Does anyone have an AVM in their right groin?

I have an Avm in the right groin in the confluence of the femoral artery and sephenous vein
They don’t know what to do with it and I’m in so much pain I need to talk to someone it’s very isolating and impossible to explain the pain so family and friends can understand

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@Mels

Welcome to Avmsurvivors! We do have a number of people with an AVM at the top of their leg or glute or in their pelvis.

I’m going to just invite the @PelvicAndUterine and @Extremity folk to see if they see this message in their inbox and a few can share how they are getting on.

Very best wishes,

Richard

Hello, I’m Ed and 59. I have a large pelvic avm which had spread to groin and causing heart failure. I was diagnosed 10 years ago and symptomatic ever since.
The pain in abdomen and groin in very bad and very real. Male pelvic avm are the rarest and difficult to treat. Most people don’t understand what this is and it is hard to explain. Mine is late stage and 6 doctors won’t even touch it because to dangerous. Had two embolizations in 2012. They have failed and avm has just grown. Don’t want to be a Debbie downer, every case is different. My symptoms are pain, nausea, dizziness, among others.
Hope the best for you and don’t give up. I know it feels hopeless but keep trying.
Eddie

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Thank you for your message I am sorry to hear about your diagnosis they have told me I can’t have any more embolisation either it’s a strange pain to experience just constant pulsing, is your the same?
Is your AVM connected to your arteries?

Thank you for your help and support

I have several feeding arteries going into it.
I’m taking several pain meds just to cope with pain. Yours sounds similar and hope the best for you.

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It’s good to be able to speak to you. What pain meds are you on I’m taking neproxin progablin codine it’s too much for a mum of a six year old i can’t play with her at the park or ride bikes can’t do my job anymore as a dental nurse that was my whole career
Where do you live?

I live in Central Valley in California. Take upto 50 mg of norco daily just to get by. I haven’t worked since 2017 and on disability. I also have severe arthritis. Also take gabapentin, ibuprofen. I’m at stage where my wife has to do a lot more for me. I get a lot of bloating and very little appetite.
My daughter is grown(26) and is married. I feel for you as you have small children.

They know very little here in UK regarding my AVM I’ve had pain and symptoms since birth with it but it’s growing like wild fire now. I’ve been on here trying to do as much research as possible to find a specialist and get a second opinion to the operation the vascular surgeons want to perform on me they are talking about taking away the Avm and femoral artery and rebuilding it with other veins but very casually say we’ve never done that before …. Errm I’m not a science project…?! So I have reached out to Dr Yakes from what I have read on here he is good, have you heard of him or seen him? A few months ago I collapsed at work and had a mini stroke I know it’s all connected to AVM cause it gets to a stage putting up with this hideous malformation that you can start understanding what your body is telling you but drs say it was not connected! Unfortunately I have lost faith over here in our practitioners so I’m going over the pond to get more options. Thank you for speaking with me, I hope I can be a sounding board for you too.

I know it’s frustrating and most people don’t understand what this disease is. I hope you can find some relief and keep looking. I’m on my 7th doctor and they don’t know how to treat it. This is a cruel disease with really no cure. But keep looking for some kind of treatment. There are very few doctors who know anything about this this. Don’t give up.

Before 10 years ago I don’t know what an avm was. Trying to educate myself as much as I can. Trying to explain to others is difficult.
I don’t feel like I have a rare dangerous disease, but I guess I do. Thanks also for listening.

How are you doing? I’ve just come home from final embolisation under GA very groggy and painful bed bound again for awhile the drs said I could go in a cancer drug trial and see if we can kill the Avm that way I will get more info and share it with you
Morphine tramadol paracetamol naproxen has proper knocked me out do you get spaced on your drugs

Hello
Hope you are doing better. You are going though a lot and keep up your spirits. Here for you when you need to vent.

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@Mels hope things are going better for you!

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I’m doing good thank you
I’m interested to know about your right foot Avm my daughter is 6 she has same on top of her right foot but they are not doing anything with it atm! when did you find out about yours?

How are you doing?

Glad to hear it! :grinning:

It was a hell of a job to get a diagnosis - the MSK team first spotted the lump in Oct last year with an MRI after I was very luckily referred to them by an on-the-ball GP. They sent me to a hospital up in London that misdiagnosed me and referred me back locally. Luckily my local hospital was on the ball, and they did the Doppler scan (I think - the one that hears the blood flow) and sent me to the Royal Free in London, who have been fab! That was Feb/April time this year - and I had my first round of treatment in May. I think they rushed me through at the hospital though because it has been causing me so much pain.

If you are based in the UK, I would say push to try and get the Royal Free team - they have been amazing.

Did they say why they won’t help her at the moment?

That’s good for you, did they do schlerotherapy? I’ve been having that in Leicester but cause it’s not working I can’t have any more.
She has been under referral at the Birmingham’s children hospital but say it’s not problematic for her at the moment so they will leave it but I said listen so was mine when I was kid until I got into my 20’s and then was told it’s too late to get rid of it so I’d rather her not wait to be in pain but actually deal with it now. Her looks like a cluster of veins on the top of her foot and her foot is slightly bigger than the other. I will ask her GP to refer her to London. We are undergoing genetic testing also because they believe AVMs arent hereditary but her an I both have AVMs on right extremely

There are genetic conditions that bring AVMs with them, so while an AVM itself isn’t a genetic condition, you can have AVMs as a result of something else. The only condition I know a name for is HHT (Hereditary Haemorrhagic Telangiectasia) and would normally bring a number of symptoms, not just AVMs.

Oh wow that’s really interesting, I’m surprised the vascular team havnt explained that to us they themselves are interested to know why we both have AVMs and on right side