I’m scheduled with Dr. Rosen for an angiogram in a little over a week. I’m terrified. I was nervous before the first one, and that was before the 6 months of recovery from the necrotic wound, developing CRPS and before having my daughter. Besides the fact that I have to leave my daughter for an entire day, possibly longer if the procedure is scheduled late and I have to stay overnight, but I know another wound is possible, I know it could trigger the CRPS again, and that pain at its height it’s unbearable. I can’t explain to my one year old that she can’t touch my leg, why I’m on crutches. Dr. Rosen said he’s not going to glue if he sees that the area is feeding the skin. But then I’m worried that the pain I’m currently in will persist. Do I just tell him to do it and get it all, and I’ll deal with the consequences that will eventually happen anyway? If it continues to grow it will eventually need to be glued, and will cut off blood flow to the skin then. My pain has gotten so bad I have no appetite, I’ve lost 20 pounds in the past 2 months and everyone who doesn’t understand keeps saying “I’d love to lose weight so easily.” And i just get frustrated because this happened before the last treatment when my pain was severe and I became a skeleton, with no energy. And I have a daughter now, that is my everything.
I really feel for you, difficult situation and a tough decision that only you can make. I was a brain AVMer so I have little comprehension of the extremity AVM, but from being here realize how difficult they are to manage, the pain people experience and debilitating.
So with only that to go on, I can’t be of any assistance in lived experience, but I think the decision making process is similar for many of us. I have often said that we likely won’t know the “right” decision until after the fact, it ia all about being at peace with the decision made. Weighing the risks, potential benefits vs potential impacts and weighing the likelihood of potential outcomes. You have a lot to consider, and not just you but your daughter as well, thinking immediate and long term. I believe your working in health care will help you assess all the information available objectively and allow you to reach a decision you are at peace with.
One factor for me was having complete faith in my care team, had this not existed I would have most certainly sought further opinion. They were honest and presented the information factually. I am wishing you the best, and know we are all here to support you, John.
I can relate. Having a procedure with Dr Yakes today. My AVM is in my right hand. I have a 22 month old and know how it feels to not be able to be the mom you want to be because of the AVM. You are not alone. I’ve heard great things about Dr Rosen. He chose not to treat me in 2019 because I was not having many issues and he did not want to risk me losing any function. I think if he understands what you’re going through, he’ll make a good decision about what to do for you. I’ll be thinking about you and sending healing thoughts your way.