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.