Can someone please help

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.

hi dave.
sorry to hear of your bad experiences and that you feel let down by the nhs. i also have a facial avm and have had onyx treatment however like you say i don’t think the uk or the nhs can truely offer the expertise of the surgeons in the states ( dr suen and dr yakes etc).
where are you receiving treatment?
i thought in regards to driving its only for those with a brain avm? mine is in my eye and i still drive? xxx

thank you so much for your reply, i think i may have just this moment read your story on another site.

I am in a very wealthy oil city in scotland lol , i dont really want to say which but am sure you may be able to figure it out.

My Oynx was put into my lip AVM and all feeders which include just below my lip ( chin ) and left cheek, the AVM from my lip has been removed including the Onyx, but the remainder is still in the feeders which they have left in.

My embolisation was carried out by a very well informed Dr, she also had a partner from Birmingham up to assist.

It is the surgery part that has been a pain, complications arose when the stitches burst to my horror. Trying to get anyone other than the surgeon to understand is very frustrating as they simply dont understand, and to be honest i am unsure if even the surgeon does, AVMs are not his field as far as i know.

I am currently still off work as i have been told to let this totally heal, but its getting very frustrating to say the least.

My face is twitching a lot of the time and i cant determine if this is just nerve regeneration or blood flow as it is in the same place as the Onyx is, all i know is it is very annoying lol.

My surgeon has said in the past quite negative things, i do understand nowadays they have to tell you but there is a way of doing so and his colleagues were not so negative, the latest is that i will come back and that really there is nothing else he can do. Great just what i wanted to hear ( this being one of his lesser horror stories ).

He has also said he only debulked, but my understanding is if the nidus is removed it wont return or chances are lower, so cant really understand as his colleagues have offered a different story.

I hope not as i really do not want to return to where i just was for treatment.

I was so grateful Dr Suen replied, i really was.

I hope you dont mind me asking, but was all your Oynx removed or was some left in ?

Found this, but as you say it may just be cranial.

i also wonder if the person whom did your onyx was maybe thee very same person whom helped my Dr carry out my onyx, mines took over 5 hrs under general.

I had a seriously bad bleed due to the onyx bursting from my lip, was in the hospital luckily when it got real bad, nurses had to help me stem the bleeding, i ended up grabbing hospital full size towels and pushed the emergency button by the bed. Ended up going through countless towels and even then it really was not stopping, ended up in emergency surgery for Hemostatis there and then, they didnt hang about, was losing a lot quick.

Was very scary, and did think i was a goner, luckily the surgery sorted that out for now, so i cant complain about that, but i do feel i have been given only a band aid as apposed to a fix.

Your story sounds very scary and you must have been petrified. i had my surgery in Birmingham so it very well may have been the same surgeon. as far as i am aware they are prob the best people in Birmingham that wwe have in the uk for avm knowledge as most surgeons haven’t dealt with them b4. i had a large chunk of the onyx removed however still have quite a bit left in. They removed the majority of the nidus but had to leave some vessels in on my eyelid that were 2 close to the skin. I’ve now got regrowth where it was b4 and new growth under my eye. currently awaiting an angiogram to see whats going on and then to decide and see if dr suen cam help me. did he feel he could help you?
i understand your frustration and really hope things improve for you.
thank you for the link…i will have a look. i hope its just cranial and i rely on my car for work!!!
i also get twitching and numbness but was told this is because my rubs against a nerve so maybe the same for you xx

funny enough the twitching can be quite amusing, it tickles lol, and agree with your thinking with nerve touching.

To be honest i dont think they can remove all the Onyx if it is stemming flow from blood vessels etc, like you i still have quite a lot in but was never told about the burning through the skin in certain areas where the skin is very thin,like the lips etc, i had a reply from Dr Suen and he did say that the use of Onyx in areas such as the tongue and lip or thin skinned area can cause issues.

I hope you dont mind me asking, but did you say you have regrowth from the same area that was operated on and is it the AVM again, this would be disappointing considering what you have went through and as you say if the nidus was removed, my understanding is it is less likely to if removed.

My surgeon said he had only debulked but in the process had removed most of the huge area i had swelling which included the nidus also, but he said it will return, he said this before and directly after surgery.

I have read and watched your story, if you are thee same person i think you are, i have to say i take my hat off to you and can seriously empathise with you, when i watched i had a moment to myself when you said how it made you feel when others said something ( of course this is if you are the person i think you are in the prog ) i too have had people say some terrible things, and for the last few years i have tried to hide mines, but i now work in a very public job ( taxi for the oil companies ) and so stand at airports and have to enter big offices also meet public daily and i know just how hard that glance you am sure you will know all to well. That split extra second when someone tries to hide when they look that little to long, also the questions, oh the questions " what happened ". Am sure you will know exactly what i mean.

Facial AVMs can be extremely difficult mentally, and am sure anyone with one will know all to well what i mean.

I had started to stay in a lot more, as much as i didnt want to and as strong mentally i usually am with it, but it does start to wear you down, luckily my surgery has left me visually looking pretty much normal and you really cant tell, even though every single one of my stitches had burst to my horror, in the end it has healed very well. Its just the inside that worries me and whats going on internally, time will tell.

I think your radiologist who did the onyx may have been who came up here to help with mines, i am going to ask my radiologist.

I will post up a pic, as embarrassing as it is, before and afters well the after aint quite ready but will do inbetweens.

I hope all goes well for you i really do, you seem a very strong person, and will be wishing you all the best as well as your family.

Keep in touch i really am interested in how you get on with yours, and that you are doing well. Are you thinking of trying to get over to the states, i have if it means it will save my life, but am unsure how to go about this, mines is high flow and is a worry, is yours ??





thanks for the pics…its nice to see the healing process and look forward to seeing the nicely healed ones :slight_smile:
so the regrowth from mine is a little on the eyelod itself just over from where the main nidus was and where some dodgy vessels were left but the bulk of it seems to be under the eyelid which is where it hits the nerve which is a bit of a pain. had an mri which i have to wait 8 weeks to get the results and awaiting this angio to see whats going on.
yeah i wws the one on e.bodies as needed to find a surgeon who would treat me after my local hospital refused to treat me after i had a massive bleed behind my eye during an embo so im lucky to not have any neurological issues and have my full sight.
its so hard the mental side of dealing with it. when mine was at its worst i had to force myself to go to work and deal with all the stares and questions and also work in a public field being a nurse. im glad your surgeon has done a good job to make you feel happy with it. Don’t let it get you down and don’t let it win. they are so complicated it’s frustrating. i wish i was rich and I’d go to the states in a flash but need to decide what to do after these tests im happy and if we could afford treatment over there so will see how we go!mine was high flow b4 so assuming it still is now. are you on facebook. there is a fantastic group on there and one of the ladies is receiving treatment from dr suen and is very happy with it. she is a lovely lady who can offer great advice on this. im on facebook as caro mcmeeking if you want to add me x

wow, your hospital refused, that aint good.

am afraid i dont use Facebook not a huge fan, i do hope all goes well for you, i know the daily struggle.

Sounds scary that you had that during an embo really does.

Hopefully your next angio can shed some light, how long has it been since you had your initial surgery ?

well, an eventful week for me.

At clinic for check up from surgeon, didnt even look in my mouth where he operated, mention to staff of infection, they said it wasnt.

Pity they were wrong, so went to my own doc for antibs, got real bad, sore burning, and my own diagnosis was the Onyx pushing through.

Took until today Monday to realise i was right, it is the Onyx again, luckily i had my own doc again and was given a letter to take to the very ward that i was in to see the surgeon as this should not be happening, well after hours waiting as per, told the same old same old.

This Onyx stuff is a nightmare, tries to burn through skin and create the very issue you are trying to get away from, bleeding, i hate the stuff.

Thing is i have been to the hospital countless times, the doc, the surgeon, the ward, the clinic, and no one will really help, its got to get real bad before they do, in my case i was losing a crazy amount of blood before they would, and now i face the same due to this damn onyx stuff i just dont know what to do.

I have been told some really quite stupid things from the pros lately, just shows the lack of experience.

Can anyone tell me if skin will grow over onyx, because in my mind it can not possibly, but pros seem to think it will.

As its leaking from my face AGAIN

more pics, firstly days after my surgery stitches burst bigtime, was left and then how it healed 2 weeks later amazingly, even i was shocked.

aint too clever now, as onyx is coming out of my lip AGAINN.

dave you poor thing.
sorry you are having such a crap time of it snd hope it heals up soon.
i had my last lot of surgery in 2012 and should be having an angio this year?
mine broke down too and technically i had a hole in my face but be patient as it will heal. onyx is pretty corrosive stuff x

Caro thank you so much for your reply it does help as you have been here.

My only problem is the onyx is burning through time after time, and is exposing an area i bleed from very very badly, was shocked the last time just how much, also the fact its coming out is also scary as i thought it was there to stop the bleeding, if it comes out then am in big trouble i would think, or am i wrong.

Goodness this is seriously stressing me out, as i dont want to go through that again, i have never been so scared for my life before.

I dont know if i should be worried about this stuff coming out all together.

My mind is getting seriously carried away with it, thinking i may bleed to death etc ect, am terrified, i only live 1 mile from the hospital.

But am so terrified. And have been off work 7-8 weeks now and my mind is going nuts.

I just cant understand if its so bad and can extrude from skin etc why they use it, makes no sense. Also as time goes by with this stuff constantly try to escape from wherever it was placed. Also can skin grow round or over it, the surgeon says yeah but i aint sure ??

Sorry so many questions, thanks in advance.

its ok dave. im happy to share stories.
if you are worried you should keep on at your doctors as the stress won’t do you any good. would it be worth seeking an appointment with another doctor or someone they could recommend if they are not doing anything. its a shame dr suen doesn’t do a trip to the uk to sort us all out once a year :slight_smile: x

lol i know that would be good.

Caro i know stress aint good and do really appreciate your advice it helps.

I have seen so many different docs up here, but none am afraid know what they are speaking about, not their fault i know but is difficult.

Yesterday i was at my own doc for yet another line, and showed her the latest development, which we had thought was an abscess or cyst was in fact onyx trying to burst through again.

Give her her due she sent me off to the Hospital armed with a letter for my surgeon, whom to be honest aint the best with comms, he aint even seen in my mouth yet since he has operated not good.

Was told now all of a sudden that they expect bleeding, and it will just take longer to heal now what with the onyx, not answers i have heard before, and considering i was rushed in for hemostatis on my lip last time due to this i am confused.

I have a logical mind and it really hacks me off at times, lol.

I may go back to my doc, but i have asked for a referral and she aint willing to as she says it must come from my surgoen if he fells he cant help, duno if this is Scottish law or what but is what is making this harder.

Did you say tissue grew back at the site you still had onyx extruding, or was it from the site they removed onyx.

I think your story is a testament to you, i have watched and read and really think you are so brave.