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AVM Survivors Network

It's been a long road

I haven't really been here much and I've stayed away from reading too many updates and things that pop up in my email. Truth is, I would read about so-and-so and their recovery, or there stories and I'd get discouraged. So much so that I would have anxiety, horrible dreams, and just not be able to function or breathe right. I came to a place for support and it just became mentally draining on me... to know what people have gone through, what they've experienced, and their hardships really made me fear the future for my daughter. How could I continue to look towards the future if the future scared me so badly? I had to step away. Had to regain my strength, and reroute my focus.

1. Live each day one day at a time. The bible even says to live that way, so I need to. "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:34)

2. As my daughter's craniotomy came closer and closer, images of what would go on during surgery, the procedure of removing the AVM, the aftereffects of surgery, what could happen, what might happen, dreams of not having my daughter in my life anymore... I couldn't go there. It was such a bad and scary place to let my mind wander to that I would just break down and cry. Who wants to put their 5 year old little princess in the hands of surgeons and fate, not knowing the outcome? It sickened me. I finally had to let go, knowing that whatever came our way, we'd have to face it, but also, God would be there to get us through: The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” (Deuteronomy 31:8)

Well... My daughter had her craniotomy on Wednesday. It's now Sunday. She's not the spirited, happy little princess she always is, but with time, I think she'll bounce back. It's hard to see her not smiling, not playing, and not talking. It will happen. There will be changes, but I still have my little girl. I still have her little hand to hold, and with time, I'll have her to hold and play with again. Her brother will have his best friend again. Time and a lot of patience and loving will bring back our little princess.

I can't say that everything is perfectly fun and going great for her, but I can say that this is all manageable so far. We can deal with it. We can get through this. And, even if it brought me discomfort and anxiety to read some of the things I've read, it has still been helpful. It's helped me prepare, to prepare her. Sometimes it may feel like people post things around here to try to out-do others with how horrible their situations are but I honestly know I don't have to try to find people here that are generally interested in helping and informing others. Thank you for your support in the past. Thank you for your knowledge. It's helpful to know that yes, this is an awful thing for my kiddo to go through, but others have gone through it before us, and others have gotten through it... so can we. Thank you for being open and sharing ~

I wish your daughter a complete recovery, Melissa. I understand what you are saying about the anxiety from reading other experiences here. I kept repeating to myself that in the end, information couldn't hurt me or my child, but not having the information might. I'm so glad your daughter is past the craniotomy, and I hope you'll keep in touch as she recovers. Best wishes!

Thanks. This is a really good place for support, it has been in the past when I could handle it, and now that we're through the crani I feel better about coming back here for info and support. I wouldn't have known about the different noises and things going on in her head if it wasn't for being here I wouldn't have been prepared for that... It has been a good place and I know it is for others as well. I'm really happy this place exists :)

Sending many healthy blessing to your little angel. I hope each day she is feeling better. She's a strong beautiful child and she will be in my prayers for a full recovery!

I pray for your daughters complete recovery as well as for you & your family. I know how tough this can all be.

I myself have an AVM it was discovered three years ago when I had a mini stroke. I have had one round of non-evasive radiation surgery, that was three years ago right after they found it. Going back for a follow-up last year it was discovered that the radiation did not get it all, so sometime within the next couple of months I will be going back to Omaha to have another shot at this. This time even the the AVM is smaller but the radiation dose will be larger to make sure that they get it all this time. Mine also is very close to the brain stem that is why traditional surgery is not an option for me.

I love my doctors & nurses in Omaha at UNMC, they have been amazing. I have had to learn to put all of this into God's hands because the "what if's" have been driving me nuts. I want to be here to be a part of my son & grand-children's life's. When they are running the tests on me they have to be careful about the dyes/contrasts that they use on me, back in 2007 I had kidney cancer so I only have the one kidney now & the dyes/contrasts really affect that kidney.

Again I will be praying for your daughter & you & your family.

God Bless