Does anyone have an AVM in their right groin?

Just read your other post about feeling like a burden on your family. It may feel isolating when you can’t share your symptoms with loved ones I fully understand your feeling of being a burden communication is so important, you will find that your family just don’t know how to understand what your going through or your pain cause it’s not something many people experience. I’m not sure about the buzzing sensation you have, was this after treatment because it maybe a nerve thing when I used to get sclero on my right groin Avm my surgeon always said you may have tissue damage which can cause pain. I like the saying the ‘squeaky cog gets the oil’ keep calling your drs and push for you to be seen by pain management team. I had to try a few different tablets to find the right one.
Please know you are not alone, we are here to support you and share experiences, and try communicate how you are feeling to your loved ones you are all on this journey together.
Always here when you need me
Mel

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I’m not sure how likely a link from extremity AVM to HHT is. It seems to me more common with pulmonary, heart and maybe brain than extremity AVMs. And it may not be the only condition but it’s the only one I recall the name of.

Other conversations about genetic links, which could be helpful…

Thank you @Mels ! :heart:

I will definitely chase the local GP tomorrow about my referral to the pain clinic! It is very true about the squeaky cog (just got to keep making noise at them :smiley: )

That is my worry that I might have nerve damage (they did an EEG I think to check, and while they cleared me on nerve damage in the main nerve, they said they can’t see it at a smaller level (like microscopic?) so who knows.

It means so much to have found everyone and be free to speak about these issues where I am understood.

Hi

My name is Nathalie and I have a pelvic AVM.

I can’t believe I have missed all those posts, I must have messed up my notifications !

I am in UK too, BIrmingham way. I have been referred to Queen Elizabeth for my treatment but it has been two year since diagnosis and one year since the embolisation was decided and nothing done.

I am lucky when it comes to pain (although I have spent all day in bed with it today) because mine is intermittent and cyclical. Naproxen, Codeine or Tramadol. But frankly, when it gets bad I don’t think Codeine and Tramadol do much.

They might not know much about it in Leicester but they seem much more proactive than my doctors here. I hope your procedure is successful.

Take care

Nathalie

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By the way, I was referred by my vascular surgeon to a geneticist at Birmingham’s Women hospital to check if I had a genetic condition linked to AVMs. I have two children and I was concerned about passing it on. They did some tests but they didn’t find anything significant although the geneticist say that there might be an answer there but very little is still known about genes.

I can’t take this anymore it’s really painful nothing helps and my surgeon seems dismissive of my pain and my GP just gave me a bottle full of morphine….I’m 35 I don’t want to be knocked out every day missing my kid growing up. If anyone has a cure for helping the intense burning feeling please please share with me. In the last week it’s gone from disrupting daily activities to halting any activity, pain went from on and off to constant stand up and it stings and burns throbs and feels like the veins explode inside of me! I want my life back :sleepy:

Hi Mels, I’m new to the group and also in the UK. Took me 5 years to get my pelvic AVM identified. My left internal iliac arteries are draining straight into my left illiac vein, creating a large AVM of 7.5cmx5x5.

Are you feeling any better? Is the pain from the procedure or from the AVM? I’m on a cocktail of meds for my pelvic pain (mainly bladder, urethral burning, urgency/frequency, and IBS, bloating, bleeding hemorrhoids).

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Hello
Sorry for the delay in replying and thank you for your message. I honestly don’t know if the burning is from the injections or the AVM. It’s started to calm down a bit now and I’ve managed to get an appt with the vascular team on Tuesday to discuss the next stages of treatment.
I’m going to ask if they can check if I have AVMs in other parts of the body because of stomach pains and hemoroids recently I didn’t consider this until I read the recent posts.

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So I have made it to the Glenfield finally prepped for surgery first thing tomorrow.
Professor Bown and his team will attempt, for the first time doing this procedure, to remove the VM from the right groin by removing part of the artery and rebuilding it with the left sephenous vein.

I have had my malformation since birth i remember it from as early as 5, tomorrow I could finally be free from it! I want it gone I have been crippled by it’s persistent growth and pain, but for some reason I feel a bit strange knowing it’s finally going to be out! 36 years on and tomorrow if will be gone just like that! It will be a long road to recovery but a challenge I am more than prepared for!

I will keep updating my posts with progress, and I will let you know if they can actually get it out!

Fingers crossed :crossed_fingers:

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Fingers crossed!! Glenfield is my nearest hospital so very best wishes for tomorrow (and I assume some days after) from me.

Thinking of you today.
All the best for the surgery :crossed_fingers:t2:

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@Writerchick Who did you see at the Royal Free? I am with their team, but weirdly my IR first completely missed my AVM on the MRI despite the fact that the report mentioned it! They scheduled me for a vein intervention that would not have accomplished anything. Another IR at a hospital outside London noted the AVM and told me I’d need an angiogram. I then called the Royal Free team again and they eventually acknowledged it’s an AVM, but they scheduled me with the consultant who missed it and I’m not sure I can really trust him.

@Bo62 Are you in the UK? I’m female, but I too have an unusual pelvic AVM because it’s likely congenital, not trauma related like most women’s (from births, etc). How did they try to embolise? Did they use onyx? I’m in between two teams here in the UK, who have different approaches and I am not sure who to go with.

Hello. No I’m in California, USA.
I also have congenital pelvic avm. And my issue is very rare for a male. I’ve had two embolizations in 2012. At that time my avm was 2.3 x 5 cm. It was stable for couple of years. Now it is 3 x 10 cm. I had other health problems including massive infection in leg after knee replacement. My symptoms have increased last two years. Extreme fatigue, abdominal pain, etc. I also have extensive intratesticular varicocele.
After 6 specialist refused to touch it. One can do another embolization. Not really sure about this doc. Enough about me. How are you coming along.

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I have Mr Lin (or Lim, not sure which) as my main consultant and Mr Brooks as the radiologist (they are both very good - at least for me).

I am sorry to hear about your troubles getting a diagnosis! I initially had a lot of troubles with diagnosis too, and the Royal National Orthopedic Hospital dr misdiagnosed me and sent me to my local hospital who twigged what it was and sent me to Mr Brooks.

What is an IR? I don’t know if I have had one of them?

Keeping fingers crossed for you!

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