Ash got her stitches from the biopsy out on a Thursday…we got on the road immediately afterward to head to Jackson. The trip there was fine we checked into our hotel she called the infamous boyfriend and decided to head to dinner. I didnt get much sleep that night…we woke up the next morning and headed over to the hospital and filled out all the necessary paper work. Im still hoping at this point that weve been misdiagnosed. We are finally called back and Ash and her dad spend ten minutes arguing over what shes gonna weigh…we finally go inti the little room amd again do what we do best wait. After an hour the nurse finally come in and says that the dr is on a conference call and its gonna last at least take an hour so we can go eat lunch and come back. After we have anxiously awaited this appointment for weeks do they really think i wanna leave and eat. But we did anyway…highlight of the trip Ash got to eat her first piece of chocolate cake since they removed her braces due to al this. She enjoyed every bite. I never really told Ash all the details of what I had read while doing all thev research on the computer it all scared me to death and who am i kidding shes my baby. We arrived back at the drs office and he came in and looked at her scans. He says she has a true AVM. It has caused some damage to her mandible bone. And he starts giving us our options and risks…keep in mind i never told Ash anything…I thought he would give us the opportunity to talk to him alone. My baby girl grew up right there before my eyes he started saying words like stroke and paralysis and she remained so strong. i could see the fear in her eyes but she was so strong. He then told her those risks were 2% out of 100%. She then looked at him and said you just told me an AVM of the mandible is 1 in a million and I have that…Am i suppose to feel good about 2 in a hundred chances. Shes a smart girl. The doc says we can choose to not treat and she may never have a problem. If we choose to treat he wants to do onyx embolization treatments immediately after doing an angiogram. This has to be the hardest decision ever. Shes never had any bleeding or any pain. What if I make the wrong decision? What if this isnt the right Dr.? What if she goes the rest of her life and it never bothers her? But how can we live with this ticking time bomb? Were all overwhelmed. They want to do her first treatment during her Christmas break from school…they told us to take a week and decide. I just cant bring myself to ouck up the phone and make that appt. I never asked the most important question in that appt bacause I think I WAS SCARED OF THE ANSWER…how much pain is my baby gonna go through after each of these embollizations? So now I sit and wait and cringe everytime the phone rings because I know sooner or later the final decsision has to be made…so again Im doing what Im good at WAITING.
I’m sure this is all very overwhelming for you and your family. I would highly recommend seeking at least one other opinion. It never hurts to do that. You definitely want one that specializes in AVMs. Good luck to you and to your daughter.
I'm not sure what's worse, knowing you or a loved one has an AVM that requires the decision on whether to treat the AVM or not or not knowing and finding all of this out thru what can be a critical emergency situation. I will share with you my experience in hopes that it may help to make you feel better about the pending decision. While every AVM diagnosis is unique as there are so many variables that need to be considered when the doctors recommend a treatment option. My experience is that my AVM discovery occurred in an emergency situation and I, nor did my family, have a choice in what the treatment option would be. They performed an emergency embolization on me the night of my initial bleed. This treatment option treated 95% of my AVM and my hospital stay was much longer than I thought but this was because of my brain bleed and not the embolization. My open brain surgery was cancelled 2 weeks later because the embolization was so successful. Four months later, I can do anything and everything I was doing before my AVM discovery and I am now preparing for a single stereotactic radiation treatment (CyberKnife) to treat the remaining 5% of this little creature. I hope that this provides you with some ease in making this very difficult decision.
Blessings and health to you and Ash :-)
- Michele