Monthly Archives: March 2012

The investigation goes…. well nowhere

After the inspiring update from last week, let’s get back to the history and try and get up to date before my next appointment.

After having the first two surgeries, my face was given a year off, to settle. This was when things started to go less than brilliantly service wise with Chelsea and Westminster hospital. I was referred to the dermatology department for them to carry out some studies into the disease. This was excellent news; one of the best things about being a special case is that you normally get the attention of the doctors as they like to play with weird stuff, that’s me. Apparently not so in 2006/2007 at Chelsea and Westminster.

I saw a professor of dermatology who specialised in connective tissue disorders; he was going to conduct research in to everything about me. This sort of happened, but I was never given the interim findings and there were no further studies beyond those findings. I had a medical history done and a skin biopsy, then nothing.  My case and I were shown at the Royal Society of Medicine which was a strange event, I sat topless in a cubical as about two to three hundred doctors walked past me staring, some even did me the courtesy of pointing or poking me, this was a pretty horrible experience, but not the worst of this time.

During my skin biopsy I was asked if the students could look at my case photos. To start with I have students in lots of my appointments, Chelsea and Westminster is Imperial College’s teaching hospital and I’m all for helping the kids learns. I’m also vain so think they were going to see a set of portrait shots I have posed for in the photography studio at the hospital which would give them a good look of my cool hairstyles over past two years. Now if you have a choice between looking at photos of yourself or someone cut into your hand down to the bone, on most occasions you who be watching the slideshow, after about 6 photos I saw a bloody mess. Ahhh they were showing photos of me with face cut off, if you have seen face-off, it is accurate. Now I had never had a problem with gore but my own gore that is disturbing and since that day I have been unbelievably squeamish, I hide my eyes during Holby City. My skin biopsy results were pretty normal to the disappointment of the doctors and this is when the department’s interest in me tailed off, the interim findings suggest I had six more investigation to find out more about the condition, I had none of these, in fact I had no further appointments with the dermatology department until December 2011, when I took the initiative to approach the department again and tell them to sort their act out. Now I can’t fault the new team looking after me, they seem to be good geeky doctors who find me extremely interesting. So project me continues.


I’m a Mutant

This one is coming out of sync, but I’ve had some pretty fandabbydosey news. I had an appointment with my dermatologist on Monday and was told not only has she found me a dermatological disease specialist to take over my case and give me the attention I deserve, but medical research has located the mutant gene that causes my disease. I don’t think I have ever been happier to find out that I’m a mutant; you can officially call me the x-man from now on, or the hero turtle. But to be serious again this is amazing news, I don’t actually know how this news will initially affect me, it will probably mean more tests. The good news is that when I decide to have kids they won’t have it, gene selection already happens, so whoop whoop I am a very happy bunny.


My First Two Surgeries

We now arrive in 2004, time for my A Levels. As I was meant to be concentrating on my education the medical stuff took a back seat, I had a couple of dermatology appointments at the end of 2003 and then in the spring in 2004 I met my FANTASTIC surgeon for the first time. I’m going to throw it out there; the man is pretty big time in the NHS maxillo-facial plastic surgery world. We scheduled my first surgery for the summer of 2005 and then put everything on the back burner, screw the A levels I had a gap year to go on.

So we jump to the summer of 2005, back from 6 months in Mexico, with tragically long hair and lots of bracelets, I had around 6 weeks to prepare to have my face pulled from my skull, yeah I went there. At the time I didn’t really pay attention to the play by play, I have seen face-off and pretty much knew the drill, by complete mishap I have seen the pictures from the surgery and the film is pretty accurate.

The first surgery was a good 7 hours, I slept straight through, so I can’t complain. The incision was from ear to ear across the top of my head, I had over 20 clips drilled into my skull and which would hold the skin in place as it healed and reattached to my skull. I spent about two and a half days in hospital being absolutely off my tits on morphine before I was sent home to sleep sitting up, with drains hanging out the side of my head. Now sleeping sitting up is possibly the hardest thing in the world especially when you have to do it for over 10 weeks. No matter how many pillows you position in this way or that, you will never get a full night sleep; trust me I’ve had to do it four times.

The first operation has been my only experience of an infection, touch wood. It was a pretty horrible infection and meant I was in and out of hospital for appointments with the nurse every 3 days for a fortnight, and lots of puss and oozing. Luckily this wasn’t too bad an experience as my nurse was a very hot Australian. But the downside was the infection caused me to lose some hair, so I had a bald spot to go with a massively swollen head and about 50 metal staples running from one ear to the other. The clips which were now lodged into my skull felt every strange, I still have sensitivity from where a clip was affected a nerve, it used to send an awesome shiver across my skull every time I ran my fingers across it. The clips dissolved after about 8 months and I no longer have that weird sensation, you can miss the strangest things sometimes.

Four weeks after the surgery, I had fought off the infection and had all stitches and staples out, off to university I trotted. Next stop March 2006, Easter holidays from university and operation number two.

This time I had a lateral facial lift, so the incisions were around the ears and my cheeks were pulled back, I’m pretty sure that isn’t the full medical description but you get my point. This operation was just 6 hours and 48 hours later I was at home sitting on the sofa ordering people around. My recovery was much more successful this time, no infections and I didn’t head home with drains hanging out of my head, never a good look. I only spent 6 weeks sleeping sitting up this time around, which helped as I was back at university after just 3 weeks. My head was still swollen, but not the size of a football as it is after surgery, and I had lots of massaging and ointments to help recovery.

I tried to take the surgeries in my stride but in all honesty I was all over the place at the time. I have two major procedures within just over 6 months, and my head and body couldn’t take it. No matter what people say if you have over 12 hours on a surgeon’s table in half a year, your body takes forever to recover. I doubt I will ever get my head around any of this or be able to drill down into details of what happened on the table. (The pun is completely deliberate)