My AVM is on my foot. It’s been scletherapised twice many many years ago and surgery before.
It got manageable - ish. It’s always ish. My shoes have stopped fitting again.
My stockings no longer are viable since they are ripped . The team will be a very long way away. It’s really stopping me from doing things.
I don’t know what to do anymore. Waiting lists in the UK are astonishing.
How do I manage? How do I live with this fear and pain?
Sorry to hear your struggles, it must be very frustrating. We experience similar here in Canada with the waiting, it is the down side to public health care for sure. Is there any patient advocacy groups that may be able to help a the local level to speed things up. In my experience here if the condition is significantly impacting quality of life, and stating in the plain blunt terms, our GPs can sometimes reach out to those they are connected to within the system. Is it worth another GP visit to a different care provider and see if they can up the urgency of specialist referral? Stay with it, and stay on the care providers. Thinking of you, John.
Thank you for commenting. And it’s sh.t that it happens in your country too. I’ll ask my GP when I go them.
They don’t take me seriously because of all of my ailments.
It all feels hopeless but knowing that there are those options gives me a little boost
Yes, I agree. GPs (if you have one who is suitably motivated) can be great allies. If the main thing you need to cope is a support stocking, definitely go and ask. It may even be that you can buy replacement medical support stockings online.
It does seem to me that sclerotherapy for an extremity doesn’t last forever and you are one of many people in the Extremity group who are fighting your AVM in this way: it does sound consistently a very painful condition. Do let us know what recommendations you get once you’ve gone through the doctor and referrals again because there are others who will benefit from that shared knowledge.
Very best wishes,
Richard