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AVM Survivors Network

Extremity AVM specialists in UK please


#1

Not sure about anyone else in the UK but I’ve never seen an AVM specialist and I’ve been waiting a long while to see ANYBODY related to vascular surgery.

Whilst I’ve always had my condition in my left hand and always had to be careful with it, it’s never really intruded in my life.
However it’s been getting progressively worse over the last 2 years. I can no longer lift weighty things, put weight on my wrist or basically make any quick movements without being in pain.

I wasn’t sure it was linked to my AVM at first but following an ultrasound it transpires I’ve got a large vein/artery running through my wrist joint.

Now I’m done waiting to see someone who I’m not even convinced can give me the advice I’m looking for. I want to speak to someone who’s seen a similar condition to mine so I can make the most informed decision.

Any recommendations please?


#2

Hi my AVM was in my spine n I was treated at Wessex Neuro Unit in Southampton. All I can suggest is if yr Dr can give u a referral to yr nearest Neurological Hospital. hope this helps.


#3

Hi Bamberoo, my daughter has AVM’s in her leg and is seen the Royal Free Hospital, Hampstead, London where they have a large vascular department which includes AVM’s, under Professor George Hamilton. They are very knowledgeable and understanding. Good luck xx


#4

I am going for surgery on Thursday at southampton!

I have MR Bulters- who did you have and what was your experience like?

Thanks
Natalie