Hand & Finger Arteriovenous Malformations

Hand and finger AVMs fall into the category of "peripheral AVMs". I wanted to write this to give a more personal view and explanation about hand & finger AVMs because I know there's a plethora of scientific and medical resources available online. I wouldn't want to reiterate what's been written by experts and so I have chosen to give a personal outlook instead.

More often than not, hand AVMs begin as a swollen, pulsating mass that may sometimes resemble the actual vessels. I never developed this "mass" until I actually had an ulceration and a bleed, but once I did develop it,  it was often warm to touch and felt like there was very high pressure inside. It would be painful on occasion only but usually just be an annoying, deep, pulsing sensation - I did, however, get used to it after a while.

Surgery on these things is so difficult and the more that's done, the less likely it is that something else will work. I've been told on four occasions that amputation is pretty much my only way out - but to date, I am fighting it and still have a finger, albeit a non-functional one! I've had three skin grafts, a skin flap, and been into day surgery about a dozen times. My experience may differ slightly from the norm as I also have Ehlers-Danlos Syndrome, a connective tissue disease, which makes surgery more difficult in terms of preservation of grafts and the like.

Due to the number of nerve endings in the hand and fingers, surgery can very often be really painful and I've definitely found that out for myself. Especially when fingernails are involved, the pain is frequently a sickening, terrible one and any movement whatsoever under the dressings causes absolute agony. I know it all sounds like a "hell-on-Earth", but with the right pain management, everything will be toned down quite a bit. In terms of my own pain management, I don't often ask for much and usually wait it out, but have realised this to be the wrong approach altogether (still working on changing it though!).

As for bleeding, I've had more than my fair share of it - my most is losing three pints in two weeks. It's important to seek medical help whenever a bleed is bad because massive blood loss is harsh on the body, as I've found out for myself. Whatever the severity of a bleed, if you're not sure that you can manage it, it is imperative that help is sought. Oftentimes, pressure does the trick, but if you're a "difficult patient" like me, then electrocautery or chemocautery should provide some relief, for a little while at least.

I have had many people make fun of my AVM and the situation I'm in, and lost friends through my experience. Many people can't deal with others being different and going through difficulty, and I wish I could explain how I'm really the same person, but I would just benefit from their support! I guess that now, I see things differently and have different outlooks and objectives for myself; and all because of my AVM journey.

Pyramid head man. Spotted again!

So, I've heard people talk about and seen posts about a man with a metal pyramid on his head. I've heard he's usually spotted around Central London; Oxford Circus & Leicester Square appear to be the hotspots but I saw him in a suburb of North West London...

I must say, this pyramid thing seems to have great healing powers. Whatever these powers may be, perhaps I should try it out. I don't think I'd get one, for I am only 17 and would be the ridicule of my school and my peers would never take me seriously again. Besides, as I'm hoping to go to medical school, I don't want people directing me towards psychiatry, do I? Understandably, there's belief behind the obvious wearing of this pyramid, but I don't know enough about it to comment. However, I'm sure others would comment prior to finding out exactly what this contraption is and hence my probable insecurity if I were ever to wear one.

The gentleman I saw was wearing a grey/green smart jacket and... well, the pyramid. He was standing on the bus, quite far from me, supposedly on his way home from work or something. It just seems strange that society has a stereotype of people and that these things stand out. This includes me, but I suppose that these rules are governed by society and anything out of the norm is a bit of a shock. Thinking about it, with more than 60million (it was this figure in 2001, probably a LOT more now) people in the UK, surely we can't all fit into the mould of "human"?

Anyway, I don't want to let my ramblings take over this post. I wonder what the pyramid is all about, how this man found out about it and started wearing one? He seems to be a popular sighting out and about, but surely, somewhere out there there's got to be someone else? Don't let me stop you from telling me all about these pyramids. They may work miracles on my health!

LEMON CUPCAKES!!! Trial baking for my 18th birthday party :)

Here they are: Vanilla sponge and lemon flavoured icing, sprinkled with pink glitter sugar. They're DIVINE! Mum and I made them on Saturday afternoon, 24 of them - they're really quite big muffins... and now there's 2 left!

Glad to have Internet and coming home soon!

So great that I finally have Internet connection on a computer rather than my phone - it's so difficult to type a long blog post off my phone and it wasn't worth posting a short one as I've got a lot to say this time :) Am still on holiday as you guessed but will be home next week. Looking forward to coming home as I am in a lot of pain and my leg ulcer/wound is bleeding a lot and is very fluid once again, unfortunately.

We've been out shopping so much and have bought some wonderful gifts and souvenirs; namely dresses, keyrings and stationery! Having a great time despite the heat; the food is great! Results day was yesterday and the news was pretty good although having to wait till 6pm local time (11am BST) was awful as my father had to call up the school then and let me know of the results! I'm still in with a chance to medical school which is fantastic news and I can't wait to be back to celebrate with my Dad. Missing him lots but hear from him every day so it's not so bad.

Will be going out to high tea today, in a hotel on the 70th floor(!) to celebrate my results. This post isn't as long as I'd like it to be but I've got to be off now to get ready. It's 9am local time and my family is waking up. Post again  later :)

Stress outlet, or procrastination?

I have my last exam tomorrow, and somehow am not in the mood at all to revise. To be fair, I never am, but especially after today when I had my two hardest and most awful exams which have made my day awful. I really should be revising Chemistry right now, but I felt that I should start a blog to document everything important I have wanted to write. 

I've got brilliant friends and people doing this with me, and wanted to commemorate my first blog post to them as without them, I'd be a mess and wouldn't have held it together at all. The next time you want to say "you're brave", think about my friends, and how brave they've been for me. Here's to you:
- My family; thankyou for being there for me and for always coming to see me in hospital, for all the company and brilliant presents you've brought to me and for the unparalleled support I've had from you all. For being my bank, my chauffeur, my waiter and everything else, I owe it all to you!
- To my friends; you're all fantastic and never fail to make me laugh over any silly little joke that started out as something serious or genuine. If I let you, you'd soon make my life spiral out of control as I'd laugh at everything that cropped up, no matter how serious. For seeing me at home and in the hospital, all your messages and kindness, you all deserve the brilliance life brings you! Thanks also for just being there for me (even if it's to rant at) and for being by my side (genuinely) when I've needed a bit of company or just someone. Whether we get caught cheating on a test, escape from educational evenings or have jokes at other people's expense, you're all special and I feel wonderful that you're there for me.
- A big thanks also to my surgeon, without whom I'd be without a finger and without half the confidence and smiles I have now. I've changed from an introvert to (a bit of) an extrovert and also know what it's like to have someone turn up and care for you straightaway. Everything that I accomplish in life, I'll be thinking of the difference you made.