After a long year of waiting, I finally had my sclerotherapy appointment. During it, I found out that it isn’t my AVM that’s causing me pain, but instead some “masses” inside my AVM. After being told for 3 years now that surgery isn’t an option for my AVM as there is too much blood flow and sitting underneath muscle and nerves, I am now waiting to be booked for a surgery to remove the masses. I don’t believe they will be removing any of the AVM, but just opening it to remove said masses. I’m feeling frustrated because now it’s just another thing to stress about, and more waiting. Additionally, before my AVM was correctly diagnosed, I was told it was two different types of cancer. I know that’s not what’s happening again, but this situation is feeling oddly similar to only a few years ago. Curious if anyone else has heard of anything similar happening.
I think I can say that there’s a bunch of people in the community who have had a misdiagnosis at some step along the way, including at what feels like a very late stage. This is one of the common issues for rarer medical conditions: that other assumptions about what’s going on often occur. So I’m sure you’re not alone. The misdiagnoses usually occur in the years running up to finding the rarer diagnosis but I think also it is only when you get down to the business of surgery or scans in advance of surgery that the closer look that those activities bring clarified what’s going on.
It’s sounds rather as though you’ve caught both types of misdiagnosis, which is very unhelpful but I hope it doesn’t detract from getting these things resolved. It makes the process so emotionally difficult but hopefully doesn’t affect the success of the outcome overall.
Do let us know how you get on because I’m always happy to cheer from the sidelines! We all go through some of these emotions.
This sounds a little bit like FAVA to me. They thought I had and avm, too, and sclerotherapy never really helped (but medication: sirolimus, then alpelisib, and now a clinical trial for RLY-2608). I’d do a little research on FAVA and see if that might be what you have.
I looked into FAVA, I don’t think it’s necessarily what I have since sclerotherapy did shrink my AVM considerably. Although, I will bring it up with my surgeon to make sure it’s looked into. Just annoying once I think I’ve finally got this figured out & know my treatment moving forwards to now find out there’s another layer to it.
