Getting bad again

so after weeks and weeks of recovery surgery, more surgery the embolisation chemical Onyx had started to come out of my face, again has anyone any experience of this, as last time i started hemorrhaging badly.

Am afraid this is happening again like last time, oh and NHS aint helping at the moment, only will if it starts getting real bad, and through past experience i had to be in the hospital and in the ward actually bleeding profusely before they would even bother thinking about surgery to stop it, please help am terrified i have to go through the same as last time or worse pay the ultimate price.

I have been trying for weeks now to get someone at the NHS to listen to me and actually do something preventative but nope it just aint happening, have been to everyone and i mean everyone but no one take this seriously.

am sitting at home this evening, after seeing my doc today and been to hospital to see a consultant as i am still off work from 10th June, when all this started.

Am terrified i aint gona make it, its that bad, am scared for my kids and my wife they are my world.

Last time i bled it got real bad, was rushed in for hemostatis, now am back in the same scenario as it has worked its way out of my face and i know what happens next, the wound contracts and then allows blood to flow through, more and more Onyx starts to come out and am then in a real mess.

Why oh why do they use this stuff if it burns through the skin in superficial areas, i just dont get it, everything else is fine, if only they could stop this onyx persistently trying to burn through my skin, this is scary now.


We have been where you are. Our son had a mandibular AVM and had 16 onyx embolisations prior to the nuclear option as i like to call it where he had his entire jaw resected and replaced with his fibula bone from his leg. he also had skin grafts to his chin, leg and inside of his mouth. Had to have a third of his lower lip removed - apparently that’s the max amount of your lip you can afford to lose without having major probs but even so he still needs to have some work done to try and make more room for the dental implants he needs (he had all but one of his lower teeth removed during surgeries).

I am pleased to say that he is now avm free. The embolisations were necessary to turn what was a high flow avm into a more managable low flow avm. This was done by Dr Jo Bhattacharya at the Southern General in Glasgow. In addition we were also under Mr David Koppel and laterly for the big operation Mr Colin MacIver. As far as we are concerned these guys know their stuff and are the best in the business. Ask to be referred to one of them. Jo does the embolisations and the other two are max fax. Happy to chat further. Good luck.

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Hi dave, sorry to hear you’re having such a bad time, you have been through such a lot already. I got very frustrated by the nhs myself but it sounds so much worse in your case. have you considered making a complaint through PALS? (patient liaison). Every hospital will have an office, why don’t you at least talk to them? I saw your previous posting and tried to reply but my computer kep playing up so in response to a question you posted then about the dvla, i think you should be ok. I have a large avm in my brain so ive had radiation treatment and i can still drive so i think you will be fine,they mostly stop people from driving if they are a high risk of an epileptic seizure caused by a brain avm i think
take care

thank you all for your replies, they are most reassuring.

Wakeboarder , did your son ever have the ebolisation agent extrude from his skin, as have heard in superficial areas this can be the case like me.

Sounds like he has already been through the mill, fingers crossed am thinking of you guys.

Situation today is Onyx is still coming out, some did come away through the night, but as said is still coming out.

My understanding is that embolisation chemicals, pick your poison are there to stop flow, but if the agent is coming out then how on earth can it do its job, hence my worry, a worry i have expressed to the NHS here in Scotland time and time again, as well as all the other complications i have had since they started.

My wife and i have been everywhere in our city but with no luck am afraid, we did ask my doc for a referral to another city in Scotland or even further afield but they refused, they said it must come from the surgeon.

We no longer know what to do anymore, the hospital ( ward ) are truly shocking, and mostly all of the docs in the hospital have never dealt with an AVM and so read the surgeons script, the surgeon just passes the buck with contradictory statements, one minute saying one thing the other another, we are at a total loss and now get the feeling the hospital think i am being a pain.

What do we do, the onyx is still coming out which i feel is not the way this should be, last time i was rushed in for emergency surgery to stop the bleeding due to exactly this, now they are saying this is normal after 6-8 weeks healing from the last surgery, am scared something i never am, but this is scaring me, as they just dont know what to do.

They are to leave me and have said tissue will grow around onyx, but how can that be if it is a foreign body, also if it was pushing its way through my skin as before , leaving me in sheer agony then why would my body/lip allow tissue to grow around it, just does not make sense.

Am really getting to the point in my mind that i just aint gona make it, mostly due to the inexperience up here, and how they are just fobbing us off, this is really worrying, all they need to do is make sure this onyx does not come out, is that so difficult, everything else is fine.

Boy oh boy, am seriously stressed, have already started thinking the worst if this all starts again, have prepared letters for my family vids etc, they depend on me bigtime, am sure just like the rest of yours do, my wife is a star. But i know this aint good to say the least.

Am lost..............

crazy, i am at home after being told by a trainee consultant, via a script from surgeon, that they WILL do nothing to help, if i bleed which is more than likely as it did before, then call A&E, but again from past experience when it stops i am sent home, over and over again. Surely this cant be how i am expected to live.

The only way i was treated last time, was because i was actually in the hospital ward at the time bleeding badly.

This cant be right.....


over the last few days have been shouting from the highest rooftops, as the onyx was coming out.

Went back to my GP, letters being written to plastic and radiology for answers, as well as maybe a complaint from me as the doc says that works quicker.

more about how i have been treated, and their lack of knowledge.

Been calling radiology for 3 days to speak to my Dr there who did the procedure, she really is one of thee nicest people i have met in a long while.

I explained the onyx had burst through again leaving me in great pain but worse in fear that as an atery had been blocked using it and was coming out that i was terrified of yet another big bleed, her answer was plausible. But give her due she called me, more than plastics would do.

Anyhow, one of the large pieces that has been trying for 2 weeks to burn through my skin finally did today and came away, a slight second of fear as i waited for the downpour of blood but no, nothing. I found this odd as last time it would not stop and had to have surgery.

So feel better now the damn stuff has came out hopefully there is no more to burn through. Wow that is sore and scary.