The waiting begins

I hope everyone had a great Holiday season and a Happy New Year. I sent Madisons test results to Dr. Yakes today. I will be anxiously awaiting what he has to say. I just dont know how to make these decisions for my daughter. I cant help but wonder what if I left it alone. What if it is never gonna change. What if I put her through treatments for nothing. What if I do nothing and it gets worse. What if I do nothing and she bleeds to death. What if what if what if…I am certainly my own worst enemy right now. Please help if u have any advice. Thanks Love you all. Sherri

I don’t know what to say. It sucks. And nobody has the answer to the “what if’s” but it doesn’t mean we don’t still wonder about them.
I actually feel lucky that my AVM is mine. If that makes sense. I can’t imagine how hard it was for my mom, for you, for any of the family members to make those decisions. What ever decision I make, I made it. And I have that little peice of control over the AVM. I don’t know if that made any sense.
I can’t offer any advice on this, except from the perspective of the daughter. I’ve been where Maddy is now. Know that she trusts you, will be grateful for whatever you decide based on the facts that you have. You can only make the decisions based on what you know, what the doctors know, and what the most likely scenario is. Maddy knows that you are looking for the best answer and she isn’t ever going to doubt that you always had her best interest at heart.
So don’t worry. You will make the best decision you can. And hey, if it helps at all, unless you have a time machine you will never KNOW what might have happened if you had made a different choice. So there! :slight_smile:

I just think you will know when you “get there”. Be patient. Making the decision for someone else is heart wrenching. Just keep getting opinions until something feels "right’. All your other parenting decisions were probably what your gut instinct told you to do so this will be the same. Have faith and follow thru with these steps that you are doing and each step will help you get closer.
Get the answers to all your questions. What percentage of facial AVM’s do grow? It appears like it would be better to treat it before it grows but maybe not? These are all things you will find out either from Dr Yakes or some other neurosurgeon.

I kept asking myself…“how will I ever forgive myself if I make the wrong decision” -(read panicked, crying, a mess) and I still think that but I know in my heart that when we made our decision for our son, it just felt like God had led us there so I will stand by our decision no matter what happens.

I will be thinking of you. Please try to let us know as soon as you can what Dr. Yakes suggests. My thoughts are with you Sherri. You can do this and your daughter will be okay because she has you by her side and that is what she really needs most.

Hi Sherri ! I have only just joined this site, and to be honest, I have done it the wrong way round, as it was to announce to the world that my precious son had been discharged from hospital after a 4 and half year fight to annialate an AVM that was inoperable ! Matt eventually had gamma knife radiation, which, just before christmas, we were told had been successful. My purpose in e-mailing you, is that in the early days, when this was all just beginning, I didn’t know which way to turn either. You are presented with so many facts, most of which takes a while to unravel and understand, and you find yourself not knowing what to do for the best etc. All I can say is, take each day as it comes, listen to what your doctors say, they are the experts and know exactly what they are doing. There was a time when I thought we might lose Matt, he was having lots of seizures, had a couple of bleeds and I found the whole experience absolutely frightening. The doctors were wonderful, took their time in evaluating everything, and slowly, piece by piece, they devized the best way to tackle the avm. When they said at first, that it was inoperable and v large, I thought that was it, but there are now so many ways to tackle avms. Take deep breaths, try and keep calm, it really will work out ok. I used to speak to Matt’s doctors secretary quite a lot, probably for reassurance if nothing else. I didn’t sleep much in the early days, was always waiting for a seizure to happen. She was wonderful and she always said, one day, you will look back on all this and it will be behind you. The same will happen to you and your precious daughter. Be guided by the doctors, however scarey it may seem, and let them do whatever is necessary. They will answer all your questions, and when it feels right, you will know. Take care, much love and KEEP STRONG. It will be ok. Christine xxx

Sherri, my heart goes out to you right now . These decisions as parents are gut wrenching . You will make the right choice . Believe in yourself. Do alot of research. You are your child’s best advocate ! The doctors have a great educational background, but no one knows your child like YOU. Go with your gut . The most recent tool I just bought was a digital voice recorder for the neuro appointments. They give you sooo much information and in my case, it seemed to change from appt to appt . So we nipped that in the butt and now have our appt from November on my computer to listen to at a moments notice . Hang in there and thank God for this site !