Gigantic Pelvic AVM - to treat or not to treat

Types of Avm's Pelvic & Uterine AVM
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I’m a 41-year-old male diagnosed with a large pelvic AVM (14 × 9 cm) and partaly spinal, with several aneurysmal dilatations up to about 5–6 cm. I was likely born with it…

Around the age of 25, I developed chronic lower back pain. At the time, doctors attributed it to disc herniation, nerve compression, hemorrhoids. Over the years, the pain sometimes became extremely severe, at its worst period, around age 30, the pain episodes were so intense that I occasionally couldn’t sleep for up to few days.That period was both mentally and phisically very difficult and dark. Then in coming years, the severe pain episodes gradually disappeared. Today, I still experience occasional lumbar pain and a feeling of constant 24/7 pressure in the abdominal wall and pelvis, but the symptoms are much milder and manageable.

After years of searching I was finally diagnosed with pelvic AVM at age 37. I’m still not sure whether I’m glad I discovered it or not, because the diagnosis brought a enormus amount of anxiety and stress, that is whole another topic. I went through all the cycles of existential crisis. I even turned completely gray over the following years which may or may not be related, but I choose to blame damn AVM :slight_smile:

Despite everything, my body seems to have adapted remarkably well. I live a normal life, have a wonderful family, super caring and supportive wife and two children, nice job. Very few people around me even know about my condition. I go to the gym, and recently started running and I love it even though apparently it’s highly risky, but I’m in so much better place when I’m regulary excercising. I’m joyfull positive person, I’ve learned to live with this shit (excuse my French) and would honestly accept living with this level of symptoms for the rest of my hopefully long life.

I worry that invasive treatment could actually worsen my quality of life, because the AVM is extremely large and complex, it can jeopardize some other organs and god knows what else. Even specialists don’t fully agree on the best approach. Some recommend embolisation, while others believe that since I was born with it and my body has adapted, conservative management might be safer.

I would really appreciate hearing from anyone who has experience with large AVMs. How did your condition evolve over time? How did you approach decisions about intervention vs monitoring? How do you personally cope with the uncertainty that it can explode any second?

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Firstly welcome! I was a brain AVMer so incredibly different for sure. We have a lot of varied experience here and really diverse. I anticipate some of our Pelvic and Uterine folks will pass along their experience. I can pass along my view of treatment, from my perspective of course. It is really hard to know the right answer. I always say that to have confidence in your care team, and that may mean consults with multiple, and be at peace with the decision. We often won’t the right or wrong answer until sometime after the fact. There are often multiple considerations for treatment options, and one is certainly monitor.

The coping part is something we all share. My AVM was found at 48 due to a rupture, followed by a hospital stay. I was presented with two options Gamma Knife or Craniotomy, monitoring was not recommended. I ultimately went with Gamma Knife, but then the stress of taking potentially years to resolve. This was easier as time past, and the fact I was at complete peace with my decision, and completely confident with my team. We are here for you! Take Care, John

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Hi Aleksa

My name is Chris I live on Vancouver Island British Columbia Canada :canada:
I too have a very large Pelvic AVM on my right side along with a 3 cm partially calcified aneurysm in the lower right side.My AVM is so large it displaces my rectum towards the left side.I was sent up emergency because the doctor believed I had diverticulitis, my stomach was red and very painful. After a Cat scan I did have acute diverticulitis and that’s when they discovered my AVM

This was in January 2007
I went to Victoria General for an angiogram and the specialist declined to do anything once he got to it being to high risk
Got rescheduled to go to Vancouver General but after many prayers and talking it over with my wife decided to just live with it
Can’t do high risk activities like scuba diving and major cardio activities but I still swim walk kayak and other things and I haven’t blown up yet​:smiling_face_with_sunglasses:

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Thank you John, I appreciate that.

I would love to have full confidence in my care team, but I can see in their faces that they’re not entirely sure what the right approach is. I actually haven’t done any follow up imaging or analyses for the past two years, I needed a break to regain some positivity and strength before going through that process again.

Once I get the comparison results, I’ll know more, but I can definitely say that I feel much better today than I did a few years ago when I was first diagnosed.

Cheers.

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Thanks Chris for sharing your experience.
It sounds like you made the right choice. :slight_smile:

I personally found the whole medical evaluation process to be quite depressing each time, I tend to start overthinking everything, and anxiety kicks in immediately. As soon as I take a more stoic approach, accept the situation and focus on living my life, I feel much better right away…

Cheers

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Welcome,

I have a giant complex AVM with multiple feeders from my left and right iliac artery. It spans my abdomen and goes into my back. They have never attempted to measure it as far as I know, they just use beautiful words such as grossly distorted, size of the vena cava. It is a lot to take in when you’re first diagnosed (2019 for me)

I was dreading the explosion too when I was told especially that the urologist who announced the news said things such as “25% of your blood volume in your abdomen, doctors had a meeting to look at your images and in 25 years nobody’shas seen anything like it, if it goes nobody can save you, I would wrap myself in cotton wool and stay home “:roll_eyes: Fantastic bedside manner. I kept myself together and then went out and cried. However, after speaking to a vascular surgeon with more specialised knowledge he reassured me that it took a lot for it to rupture. He said that I was at moderate risk of bleeding and that it would probably manifests itself through rectal or vaginal bleeding rather than hidden internal haemorrhage.

I was told I needed to treat it because the size of the shunt was putting pressure on my heart which is enlarged and I was at risk of heart failure. I had to wait through beginning of 2020 to end of 2022 for treatment and by then, I could barely walk. Not enough blood going down my legs.

I was not always that symptomatic. Looking back only minor issues:

Period pain - they looked for endometriosis-

I was never ever able to run - legs would become concrete posts- multiple UTIs

and then, after pregnancy ,

fatigue, increased pain, haemorrhagic periods, mobility issues, multiple chest infection etc….until I had urine retention through bleeding and had to be hospitalised and finally diagnosed. I was 46.

The size of my AVM was worse by then, in part due to my miracle pregnancies, in part because of those years growing undisturbed and now, it can only be managed.

If I could, I would have treated it before but my AVM is not yours, the evolution of my symptoms only relevant to my journey. You need to make your own decision.

Whatever you do, choose someone used to dealing with AVMs. I travel to London for mine. I live over 2 hours away.

Best of luck

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