Hi Everyone, I know its been a while since ive posted ive been venting on facebook and on madisons caringbridge at www.caringbridge.org/visit/madisondeavellar the past few months have been very tough...madison is going to be 15 and is in the height of hormones she also has a severly impacted wisdom tooth and the hormones and trauma in the tooth have woken up the beastly avm. She is swelling, in pain and bled last week for the first time in a long time. We have had to make the decision to finally move forward and remove the teeth. Up until this point madisons avm has been minimally symptomatic and i have always held on to the hope that maybe maddy would beat the odds and never have to have any procedures done. that time has come to an end. I need to open my eyes. Ive always been scared that if we embolize the arteries will re route themselves and the avm would grow..however now the trama from the tooth is making that happen so we are in a lose lose situation. She is scheduled for a two day surgery on aug 13 and 14 in boston. She is going to be embolized with particles that will disolve over time so they can stop the blood flow and remove the tooth and then hopefully the flow can remain its normal course of flow. I know one of two things will happen we will remove the teeth and this avm will calm down or we will remove the teeth and the avm will have more space to invade i am scared beyond belief. Last night madison was in the worst pain i have ever seen her in..i brought her to the local hospital where i live and it was a nightmare they were frigen useless...they said "well mom guess we are gonna have to take your word for it becuase we have never seen or heard of such a thing" are you kidding me....I am at a loss..i cant stand to see this hurting her so badly any advice would be more than helpful...how do we watch our babies go through something like this and not be able to take away the pain...
As a mom of a 16 year old who endured hemorrhage from AVM followed by embolization and surgery months later; I know how intensely scarey this is! Please know you are in my thoughts and prayers. Seeing your daughter in pain is enough to break down even the strongest person but it is more important to show face that you are confident she is going to be ok. On the inside I was a nervous wreck but on the outside I was the strongest mother you have ever seen and she never saw me break down although I did many many times in private. The surgeons are honest with what could be result of surgery but if you are confident with your surgeons I would trust the decisions they make to proceed with removal. Given the option of doing nothing with the AVM left our daughter with more anxiety and in the end it had to be her decision to proceed.
Having had several local EMERGENCY room visits I can relate to the nightmare. I now bring a binder with me that has every dr. note, report, catscan, mri with me to help "educate" them on my daughter's medical history and always have them call my neurosurgeon before they proceed with anything. Emily's AVM was successfully embolized and removed but she has had unexplained pressure at site from time to time.
I think it’s wonderful that you, a very frustrated mom, can vent here in a safe place. Posting here is an excellent way for you to take care of yourself. The analogy that comes to mind is like the instructions in an airplane. Put the oxygen mask on yourself first and then put it on others.
Maddy sounds like an incredible person. As her mom, you have got a plan for her treatment. I don’t think there are many other places where the medical treatment would be better than in Boston. Probably the worst part is watching her pain and waiting for the surgery. But you and Maddy have tons of support here.
Thanks for posting.