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AVM Survivors Network

Hi! My name is Nathalie

Hello everyone,

I am a French mother of 2 living in UK. I was diagnosed last July with a giant pelvic AVM. I have not been told how big, I noticed a lot of you give size in centimetres, just that some of my veins are as big as my aorta and I have a lot of “malformaties”. Words such as massive/giant/ never seen etc were also used and were quite alarming at first. On the bright side, I now have a reason as to why I am permanently looking seven months pregnant. That’s actually two positive right there: no need to waste time on diets and when people give up their seats on trains and buses, I don’t refuse :smile:

I have been very lucky that I have never had a bleed, abnormal bleeding yes but no rupture as such. Apparently it is actually a miracle that I gave birth to two children without haemorrhaging! I must have a guardian angel. Nevertheless, I am quite worried as what would happen if I did. My vascular surgeon was trying not to be too alarmist when discussing emergency surgical intervention and he said that I am at medium risk of bleeding for now. Indeed, there’s no treatment for me, not even embolisation for multiple reasons. At the moment, my vascular surgeon was contacting other experts across UK and looking for experimental treatments. So it is a lot of wait and see and hope for the best, which is easier said than done at times.

In terms of symptoms, my heart is enlarged due to the AVM but pumping well, so all good, but my legs can be very painful. Pains are worse during my cycles, I had a procedure 4 years ago to treat menorrhagia, so they are currently using Zoladex to put me in menopause (I am 46 soon 47).

More and more, I also struggle going upstairs / uphill and get spasms / cramps due to issues with my blood circulation ( a lot of my blood is redirected in my pelvis by the AVM so it does not make its way to the legs hence the enlarged heart which has to pump more). However, some days I am great and could be running all around the school ( I am a teacher), no problem.

I have found that making sure I sleep enough (sorry kids books won’t be marked this week) and put my legs up at the end of day (sorry hubby and kids but you’re in charge), helps a lot. Another positive there! :smile: ) When I am in pain, I also massage my legs with lavender oil and it is incredible how it helps.

Anyway I would love to hear from anybody in a similar position ( I am made to feel very “unique” and therefore very alone at the hospital). Your experience, treatment, symptoms, signs to watch out for, anything that helps, any nuggets of wisdom or just hello would be appreciated.

Take care

Nathalie

Hey Nathalie,
I’m Merl a member of the moderator team here on Ben’s Friends.
Some of the members have listed the sizes and depending on the location of the AVM, like the brain, where a small AVM can have a HUGE impact. Where, for some, larger AVM’s can have minimal impact until they become symptomatic.

A big plus here is that your vascular surgeon is investigating options. Some dr’s can simply say ‘Too risky’ and not look for other treatment options, but it sounds as if you’ve got a good dr. So keep a hold of him.

We are always here if you need to chat, so don’t be a stranger.

Merl from the Modsupport Team

Thank you for the reassurance. When you hear no treatment you wonder.

I am so grateful for this group, although I have little experience and therefore advice to give, reading everybody stories has been making me fell more normal in some ways. It has also made me realise how lucky I am to have so very few symptoms and two normal births/pregnancies.

I hope you are all keeping safe.

Nathalie

Nathalie!

Oh wow! My AVM is in my brain, so I can’t tell you anything about yours: as Merl says, what is “big” in the brain is nothing compared to what I think you and some of the other ladies describe re pelvic and uterine AVMs. I think you are a bit of a miracle and your children are definite miracles!! No doubt about that.

I hope some of the other ladies in the @PelvicAndUterine group may have some experience or encouragement to share with you. I am sure that pelvic and uterine AVMs tend to be large but I have to say it sounds like you are a bit of a record-breaker!

I completely agree with Merl. It is great that your doc is busying himself trying to find options for you. Keep hold of him. I do think that sometimes patients turn up with more “normal” problems and it motivates the doctor to have something that is more challenging. My first diagnosis of my dural arteriovenous fistula was done by my ear, nose and throat consultant. He was quite excited by discovering it as he plotted over my head with his stethoscope. I told him I had a symptom that could have been just tinnitus or could have indicated an AVM, so he used his stethoscope to try to find it, not really expecting to hear it but he did. He said nothing to me during my examination then broke off to call a colleague (I assume in neurosurgery). The colleague’s phone wasn’t answered, so then he turned to me and said “Well, Mr D. You’re my last patient of the day but you’re my most interesting patient of the day!”. I have to say, it is never a good thing to be the most interesting patient, as it suggests rarity, but hey, what can we do? I said to him, “I’m not sure I want to be your most interesting patient of the day!” and he confirmed the diagnosis of an AVM in the back of my head.

It’s great to have you join us. I hope we can offer you some fellowship and encouragement.

Very best wishes,

Richard