. I don't want to be on magazines, or be oo'd and aa'd at at parties. I don't want to be the prettiest girl in the room. All I want is to not be the ugliest girl in the room. I want to not be constantly thinking about how I look. I want to laugh and not immediately have an image in my head of a photo I once saw of myself laughing, looking basically, like a mentally disabled person. I want to have confidence when I smile. I want to not cry at the mirror. I want to enjoy having my photo taken, especially seeing as I'm a photographer but have never had a photo shoot myself. I want to go on holidays and take stupid touristy photos, without turning my head to the same side in every single photo, and still end up looking disfigured half the time. I want to, one day, meet a wonderful man and marry him, and look beautiful in my wedding photos, and spend the day focusing on him and not on how I look. I want to not settle for less, as I have in the past, because I believed I deserved less.

So I emailed a surgeon in Perth...

I'm originally from Perth, Australia, but nearly 2 years ago I moved to Phnom Penh, Cambodia. I've been having the time of my life here, doing fulfilling work and being inspired daily by amazing people. But I'm still held back, every day, every moment, by my overwhelming consciousness of how I look. It seems like such a ridiculous waste of energy. It's a terrible waste of precious time, like I'm bound at my wrists and ankles, waiting for my real life to start. I'm surrounded by people, dear friends, who've overcome incredible challenges and injustices in their lives. Daily I see people struggling with the basic necessities of life, and suffering in circumstances that I cannot fathom. I see people filled with faith, a faith that overcomes demons and renews lives. None of it makes me feel better about my face. I feel the same way about my face, and worse about my self as a person for feeling the same way about my face in spite of being showed, vividly, how blessed I am.

Here's the thing: a person's hurt is their own. Perspective is a wonderful thing and I've gained a lot of it during my time in Cambodia. Perspective tells me that my ugly face is a ridiculous and irrelevant thing in the grand scheme of the world. But it's still the same to me, in my little world.

... The surgeon returned my email. Here is a quote from the email:

"This patient has hemifacial microsomia (Facioauricularovertebral spectrum). Nothing can be done to correct her facial asymmetry unless she wants lengthy and multiple procedures to move around her teeth and then her upper and lower jaws. It is possible to camouflage things with a combination of chin and jaw implants and by moving her chin (geniosplasty). The nose and cheeks are impossible to completely correct due to underlying soft tissue deficiency."

Not the happiest email I've received. Of course my next step was to jump on google and search for photos of hemifacial microsomia. What I found was a lot of photos, particularly of young children, with clear examples of the condition. Most of them looked much more severe than me, but it was immediately obvious that I shared the same condition. I could not believe that I hadn't realised it earlier. I was 27 years old and I'd never realised that the whole right side of my face was smaller than the left, that my mouth was twisted to one side of my face, that my jaw line was completely crooked and twisted, and that my middle teeth were nowhere near the middle of my face. I remembered a moment in art class at high school when I was sitting at a table with some girls and we were all light-heartedly teasing each other, and then one of them said to me "at least I don't have a mangled face". Looking at the photos the surgeon had me take, and reading his email response, I finally understood why she had said that.

So, if you've read this far - there it is. The surgeon said it would not be possible to completely correct my condition, but I was never aiming for perfect. My remaining option was to attempt to camouflage the condition. So that's what I want to do now.

I've researched plastic surgeries for years, primarily rhinoplasties. In the past 6 months I've extensively researched hemifacial microsomia and corrective surgeries. There are options, but they are extremely expensive and usually performed over many years as a child grows. As far as camouflaging this particular condition goes, I'm a little in the dark. I haven't been able to find much information and very few examples of plastic surgeries. So, this is one of the reasons why I decided to share my story here. I can't be the only one in this position - hemifacial microsomia is the second most common birth defect after Down syndrome. If you're in the same position as me, I'd love to hear from you.

Here my surgery plan:

* Yanhee hospital in Bangkok, Thailand.
Australian hospitals are way out of my price league - I currently receive a volunteers allowance and no salary, and will be saving up for surgery through photographic work... assuming I find enough of it here.

* I have made contact with the staff at Yanhee and I am waiting for feedback from surgeons, and final price estimates. So far, the prices I'm looking at are (based on their website and online consultations with staff):

*Rhinoplasty - $1500USD (I don't know yet if this includes Septoplasty)
*Mandibular Implants (Jaw) - $1700USD
*Neck Liposuction - $1300USD
*Allowance for extra procedures recommended - $1000USD
*Skin treatments for acne scarring & skin tag (associated with hemifacial microsomia) removal - $500USD

In addition, I've allowed $1000USD for flights and accommodation, giving me a total budget of $7000USD. It seems completely out of reach, but all I need to do right now is start. I am aiming for a surgery date in October 2014, which gives me 7 months to save... $1000 a month. That's a huge task. I better find those photography clients quickly!

I'll update this page when I hear back from the surgeons at Yanhee, hopefully with good news.

Thank you for letting me process my thoughts on here, and thank you for reading this far. I hope to show you the real "after" photos in 8 months time, and I'll be thrilled is they look even half as good as my lame Photoshop predictions!

Title... hmm.. Photos? :)

I may have used my photography skills for evil - I have Photoshopped these images to give my surgeon (and myself) an idea of how I could look after surgery. I have no idea how realistic I'm being and I know I could be giving myself false hope, but the way I see it, it's just hope.

And I cannot believe that I'm uploading terrible photos of myself to the internet for all to see, sans make-up (except for eyebrows!) and all. Forgive me, future self.

Quick update - hopsital changed & surgeon chosen!

Just a quick update - I've decided against Yanhee hospital. I still think it's a great hospital, but I feel that the jaw/chin correction is too complicated and I would like to go to a specialist. Bumrungrad hospital (also Thailand) had always been my preferred choice, however it was just too expensive for me. After further research and reading the profiles of their doctors, I found Dr Nond Rojvachiranonda. He specialises in craniofacial surgery and has been a bit of a pioneer in surgical techniques in Thailand. I have read extensively about his work and have a lot of confidence in his abilities. (and yes, I have seen the webpage set up by a patient of his claiming that he was negligent. I'm not naive but I think it's obvious to anyone that this patient is after money. One big tell-tale sign - they claim negligence but don't give photos of the so called "botched surgery" and don't describe it the issues. Plus, they do kind of come off as a bit of a raving lunatic! I've done a lot of research on this doctor and I'm not worried at all - at least no more worried than if I was having surgery with a top Australian surgeon!)

So, anyway! I found that Dr Nond operates at Bumrungrad (super exclusive and out of my price range) but he also operates at St Louis hospital. A "middle class" hospital that has the same surgical standards but just doesn't have the 5-star hotel service - I live in Cambodia so this is fine by me! ;) The rates at St Louis hospital are much lower, so this means I can have a highly specialised surgeon for Yanhee hospital prices. Good stuff! I'm going to Thailand in July to meet with Dr Nond for a face-to-face consultation so that he can properly assess me (rather than just looking at photos) and I will go from there.

I'm getting really excited, and working very hard to save money for this. After all these years - it feels like this is finally going to happen. I can be in a photo without cringing! Speaking of photos, I took some selfies last night and I like them so I'm sharing them to make up for the make-up-less photos I posted last time ;) x

More photoshop fun

Well, I don't have an update to post as I'm in the waiting & saving $$ part of this journey at the moment! To remind myself why I'm working so hard and living off bread and instant noodles I did some more playing around with Photoshop. So here comes another edited 'before & after'... again I'm so embarrassed to post the 'before', but I hope by Christmas I'll be posting the real 'after'! x

There's hope... but it'll cost you!

Well, it's been a while, Realself! I haven't updated in a long time, but that doesn't mean that I don't think about surgery every day. I simply haven't had any news until this week. Despite barely having saved anything towards surgery (I'm a volunteer in Cambodia - it's wonderful but not so good financially!!) I made a Skype appointment with Dr Nond in Bangkok. I talked with him earlier this week and it gave me hope that something significant can be done... but it'll cost me! It's more expensive than I had even imagined. I'll start at the beginning:

There are a few names for the condition that I have: Condylar Hyperplasia, Hemifacial Microsomia, or just plain old Facial Asymmetry. I haven't had a firm diagnosis on exactly what's wrong with my face, but everyone agrees there's certainly something! Dr Nond was lovely, friendly and relaxed, didn't rush me, seems to really know his stuff. The only issue was that, thanks to my dodgy Cambodian internet connection, the Skype video wasn't very clear and he had to refer to my photos to see my condition.

Here's the surgical plan: There will be 2 main surgeries, about 6 months apart. The first is the most major surgery, a bimaxillary osteotomy, sometimes called double jaw surgery. Basically my entire lower jaw will be cut and separated from my upper jaw. It will then be rotated into the correct position and screwed/wired in place. It sounds like it's gonna be a painful one! But I'd endure years of pain to fix this condition. The jaw remains wired shut for a period of time (I don't know exactly how long yet) and then it's just up to me to heal for a while until it's time for the second surgery. The second surgery is an open rhinoplasty - this is primarily to correct my deviated septum but will also reduce the slightly bulbous tip of my nose. I do also have slight breathing difficulties through my left nostril - just little things like when exercising I have to breathe with my mouth open. To be honest it doesn't bother me that much, this is really about correcting the facial asymmetry.

During the rhinoplasty surgery Dr Nond will also make any necessary adjustments to my jaw line and cheek bones (my right cheek bone is quite a lot smaller than the left). There could be a need for a small implant or bone graft to be added to my right lower jaw (not only is my lower jaw twisted and offset, but it's also under-grown so even after realignment it will probably still be smaller). The better option, rather than an implant or graft, would be fat transfer to the right lower jaw and the right cheek bone. Dr Nond said this would be his preferred option as it's less risky (higher chance of infection with an implant) and should still provide a natural and balanced look.

So, big question - how much will all this cost? Well, Dr Nond operates at Bumrungrad Hospital (fancy, 5 start hospital) and St Louis Hospital (he calls it "middle class") as St Louis has the same surgical standards as Bumrungrad, you just get less of a hotel experience, I'll be going there. The costs:

* Bimaxillary Osteotomy (double jaw surgery) - 384,000 THB, just over $12,000US. I know, right?!
* Open Rhinoplasty - 122,000 THB, just under $4000US.
I don't have an estimate for any additional procedures like fat transfer during the second surgery, but it will be comparatively minimal.

These prices are inclusive of everything, hospital stay, drugs, etc, but still - we're talking about $16,000, and that's before I've flown to Thailand and paid for accommodation and expenses for however long I'll be there recovering. I've checked out prices in Aus and they vary a lot, but the cheapest I can find is at least double.

So, I earned $250 this month doing photography work, and I'm setting myself the task of somehow saving more than $16,000 for surgery. Ridiculous, huh? And I can't believe I'm posting this on the internet for all to see! I guess I just need to get it out. There's lots of frustration in here.

I had a new little flicker of hope this week while browsing the Realself stories - I came across a young woman who has the same condition as me and who had both surgeries done in Australia. The comment that caught my eye - both her surgeries were completely covered by insurance! Whhaaat?! I've always thought that private health insurance never covers plastic surgery. I frantically began searching the web and emailing surgeons, the Australian Plastic Surgery Board, and the Realself poster. I looked at the fine print of insurance providers. Couldn't find anything answers on this, pro or against. The woman who posted on Realself replied to me today and explained that because this surgery is not considered elective surgery, it's reconstructive surgery on a medical condition, she was 100% covered! This has given me a whole new hope - how did I not know about this a year ago? 5 years ago? Gosh, that makes me so depressed. Could it be possible that I could have actually enjoyed my 20s without being plagued by this face, but rather just had the normal one that's underneath?? If I think about wasted time, wasted youth, too long, it just makes me angry. I don't want to be going through this again at the end of my 30s.

You know, sometimes, it doesn't seem fair. Sometimes I get cross with the people on here who are whinging about wanting more perky boobs, or fuller lips, or liposuction... I KNOW I shouldn't judge, but I do sometimes. I have plenty of things that I could get "fixed" I have pretty awful freckly skin, and I have no boobs at all. I mean, less than an A cup. But a few years ago, I just kind of accepted them. I don't need perfection. I just want to be normal.

Then I remember that I have two arms and legs, 2 good eyes and 2, hmm, goodish ears (they're a little dodgy, that's another story!). I was born in a truly wonderful country, I have a loving family, and man I miss them right now... what right do a I have to complain about being born with this asymmetrical face? I have no right. I have too much to be grateful for to complain. To whinge that it's not fair. Really, it's not fair to have stunning sisters when I go through life looking like I've been in an accident. But life isn't fair, and it's far less fair for many other people than it has been for me.

I have a young Cambodian friend suffering from chronic rheumatoid arthritis. Not only is she in daily agony, she can't drive her motorbike because she can't grip the handlebars; she can't cook dinner for her husband because she can't hold a knife; she can't type and she can't hold a pen properly. She spends $100 out of her $350 a month income to pay for the drugs to treat her, and to receive the awful side-effects of said drugs. I wonder if she'd swap her pain for a bit of facial asymmetry? I don't know. I guess there is more than one kind of pain. I think that her pain is greater than mine, and the hand that she's been dealt is more unfair than mine... but my pain is still my own. It's not diminished because of what someone else is going through. It reminds me to be more grateful for the multitude of blessings that I do have, and when I get these surgeries I'll be grateful for that too.

I don't know how I'm going to do it. I'm trying to work out if health insurance will apply to me. It could mean that I would have to choose between staying in Cambodia or going back to Perth, so I can have health insurance, wait out the waiting period (probably a year) and get the surgery. I just don't know right now. I really wish that I could just let it go, be content with the face I have. Sometimes I think I could, but then I realise that when I feel that way I'm not "accepting and being content", I'm "giving up". And I don't want to give up on myself. I want to live a full life, in all areas of life, why not in the way I look?

I thought I'd feel better if I wrote it out here, and used this as my online journal again. But I don't. I really don't feel better. I feel hopeless.

I hope I can update again with something happier to say. I'll say this: there is hope. And I'm absolutely believing for a miracle of healing for my friend. xxx

A few points I missed

Got a little carried away in that last post and forgot a few things :)

* I don't know yet if there will be anything required to fix my teeth after the surgeries. I had braces as a teenager so I have relatively straight teeth, but they don't line up at the front (middle of my two front teeth are not inline from top to bottom) and my bite doesn't close together. Hard to explain in writing, but basically when you close you mouth, your top rows of teeth and bottom rows should touch - especially at the sides, the molars. Mine don't do this now, with the misaligned lower jaw, but they almost do on the left so I subconsciously chew on the left. When I try to pull my lower jaw inline now (I can't do it exactly because it's still twisted and undergrown on one side, and I can pull it from right to left) the top and bottom rows of teeth are no where near each other. If this was the case after the surgery then I wouldn't be able to chew food. I will need to find out more information on this, but I suspect that the doctors wouldn't be able to speculate without me at least getting some x-rays.

* I've been enlightened to some life-long ear problems. It turns out that the good old hemifacial microsomia could be the culprit for my awful earaches that I had as a child, and for a condition that I have now which is commonly known as "glue ear". Basically the fluid that exists naturally in my ear doesn't drain where it's supposed to so my ears feel constantly blocked. It's like that feeling when you go up or down in an aeroplane and your ears pop - except my ears never pop. It's caused hearing loss and causes me to have a semi-conscious twitch of my jaw. The twitching of my jaw equalizes the pressure momentarily but then it's back to blocked, foggy ears. The procedure that could fix it is simple grommit insertion into the ears, but the surgeon said that may actually not fix it in my case, it could be attributed to the wonky jaw (he didn't use the term wonky jaw, exactly...)

* Headaches. I never used to get headaches... unless I hadn't drunk enough water... or I was hungover. In the last couple of years I've been getting frequent tension headaches. The begin in my neck, travel up my jaw, go around my ears and up to my temples. Tension is the best word to describe it. massaging my neck, jaw and temples does wonders, but the tension comes back immediately as soon as I stop! Dr Nond said that surgery could stop these headaches, but that it may not. I don't really understand why not.

Lastly, I'm going to be a bridesmaid! Fills me with joy and dread at the same time. Joy, because my big sister is marrying the man of her dreams and I'm honoured that she asked me to be a bridesmaid. Dread because it means photos. Photos that I would love to look beautiful in, but because they're not going to be taken by me as a selfie on my iphone but rather by a professional photographer with a DSLR camera, I know exactly what I'm going to look like. I'm already trying to prepare myself for it so on the day I can just focus on my sister and ignore the camera. The wedding will be in about 4 months. Even if by some miracle I got the first surgery next week, I'd still have the crooked nose in the photos. It's one of those milestone moments - bridesmaid at my sister's wedding. Photos that will be in our homes forever. Hmm.. I wonder if the photographer will let me photoshop my face ;)
I'll get all this worrying out here, because when the wedding day comes, I am a bridesMAID and nothing else matters!

One more!
* Insurance questions - I have been advised by the Australian Board of Plastic Surgeons... or something along those lines... that the surgeons themselves will be able to advise me as to whether my condition is covered by insurance. I suspect there would be some overheads or a gap to pay, but if it's less than $16,000 that would be alright, eh?! A downside would be that I imagine there would be a waiting period (before claiming, after signing up) of at least a year. But if I'm honest, I doubt I'd be saving $16,000 before that year was out either so the sooner I start, the better. But that means leaving Cambodia. Ohhh, for goodness sake. I'm going to bed! Goodnight, internet land xx

Pondering Compromises

It's now 3 months since I had hoped to have these surgeries done but alas, barely a dollar saved! It's just completely unrealistic that I can save this sort of money while continuing my work in Cambodia, so I'm faced with a few options:

1. Move back to Australia, earn a proper income, and save save save!

2. Move back to Australia, as above, but also invest in private health insurance. I have confirmed that at the very least the double jaw surgery would be covered by insurance as it's correction of a birth defect, however I haven't been able to confirm whether the rhinoplasty would be covered too. I'm pretty sure it would be as it seems to be part of the same condition, but I'm not sure. Plan would be to save up for the rhinoplasty (the much cheaper surgery) and get that done by the same surgeon in Thailand, while waiting out the waiting period to get the double jaw surgery done in Australia and under insurance.

3. Stay in Cambodia and hope for a miracle! I've been trying to build my photography business here and who know, maybe it will take off?!

4. Move back to Australia and get finance to cover the surgeries - easy option. Not very responsible, but I'm desperate, and increasingly impatient.

5. Stay in Cambodia and make some compromises about the procedures I have done. I think that the feature that bothers me most is my crooked/twisted and large nose. I think this is the most obvious part of my condition, unless my head is tilted back and people can see my jaw line from below, and it's bothered me my whole life. This is a significantly cheaper surgery and I think it would still boost my confidence immensely.

In lieu of option #5, I went back to good old Photoshop and edited some images to only correct my nose, not touching my jaw, neck or cheekbones. I also edited the skin between my eyes and on my forehead to remove acne scarring and some moles. Of course, the photos were taken from good angles where my asymmetrical jaw is not that obvious, but I just wanted to give myself an idea of how I might look correcting just one of the issues. I think - just based on these edited photos - that a smaller, straight nose would completely transform my face. It's also a droopy nose that pushes down on my upper lip so I think my upper lip would appear a little bit fuller too. This surgery is estimated at $4000 (at St Louis Hospital, Thailand, with Dr. Nond), then perhaps $500 for skin treatments and $1000 for flights and accommodation to Bangkok (there's a small blessing - it's cheap to fly from Cambodia to Thailand!!) So, conservatively looking at $5500 to be saved, compared to about $17,500 for both surgeries. Still a huge amount for me to save, and I've been desperately scouring the internet for ways to raise this money, or looking for loan providers who would lend to me, but no luck. It's just getting really, really depressing. I'm so ready to just get this stupid face straightened out and get on with my life!

So...! These are the options. I really feel like I'm not ready to leave Cambodia yet, I still love my volunteer work and I've worked so hard to get the photography business going - it feels like it might be just about to break through and start getting busy. So, now that I've written this all out here (and I'm still pretending that this is just a journal and no-one can read it because, gee, embarrasing!) I feel like I can focus on a new, slightly more achievable financial goal. Save $5500 for the rhinoplasty/septoplasty and do the double jaw surgery later in life.

I'd like to finish with one thought - that is that despite the pain (emotional and physical!) that this birth defect has brought me, I am still very fortunate and grateful to have great health. There are so many people with this condition and with others, or who have suffered accidents or illnesses, who are much worse off. I do try to remind myself of that regularly, and be grateful for the things that I do have.

Thank you, random internet strangers, for allowing me to process my thoughts here. I always feel better after a post and a little cry!
Dr. Nond Rojvachiranonda

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