I’ve been digging into the AVM stuff a little more. Heck when my AVM made itself noticeable I had little time to look things up. I did not know the size. Which now I know. It is: 9.5cm x 4.3cm x 10.7cm I’m still going through my medical records.
Anyway, I also found this which may help you.
https://www.bsir.org/patients/vascular-malformations/
Since this site is British, it might give you and your doctors a resource.
Good luck.
Sorry, a bit late to the party.
Although I was diagnosed in July 2019, I am still waiting to be treated. I have been officially on the waiting list for an embolisation since March 2021. So when it comes to recommendation or experience, I am afraid I can’t really help as I am at the beginning of my journey too.
I am currently being treated for yet another bleeding UTI although abdominal pains, PMS (AVM mainly around womb), mobility issues (lack of blood flow down my legs) and extreme fatigue (enlarged heart) are my main symptoms. The only burning pain I ever had in my urethra and bladder is when I had to have a urine catheter ( 
). Not a pleasant experience. That it is how they found the AVM: I had to be hospitalised for water retention due to a heavily bleeding UTI and they found a varicose looking vein inside my bladder when they did a cystoscopy. I don’t have any pictures of mine and I don’t know the size of it.
Findings were : MR confirms the presence of a very extensive arterial venous malformation. This is involving the cervix and the parametrium particular on the left side. The left internal iliac artery is grossly dilated and there are extensive, very large veins in the pelvis but particularly on the left side. The left common iliac vein is large as is the IVC. There is very brisk filling of the venous system consistent with this being a high flow arterialized AVM. The vessels also involve the vaginal vault and the urethra appears rather thickened, and I suspect there are some abnormal vessels in the periurethral tissue which may account for the patient haematuria and retention.
The IR specialist in Birmingham, following the angiogram, which I suspect you will need (that is essential for them to understand the structure of it and therefore potential treatment), confirmed “a type 3b avm mainly involving the cervix and uterus but with significant venous collaterals around the bladder(…) a marked shunt with a massive vena cava and dilated right atrium and echocardiogram which has shown right atrial dilation and increased pressures… The rationale for treating this lesion in her pelvis as she has a Schobinger type 4 avm”.
I hope all of this helps. Let me know how you get on.
Nathalie
Hang in there. I hope your turn comes soon.
Thank you for this, Nathalie! I would think the avm’s impact on your heart would warrant a speedier intervention and hope you get help.
On the bladder symptoms: although I have pain, burning and bladder heaviness somewhat tempered by pain meds, I never had blood in my urine. While the kidney stone was in my system, i had a bit of microscopic blood, but I;ve been checking my urine regularly since and not even microscopic blood. That’s strange because my London IR noted in his letter that I have urethral hemorrhoids (in addition to rectal h, which bleed daily) and another transvaginal ultrasound I had yesterday also noted my urethra is wrapped up in enlarged veins. For years, I thought my bladder symptoms were an embedded urine infection and treated with natural and regular antibiotics under a famous professor in London. The treatment managed to mess up my gut really bad, but my urine tests were negative all the time. My bladder pain and burning is severely sensitive to foods and drinks and I have no clue how this can be caused by AVM and pelvic congestion.
I’m talking to my London IR over the phone next week and will ask him why he ignored the AVM in my MRI report and chose to just treat me for pelvic congestion instead. I thought he missed the reference in the report, but now I wonder if he just disagreed with the finding. Yesterday’s transvaginal ultrasound however, noted that the blood in my veins moves very fast and that’s consistent with AVM.
Hi Mels, just wondering if you had a chance to show my image to your docs and if they agreed it’s an AVM. Thanks!
Hi
Sorry for the delay, I’ve been full of cold and out of action since my visit on Tuesday.
I did speak to him and naturally he was reluctant to discuss your case with me he said he would always recommend a second opinion, and also we did discuss the following that it’s being shown that Rapamycin + Ponatinib can cause regression in already developed avm’s so there is some hope that in the future people will be able to take these drugs and reduce the size of their malformations without sclerotherapy
The nice thing about these drugs is that a small amount can have a profound impact on the signaling pathway while leaving healthy cells mostly untouched.
He also said Thalidomide drug can be used or has been known to treat this. The only problem is it’s not supported for funding by the NHS and you would have to request your consultants to put the case through to the NHS funding board. My surgeon said they recently requested the drugs for one of their cases and it was rejected, maybe if we put a strong petition together we could put AVMs on the map and demand it be taken as seriously as cancer patients! I said to the dr on Tuesday, why are we not treated like cancer patients with specialist nurses and support he said cancer can kill and patients have a short life expectancy and I said and you leave us with our AVMs untreated and it’s a slow painful death! He repeatedly said AVMs are still not largely known about and explained they don’t understand why they hurt us as veins don’t have nerve endings, I said is it possible that AVMs do actually have nerves? He said if he can get mine out he will send it to the lab for more research, and he is considering joining the survivor group to gain more information from us.
I hope this has been of some help
Many thanks
Melissa
Dr Garnham spoke about Thalidomide too! He said there was a trial in London but it was for facial AVMs (?) 
I can quite remember but I seem to recollect it was AVMs on the surface of the skin rather than wrapped around organs.He said that this usage for AVM was not licensed.
He mentioned it again after we agreed that I would have an embolisation at the QE, he was thinking about using it to stop regrowth after embolisation.
By the way for the pain part, apologies if I am missing something obvious here but aren’t migraines also due to increase blood flow? Plus even if veins do not have nerve endings they might be pulsating against organs/nerves
PS Mel, I hope you are feeling better now. This winter, it seems to be one thing after another 
@clw My dr says he doesn’t like using coils so will try to block the artery with foam. I don’t know what to believe, tbh, I’ve heard these need to be treated aggressively. How large was your AVM? Mine is 7x5x5cm so quite large esp since i’m 5 foot tall.
Hi Pitica,
You know, I don’t know the size in cm of my AVM, just that it’s about the size of a cantaloupe. My AVM came on fast, my second visit to the IR Dr he commented in his notes, (I just read them again.) that I was in early stage high output cardiac failure. I guess that is why he said I could not wait 6 months and he preferred to have my first surgery within the month. (Actually at this point I had been in this cardiac state for about a month while they where trying to figure out what was wrong. If took another 3 months before the cardiac Dr got my heart under control so the anesthesiologist didn’t freak out.)
Now I say this because I was not given really any time to look things up or learn about what I have. I just had to trust that the dr knew what he was doing. But with that said, I would say, trust your doctor. If they do not like using coils, I would hate to have them using them primarily. You want you doctor to be comfortable.
So my doctor ended up using the coils as the primary filler. He used Onyx to seal up/reenforce a couple of the larger paths (would they be considered veins or arteries?) And alcohol to shrink some of the smaller vessels. So they will kind of use everything.
Now what I worry about. My AVM is in my pelvic. It’s large. It is now full of metal that is keeping the blood from flowing from one side to the other. But that is also where my seatbelt goes across. What happens if I get into a car accident? Before the AVM was discovered, i was in 2 accidents and no issues, AVM just squished. Now how will the metal affect that? Don’t know?
So maybe foam would be better. But I will say, your doctor will probably use several different things depending on the circumstances. And it may change over time. I had 4 surgeries. The last one, my doctor was primarily going to use alcohol and the coils where on standby. They will learn more about how your body is reacting to the surgeries and adjust accordingly.
Sounds like things are starting to move forward. Good. Hang in there. Oh, I’m 6’ 5"