So tonight has been a long night. I anticipated that I would hear from Childrens Hospital tomorrow and when the phone rang at 8pm and I saw it was them my heart stopped beating. The cat scan revealed that there is thickening of the mandible on the right where the avm is located however the cortex of the bone is still intact. I made her clarify that and my understanding is that it is on the right hand side only however it has not made its way to damaging the jaw bone already. The nurse stated that at this point they are increasing Madison’s visits to every 3 months instead of once a year. They also stated they still do not want to treat her as of yet. She basically told me to pay attention for more bleeding or loose teeth. So even though I am so happy that it has not affected Madisons jaw bone (as of yet) I know that is a concern for the future. The nurse did however emphasis to me that maddys avm is very involved. I know from her recent report that her coratid artery and poratid gland are involved. (ugh). This is such a long roller coaster ride and I dont see where to get off. I am in no position to even comment on how I feel right now because I think I am just numb. I dont know how to feel. I have told Madison the results and we smiled and cried together. We both just know the road we face is just beginning. I have decided that I am going to send her imaging to Dr. Yakes in Colorado to get his opinion. I hoped it wouldnt get to that point but I feel as a mother that I need to hear what he has to say. Madison know we need to choose a Dr. and a course of treatment at some point and she is scared we wont make the right choice. I have assured her tonight that my mom and my aunt are both powerful in heaven and that they will never let me choose the wrong road. I hope someday I will find a purpose for this journey that we are on. I thank you all for your prayers over the past week, and all of your wonderful and touching comments to me and maddy. We love all of you.
Well, I’m glad to hear that the bone has not been affected yet and that Madison’s doctor’s are going to stay on top of it by seeing her every three months. While I know it’s scary to hear that she needs to be seen more often, be glad that they are being proactive instead of waiting for something to happen and then doing something about it. I think you are making a very good decision about sending her file to Dr. Yakes for another opinion.
That is great news! I know you are on top of things and will make the best choice for your darling Maddy. It is a scary process but you both are handling it with grace. It is always a good call to get a second opinion. One good thing? If you guys do travel here to Denver, we can meet! I know the girls would enjoy that.
BIG hugs to you both! Jody:)
Thanks for the update. I know how scary this all is and I’ll pray for everyone involved to make the right decisions.
Hey- found this journal article today about treatment of AVM’s in the mandibular regions that involved the bone. http://www.joms.org/article/PIIS0278239108010641/abstract?rss=yes
Honestly, I don’t understand half of it…but it seemed to indicate that these were all resolved without a ton of destruction to the bone.
Did Maddy’s docs tell you that if it had gone into the bone they would be more likely to want to treat? I mean, why did they freak you out so much about the possibility of bone involvement? What would that mean in her case? Obvoiously you want the least amount of anything involved, but what “difference” does it make it terms of hers progressing and their idea of treatment? You know what I mean???
I am so happy to hear it is not in the bone. I know this is the beginning of your journey but stay strong. I also agree it is a wise decision to seek a second opinion from Dr. Yakes. I will continue to send my prayers your way.
I feel for you and you are in my thoughts and prayers and Happy to hearr that the bone isnt effected and I ask God that to give you discernment and to guide you in this difficult decision. Lots of love to you both…
I totally missed this post. Am thinking of you. I have to say that as in most parenting decisions, when you get to the “right place”, you will know in your heart.
When we had to make the decision for my son, I asked my “father-in-law in heaven” to please find out what the right thing to do was and he did.
I think it is a great idea to at least consult Dr. Yakes. Good luck.