So, after 9 months of being told that it was better to leave my pelvic AVM alone as it was too high risk for embolisation, my vascular surgeon called me in to day to say that they are now looking at embolisation due to the pressure the AVM is putting on my heart.
It took me a bit by surprise as I had a letter from the cardiologist two months ago, which said that nothing needed to be done regarding my enlarged heart for now and they were just going to monitor it yearly.
So what changed? When I had my angiogram the images were sent for review to Dr Ian McCafferty an IR specialised in AVM at Queen Elizabeth Hospital in Birmingham, which is where my cardiology team is also based. They now have agreed not to wait and my vascular surgeon, who is at an hospital local to me, pointed out that he wouldn’t do the procedure as Dr McCafferty was more experienced. It feels like he has been overruled.
As you can imagine, I am not sure what to think anymore. Anybody had embolisations on a pelvic AVM here? What were the risks? Side effects? Results? What different type of embolisations are there? During the angiogram, I was told mine is too high flow for coils.
I am lucky that my symptoms are fairly mild and I have had no rupture yet. Is it worth taking the risk? I am not going to ask if anybody knows of Dr McCafferty In UK, there’s little chance of that. All these questions I should have asked today but my mind was blown.
I have got 3 months to mull it over and get my questions in order: they are not going to do anything now due to the Covid situation so I will have another appointment in 3 months to discuss / schedule the procedure. I hope there’s somebody put here that can help me get my mind straight.
Hello @Nathalie I am so sorry that you are getting conflicting information. I dont have AVM in the pelvic mine is in my head. I am sure someone will answer soon - Here in the USA Dr Michael Lawton is the expert and is now at Barrow Hospital in Arizona - they do remote consults and you might want to contact them for peace of mind.
I was told by my neuro who is at Stanford that is a like a art form - so like experience plays a huge role for a dr to know what to use for an embolism. In my case they used medical glue and onyx . Mine is called a DAVF and had 30 attachements. The first round they did not get everything and I was in surgery for 7 hours total between the Angio and embolism which is super long and not normal. The second time they went in the body had some how sealed up some of the attachments on its on which is rare and the the two that are open are in a spot that would or could case paralysis ( and I was already paralyzed from my 1st stroke and recovered) so they are just watching it.
In my case I had to be awake for the Angio but they knock you out for the embolism. Then I spent the night each time. I am allergic to the dye so I have to take steroids before and then I am really sick afterwards. Most people are just sore and you have some hair loss from it. You will be sore from the cut in the groin area and have to take it easy for the first few days. I drink electrolytes to flush the stuff out of my system.
I have seen Dr Lawton work as he was at UCSF and was almost my dr but I was already at Stanford due to my stroke.
This is a great group and we are here for you. We know its scary.
Hugs Angela
I had a little look for Dr McCafferty and he has his own web site. He sounds like a specialist in the kind of area you’re interested in, so I can see why your other IR says he is more experienced:
For what it’s worth, my AVM was a dural AVF in my brain and was embolised using PHIL glue rather than the more frequently used onyx. However, I’d look to Dr McCafferty to make the recommendation as to what is most suitable for you, as I expect it will depend on how high flow and how large the vessels are (I can imagine that pelvic or uterine blood vessels can be much much larger than in the brain).
The whole idea of embolisation is that it should be less invasive than open surgery. My brain AVM was operated on, leaving about a 5mm scar – absolutely nothing on the scale of it. It really is “keyhole surgery” with the tiniest key. However, you will feel groggy due to the contrast material – when used in the head, it leaves you with a bit of a hangover feeling; I assume you might still get that if it flows round to your brain at some point – and the glue obviously has a solvent in it, which you end up breathing out. That means that your breath is a bit yucky for a day and where you have the glue smarts from the invasion. But that’s about it. I did get some bruising at the injection site but overall, it was (for me) a perfectly gettable-throughable op and I’m not brave.
I did look into Dr McCafferty and the Queen Elizabeth and, I must say, both have an excellent reputation. My sister in law works for my local hospital; she said that all their difficult cases are automatically transferred there and that recruitment from nurses to doctors is very selective. So I am reassured on that front.
Dr Michael Lawton looks like a great doctor, but he is a neurosurgeon, so more appropriate for you guys. Most of the people here seems to have brain AVMs and I do feel for you because some the symptoms and side effects are horrendous. So don’t say you’re not brave, you’re dealing with a lot more than a good many people do. Although, I think it is good to keep our thoughts balanced and remind ourselves, that it is still a lot less than others.
I am sensitive (I wouldn’t say allergic although I had my throat closing up once) to the contrast in the CT scan but I am fine with the one they used in the angiogram so I hope it will be similar. As a matter of curiosity, what do you call attachments? Is it the feeds from the artery / vein into the AVM? The number of abnormal blood vessels? I have tried to look for any lists of risks/ side effects but there’s really not much out there. Stroke and bleed are my fear.
From what I have seen, patients with pelvic AVM need to have several embolisations and my vascular surgeon did say that it would be the beginning of a sequence. He also said that the embolisation would not cure anything, blood vessels would regrow, but the idea is to temporarily alleviate the impact on my heart. He doesn’t want me to get my hopes up and entertain any idea that it could be removed/obliterated. I overheard him talking to DR McCafferty on the phone calling me a “life long project”. I am still ambivalent about that. Anyway, I could, in the future, be the go to expert on this site for pelvic AVM embolisations !
I think it’s a matter of waiting now and speak to the Dr himself. I have digested the news, done my research, as much as I can for somebody who is not a medical professional anyway, and I will get a list of questions and see what they say.
Thank you for helping me process this, it blows my mind at times.
