Lately i have been receiving treatment from the NHS for my facial AVM, my AVM started many many years ago but was so small i never bothered, but in the last few years it got to a point it was causing issues, so was referred by my GP to so called NHS specialists.
Anyway over the last few months i have had some work done, as i was told i had to, so went ahead with embolisation to my lip where the AVM was, it was huge tbh. So had ONYX pumped in for 5 hrs + under general, all went well, but the next day was to be plastic surgery to remove, my nerves got the better of me as the surgeons kept coming in telling me all the horror stories, so i decided to go home.
This normally would not have been a major issue but where the ONYX had been put the skin was extremely thin ( my lip ) so the ONYX started to burst out of my lip, leaving me in extreme pain, so much so i was readmitted to hospital for pain management, nothing worked, i was sent out told to basically wait till my lip died due to the necrosis, shocking i know.
As this was now an open AVM which had the potential to bleed i was in all honesty scared, as i was also told if it did bleed to get to the nearest A&E again shocking i know.
This did happen and was rushed to hospital, and kept in, following i started to hemorrhage so badly i was told i must have emergency surgery firstly to stem the bleeding it was that bad, told also life or death surgery and that i may not make it, scary times.
I came round thankfully and all looked good including the plastics that were done, time went by but the stitches all burst, back and forth to all i can say lip service, as they said they could not restitch, i understand this but now the very place the surgeon had been operating was wide open, and was at least 6-7cm wide by 2-3cm, i was petrified, but was told let it heal, i did and amazingly it did close to a point, but am left with a slight gap, i aint complaining.
But now i have what looks like ONYX coming out again ,and an exposed area where they had operated, i am so scared this will burst open again, and that i will bleed profusely as i did before.
My point is i feel very left down by the inexperience of the people whom have dealt with me as over the time with the NHS, where i am, i have been fobbed off so many times by people who just do not understand the seriousness of our condition.
During my time i had returned as i bled, only to be fobbed off as if it was not serious, i have been sent from pillar to post while they tried to fob me off blaming each dept, i have also been visiting the clinics on a weekly basis for check ups only to be met by people who really do not know what they are talking about.
My surgeon took 6 weeks to come to one of the appointments after surgery to see how i was getting on, he did not even look at the place he had operated, even though i expressed my anxiety as to what was now happening, i am left scared and unsure of my future, if i even have one at all. His last words were i can do no more for you, not what you want to here.
I left with potentially exposed ONYX but no one and i mean no one will help me at all, they just keep passing me off as if i only have a burst lip.
Can someone please direct me to someone in the UK that can help me and is specialised in this field. As i fell like my face is a timebomb.
I have only a few weeks ago contacted DR James Suen, and amazingly he got back to me, but i feel the states may be a little to expensive for me at the moment.
Oh yeah one other thing, i have just found out today that the DVLA, WILL NOT allow you to drive if you have an AVM, has anyone else found this out yet.
Thanks in advance to all for their comments.