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AVM Survivors Network

Living with AVM

I just joined. I live in Canada. I was born with an AVM in my right quadricep muscle. It can be extremely painful. I have had a few injections with an interventional radiologist. It is so painful at first but it does lessen the pain for awhile after. My doctor doesn’t like to do it very often as he says it causes muscle atrophy and I do see that my right leg is significantly less muscled than my left.
I have severe anxiety and I have a hard time living with this with no chance of a cure. I worry what it will be like once I’m senior aged.
My mid thigh is quite swollen and I can’t stand any pressure applied to it. It feels like a knife is in there.
It’s been more painful than usual lately and now my whole leg is aching, which is new.
Anyone out there with an AVM in the same place as me?

Hi,

My 17 year old daughter has an AVM in her left thigh. It’s been removed 3 times but is again growing back. They don’t do well being removed, they always come back it turns out.

She experiences significant pain too, hers is situated behind the bone so sitting can become very painful.

I hope your pain reduces somehow, they are just such a horrible thing.

If you haven’t already found it, there is a Facebook group for people with extremity AVMs. Great connections on there too.

Regards

Gretta Jensen

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On 17 Nov 2018, at 6:04 am, KikiShimmerz ■■■■ wrote:

KikiShimmerz
KikiShimmerz
Extremity Member

    November 16

I just joined. I live in Canada. I was born with an AVM in my right quadricep muscle. It can be extremely painful. I have had a few injections with an interventional radiologist. It is so painful at first but it does lessen the pain for awhile after. My doctor doesn’t like to do it very often as he says it causes muscle atrophy and I do see that my right leg is significantly less muscled than my left.

I have severe anxiety and I have a hard time living with this with no chance of a cure. I worry what it will be like once I’m senior aged.

My mid thigh is quite swollen and I can’t stand any pressure applied to it. It feels like a knife is in there.

It’s been more painful than usual lately and now my whole leg is aching, which is new.

Anyone out there with an AVM in the same place as me?


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Im so sorry to hear about your daughter it does seem as though they juts continue to come back and not actually leave. My surgeon told me that mine would most likely never go away. Thanks for the tip on facebook I will defintily check that out. I hope your daughter finds relief and has people supporting her (seems as though youre a great supporter)!