Hi everyone.... Hope all is well. We experienced a little set back with Rocco. He developed a terrible virus with a high fever and literally overnight his avm on his lower lip grew. This happened before and his dr.'s think his avm also has a lymphatic component to it. Anyone else have issues like this? Anyway I spoke again to Arkansas today and after view of latest MRI they feel that an embolization with doxy may be a better option than bleomycin. They said that after the embolization he will do an excision the following day to remove this awful thing. This is the best news that we have heard yet. We are just getting insurance info finalized and are looking at early May. Praying I am doing the right thing. I have messed up with not getting a second opinion in the beginning. Just wanted to keep everyone updated and to thank all those who have been so supportive! Hugs to all
I'm hoping the AVM stays quiet until May, Amy. It must be very alarming to see changes. Wishing the very best for you and Rocco!
I've noticed when I am sick or when I go out in cold weather can make the AVM pain worse. We make the BEST decisions we can about treatment but with something like AVMs there isn't necessarily one "Gold Standard" because each AVM is unique. UAMS is very experienced with AVMs Your son will be in good hands.
thanks so much for all your help! You have helped in more ways then you will ever know.... Hugs!
thanks for the response takemeasiam... I have been so blown away by the way Ark Children's has responded to this case. I am truly blessed I found this site. My son is only 3 and was born with his avm. I don't know if he doesn't realize it feels different but just pray he is not in pain. He did mention the other day that it tickles him. That is new.....thanks again and good luck with your avm
Sorry to hear about his growing. We'll pray that everything goes well for him in Arkansas. We just came back from there for my husband's treatment and we go back in May too.
Thanks for keeping us updated Amy and Best wishes!
Thanks Kimi... How did everything go? We are hoping to get scheduled in the beginning of MAY. We have an embolization and then excision scheduled. Dr. Richter is confident that he can remove this beast....... My poor baby is sick again with a 102.6 fever. Grew again this week.. May can't come soon enough! Thanks for all teh kind words.. Hugs
They treated as much as they could but there was some complications. They found AVM growing into his left eye and embolized it because they didnt want it to keep spreading. He had retinal artery occlusion and permanent blindness in that eye. They said the AVM would have probably blinded him eventually. He has to go back in two months, sooner that originally planned but they want to get ahead of the regrowth. He's having a bit of a rough time since we got home but our family doc says he's just been through the ringer and needs time.
I'm so sorry to hear that he is ill, I hope that he feels better soon! It is difficult watching the AVM grow from week to week isn't it? I know it always makes me so anxious! Hopefully May will get here quickly for you
Amy, I just saw your post about the lip AVM and it brought so many memories flooding back. On my page I describe how after a major resection performed on my facial AVM back in 1971 in three years I had another large one develop in the soft tissue on my lower lip. The doctors had me spend the summer in the hospital where they gave me a series of injections into my lip to block all the different vessels feeding the AVM. Toward the end of the summer, when they felt the injections had worked enough to block all the feeders, they went in and excised the entire AVM. To this day I cannot feel anything on my lower lip but that is small prize to pay for having that one gone! Anyway, I will look to see in my old records what substance they injected, all I know is whatever it was worked. r/ Steve