The last time I wrote about the surgery I underwent for my Parry Romberg Syndrome I’d just undergone my 6th or 7th procedure – I’ve lost count! Although it was uncomfortable as usual, it was fairly routine. I’d become used to the process of Coleman Fat Injections in which small amounts of fat are removed from my abdomen – never enough to make a visible difference, dammit! – and then injected into my face to correct the asymmetry. Similar but much more painful reconstruction has also been carried out with fascia lata from my thighs (sheets of connective tissue which attach, enclose, and stabilise muscles) as well as a substance called Alloderm: cadaver skin.
Alloderm is a product produced from deceased donor skin and treated until only the collagen matrix is left behind. It’s like a micro-lattice used to reinforce the weakened tissue of the living which can then form scar tissue around it, until it is eventually reabsorbed into the body. When I worked in mortuaries full time I was frequently a part of what we call the ’tissue-harvesting’ process which refers to skin, bone, tendon etc being retrieved from a deceased patient who has kindly donated it to the living. (Shameful self promotion here but there’s more about the process in my book , Past Mortems, released Spring 2017). What strikes me now is that although at the time I knew the benefits of using donated skin on live patients as topical grafts of for breast reconstruction after a mastectomy, I never knew it could be implanted for reconstructive surgery until I was diagnosed with PRS and we explored all the options.
The staples, the stitches, the pieces of the deceased attached to the body of a young woman of course puts me in mind of ‘The Bride’, made for Dr Frankenstein’s Monster, particularly the version from the 1935 film, below . I often jokingly call myself The Bride of Frankenstein. Despite the humour in that, it’s actually a more suitable trope than I’d originally thought. Parry Romberg Syndrome has a higher prevalence in females and typically appears between 5 – 15 years of age. To be a woman in a society which still places high importance on their appearance (and of course, to an extent, the other sex) and suffer with a condition like this which for me, appeared in my turbulent teens, has caused problems that I never would have anticipated. But I don’t just mean physically, I mean mentally. And I also mean the guilt. I constantly ask myself the question “Am I just being vain?”
There are so many lovely people out there, as well as my family and friends, who say, “But why are you letting them do this to you – I can’t notice anything wrong with you?” or “You’re beautiful, why do you need surgery?” But for every person who says that there will be a stranger who asks me “Have you been in a car crash?” or a colleague who says, “Oh you were born with a cleft-lip, weren’t you?” and it’s that which leaves me feeling cold in the pit of my stomach. (Those things have actually happened, I’m not making that up. I mean who says that to someone’s face?)
Then every now and again I might post a selfie on social media because I caught myself at just the right angle; because for one day out of so many others I don’t hate my face and myself and I feel like sharing that happiness with the world and showing others with PRS that they don’t have to hide either. Thank you Instagram filters! But then I’ll have someone post that I’m attention seeking or vain….
But I realised it’s not about vanity, it’s about familiarity. Of course everyone has times when they want to look their best – maybe for a job interview or a date or their wedding – and I suppose to a certain extent I want to look ‘my best’. But I wasn’t born looking the way I look now and I didn’t grow up that way, it crept up on me over the years. Despite having PRS for around 15 years my brain still doesn’t register it so when I wake up in the morning I’m taken aback by what I see in the mirror. I don’t have these surgeries to ‘make me beautiful’ – that’s not the aim. I simply want to look in the mirror and not see a stranger, I want to see something familiar: a friend.
After this most recent, more complex surgery in which I had two calvarial bone grafts removed from the top of my skull and implanted behind my left eyeball to push it forward, there were complications. What should have been a routine surgery ended up with me being rushed into a second emergency surgery to have some of the bone extracted due to increased intra-cranial and intra-ocular pressure. After two general anaesthetics in four days (and a lot of morphine and codeine!) I had time to lie there and just think – and I decided to stop chasing the phantoms of the past. No more surgery. It’s time to start making friends with the face I have now and stop putting myself under extreme pressure and great risk just to try to resurrect a young woman who symbolically ‘died’ in her teens the minute this condition began to take over.
I’m a chick, I work with the dead (closer than I ever thought I would!) and I’m happy to be a true Bride of Frankenstein. I’m lucky for the life I have and what my surgeon has achieved so far – there are many people out there with far more serious PRS symptoms than mine, and of course many others with life-threatening conditions. It’s time for me to move on and help others with the same issue who need advice so anyone who needs to feel free to contact me via this blog until I get something permanent set up. And it’s time, of course, to say a huge thank you to everyone who has supported me: both the living and the dead.
You are lovely inside and out. It’s such a personal decision isn’t it? The very best of luck to you. My daughter donated two ribs as part of her surgery to correct kypho-scoliosis and she is very proud to have done so. Kudos to everyone dead or alive who contributes to these tissue banks.
Thanks so much! I wish her all the best x
Hi. I love what you wrote. I’m going through the same thing and having my first surgery in January. Thank you for making me feel better!
Good luck with the surgery! X
I hope it all goes well for you and thank you for taking the time to read and comment x
Thank you for writing such an interesting piece and I hope your recovery is swift. I had to have both of my jaws reconstructed, radically altering the look of my face, so I had to learn to recognise myself again and it took 2 years for the swelling to eventually go down, so while the many operations I went through don’t sound nearly as hard as what you have had to face, I do sympathise and I hope that you are able to help any PRS sufferers 🙂
Thanks so much and I really do hope it’s getting better for you xx
A very interesting read & I wish you a speedy recovery 😊
Myself & my sister have attended a few of the events at the museum, we love them! We have offen sat there and said how pretty you are, ignore those who lack tact & kindness they’re the ugly ones. X
Oh I’m so pleased you’ve been to the museum! Hopefully I’ll see you at one of this season’s events. And thanks!
Thank you for this post! And though I can not imagine what you’re experiencing, I am sharing a nice little quote I’ve just heard (turning 30 makes you pick on these kind of things): “The flowers of Yorkshire are like the women of Yorkshire. Every stage of their growth has its own beauty, but the last phase is always the most glorious.” (via The Calender Girls)
I love your face and I miss it! (Tommy D from BCI)
PS – found the Scroobius Pip podcast awhile ago and loved your episode.
Hahaha Hi there!Thanks for the support and listening to the podcast. Hope all’s well and I’d better see u at the museum soon! X
What a beautiful lady you are. Go forward with pride! I loved your post and will be reading all of them now. I can’t wait to visit.
Beautiful piece, by an equally beautiful woman ❤
Thanks so much! 😘
I admire the strength that goes into just believing in yourself and being you. If that means you decide to forgo other future surgeries, you are being you.
If you decide later to have another surgery that makes you brave. And helping those that have various levels of PRS is amazing. You do it already in your blog and being truthful.
To me you are strong, brave and selfless. (Bravo!)
Looking forward to see Bart’s one day when I get across the pond. 😁
Get well and have a great week!
Thanks so much! Hopefully I’ll be across the pond next year when my book is out 😘
That, I look forward to! 😁
Gosh. I’ve always thought you are beautiful. I also have issues with my face, I rarely like myself (I find it really difficult to take selfies because I never like them), and so many times I look at others and go ‘I wish I looked like that person!’ And you are one of them. I guess there’s a lesson here – you never know what goes on in other people’s lives – but also, you’re beautiful just as you are. Cliched, but, I think, true.
I really admire you, keep on being you. xx
Thanks so much! Really appreciate that 😊
Wow! I’ve been to several of your amazing events, and seen a video of you discussing post- mortems at the Wellcome Collection. I admire you for what you are doing for Barts Pathology Museum, and for giving us opportunities to think and talk about death. I’m so sorry you are going through this surgery. I hope very much that your courageous quirky spirit endures. I recall your lively presence and fearless imagination, and look forward to being able to get to future events. Well done, bravo and thank you.
Thanks so much everyone for the lovely comments – it means so much when I’m feeling low and just wanting to get back to work and not let people down! 😘
Hope you’re back to work soon, Carla. I found your blog post so informative about a condition I’d never heard of. I was particularly interested in what you said about wanting to see a familiar face in the mirror, I know my sister struggled with the same issues after a major car accident. Whatever you decide to do about surgery in the future I hope the twinkle in your eye will always remain the same.
Looking forward to more events at the museum this autumn! Wish I’d been quicker and got more tickets, they sell out pretty quick!
About three years ago, I was diagnosed with Parry Rombergs after some pretty intense atrophy due to a strong topical steroid on my face (long story). After being monitored for a couple of years, and having no further atrophy, it has been decided that I likely don’t have the disease (and/or it is not active). I have had multiple fat grafting procedures, but am still dealing with scarring and bad skin atrophy. I’ve been told that Matriderm may be an option if fat grafting and needling don’t give enough thickness back to the skin. I am wondering if you could kindly email me regarding Alloderm. I’ve discussed it with my surgeon here. Kind regards. You are beautiful, but even more importantly, talented, ambitious and intelligent.
Hi Jennie, thanks for your kind words. Re: the Alloderm it’s a bit early to tell how that is doing. Unfortunately, if you google it, it does exolain that it’s absorbed into the body as scar tissue is formed around it. With ‘normal’ people that’s probably fine but with us it may just disappear 😦 I’ll let you know when I know more! X
I came across your Blog when searching for Parry Rhomberg, your story sounds so similar to mine- facial trauma, migraines.. I am really struggling to find a Doctor that knows a lot about the condition and I seem to just get passed from specialist to specialist with no solution. I have been privately seeing a plastic surgeon for the last few years and I am going to have an operation next month similar to your fat transfer and also a dermal graft. I know there is nothing that can really be done, but it would be nice to talk to a doctor to confirm a few things. Can you point me in the direction of who diagnosed you? Thank you so much for sharing and you are absolutely beautiful x
Thanks so much! I hope your operation goes well. My surgeon is Mr Mehmet Manisali and he is based at St George’s Hospital in Tooting, London. He is somewhat of an expert so if you contact the Maxillofacial Clinic there they may be able to put you in touch. Good luck! x
Thank you so much! I think another surgeon had referred me already so that’s reassuring ☺️ x
I cannot believe that someone actually wrote that to you on Instagram. Well, I’m not sure you’ll miss having them follow you anyway! 😉
This was a really interesting post and I knew nothing about PRS before reading, so thank you for educating me! I know this was a few months ago now so I hope your recovery went well.
Hi, hope you’re welll! I relate a lot to your story as I suffer the same condition. I’ve had fat injections in the past but now after sometime the fat gone away. So I’m looking for a new doctor to treat me as last time I was treated abroad.
Could you pls let me know if you do your treatment with Dr Mehmet Manisali private or through NHS?
I’m wondering how much would be the fat injections.
I will contacting him asap.
Thank you very much
It’s hard enough coming to terms with ones “imperfections” under “normal” circumstances and a lot of people never will. Finding this acceptance with a condition that visibly changes your appearance beyond the normal aging process is huge thing. Keep doing you!
First off, let me say that I just stumbled across your blog, and wish I’d found it sooner! Love it. I have PRS too, and have had several surgeries in the past as well. Mostly, the PRS has absorbed whatever I’ve had done. Best procedure, although amazingly painful, was to have my lips tattooed “back on” on the right side (since the results of fat transplants and V-Y advancement surgery didn’t last).
The other thing that was really healthful for me was to meet a couple of other people face-to-face who also have PRS. (Very different than looking at still photos of others.) For years, I listened to friends and family who insisted that they didn’t notice that my face was crooked. I flat-out didn’t believe them. It’s all that I see when I look in the mirror, and it certainly leaps out at me in nearly every photo I see of myself. However, when I met other people with PRS, after the novelty of comparing the similarities between their faces and mine wore off, I realized that I really, truly, honestly did forget all about the asymmetry in their faces. That, in turn, led me to believe that just possibly, my friends and family weren’t being polite when they said they didn’t really think about my face looking like it had been Frankensteined together…. Anyway, made me feel somewhat better about myself and them.
Thanks so much for this! Really appreciate it – it puts things into perspective xx
Hi Well done for starting this blog. I have had two different diagnoses, one was PRS the other was Horner’s Syndrome. The specialist can’t agree on what is wrong! I have also seem Mr Manisali at St Georges, had two ops, the second one was suppose to correct what they did wrong the first time, the jury is still out if it has improved matters or just made it worse. I had some fat injected in my upper eye lid three weeks ago and had the familiar staples along my hairline near my temples. Over the past couple of days my right cheek seem to have swollen up and if I smile I look like a clown with big fat cheeks. I do hope that diminishes not sure if its fluid build-up. Back to the hospital to see him next Wednesday so see what he says. It is not an easy condition to deal with because one thing you can’t hide is your face!!!