So things have sped up a bit for the treatment of the avm in my left foot and second largest toe. Talked to the interventional radiologist on Monday. My procedure is going to proceed on Friday morning. He said that they are doing an angiogram and then they will place the first embolization to stop the bleeding. He stated there is a 50% chance that it will be successful according to “the literature”. That there is a chance that if it does not work I could face amputation.
He also stated there are three types of embolization they can do.
I am scared of general anesthesia. I am having a lot of feelings of anxiety but I am hoping it works . At the very least I hope it stops the bleeding. I am tired of random bleeding and worrying about bleeding to death.
Hi Warren. I’m sorry to hear things have continued to be so difficult for you, that is a lot to have to cope with in such a short time. I’m glad it sounds like you’ll have a resolution by Friday - I’ll keep my fingers crossed for you that the doctors are successful and you have the best possible outcome. Take care and good luck.
Hi Warren I hope your surgery goes well. Don’t worry about being nervous they usually give you a good dose of funny medicine before rolling you into the operating room.
My AVM is also hard to treat and they never know what specifically they’ll work on when surgery starts, but it always turns out alright. They take their time and it’s a long operation.
Just an aside, since you have an AVM in your toe I wanted to share about a new treatment type they’re giving me which is Bleomycin injections near the AVM. No anesthesia necessary and hardly any pain as they combine it with exparel which lasts a long time. When the doctor was talking me into it he showed photos of the results on a finger and said it’s a common treatment for AVM in the digits where it’s hard to access via catheter. Might be something to look into after they fix the actively bleeding stuff.
Thinking of you. I hope all goes well.
My AVM is in the sole,ankle and calf of my right leg. No one will touch it as too big. So it is wonderful that you have an option.
Look forward to your next update.
Take care
Michelle
Where are you locate?? I am in NY and have my AVM on left foot ankle, sole size of a softball , I have had 19 embolization with a wonderful surgeon, had my latest one today!
My daughter has multiple AVMs in her right food. After bleeding and open tissue we finally got a diagnosis and started treatment (embos) in ATL, which was a good start.
Moving back to Germany brought us the challenge to find an other doctor who was capable to treat her.
But now, 7 years an several embos later she has a quite normal life with no pain!
Only some scars and the possibility the whole thing might come back. But now we know the drill.
So it‘s worth going through the treatment and the anesthesia. Don‘t worry!
Good luck
Martina
Good luck with the procedure- I am keeping fingers crossed it works.
I know my specialist said that it often takes several goes with embolisation to work, and they are testing new treatments all the time (like immunosuppressants). Hopefully one of these will do the trick for you!
Tactile
Thanks for the encouragement and sharing your experience. Thanks for mentioning the possibility of another treatment after the bleeding stops. I will talk about that with the Doctors.
Embolization is often done in multiple approaches, so don’t be too perturbed at the idea of multiple goes. Plus, I’m a complete wuss yet having had one brain embolisation I would happily have had a second if I’d needed it to fix 100%. Happily my doc said he got it in one shot.
Martina,
Thank you for sharing your daughters experience and I am glad that things are looking good for her after the procedures. Reading your post encouraged me.
On extremity AVMs, people do seem to have multiple approaches, so I think the better thing to have in mind is that it may well take multiple approaches but if you’re really in favour somewhere, you might get done in one go.
I think my point was that having had one go, the idea of a second go wasn’t half as frightening to me as the first: I’d done it, I’d got through it and knew what to expect. The unknown was a big part of my worry and so I hope even if you need multiple approaches, you’ll be less perturbed than you are today.
I understood your point. Perhaps I did not communicate that well.
I understand the possibility it might take more than one go and glad that you mentioned it.
Hi I’m in NZ. I hope your embolization went well. It must be very difficult for you having swelling that size on your sole. My AVM’s are deep,and connected. They were never diagnosed until 3 years ago. I was 11 when pain started. I guess Embolization would have been an option if they had known what it was. Drs seem to know very little about them here. It can be very frustrating.
Take care
