My 10 year old son

Bingo, I had a AVM in the same area back in 1977. Than I was 20. You do the math :-). I would be more than happy and explaine what I went through. I had it done at Michael Reece Hospital.

Kathy, I know how overwhelming all of this is. My daughter (age 10 at the time) had a left frontal lobe AVM. She had an embolization and ressection in January of 2010. Her surgery went very well, and her recovery was very short, so be encouraged. Please feel free to visit our page to see her journey. Kids handle these things very well. We parents have a tough time though. Please let me know if I can answer any questions for you.

Hi Kathy and welcome!!! This site has been a God send to me thru my healing and you came to the right place to help answer some of the many questions that you’re going to have. There are so many of us who have survivied an AVM diagnosis yet I am very sorry to hear that we are now adding yet another member (your son). This is a very tough diagnosis to have to deal with and sounds like you have a great neurosurgeon who is putting together a treatment plan for your son!!!

Many blessings to you and your son!!!

/Michele

Kathy,
I am still scared on a daily basis! Even more so now that she is off at college and I cant watch everyday myself. I have to believe there is a reason that my daughter and your son found their AVM’s before rupture! There is something special planned for them in life that none of us understand yet and that is why we were all given a chance to get rid of this monstor in their heads. Stay strong. it is ok to be scared and cry in the shower if you must, but believe in your Dr.s and the power of all the prayers and well wishes from everyone at home and on this sight. Give your son a hug from us here in Fredonia, Ny. After he conquers this there will be nothing in life he canot handle. Hope it helps knowing your not alone and not the only one that is scared. I think what your feeling is very natural!
Love from Fredonia,
Lisa

Susan
Thank you for your kind note, yesterday after I read your post Jacob (my son) and I went and checked out your story and your site, let me tell you it was a breath of fresh air and hope, Jacob has been having a few anxiety attacks lately and after reading Lindseys story and seeing her photos it really put him in a comfortable place. In fact now he think he will be back on the soccer field a week after surgery (right now I am letting think he might, positive thoughts!).
I know every situation is different but I have a few questions if you don’t mind me asking
How long before Lindsey was back at school? Did you notice a change in her personality? How big was her incision? How soon before she was moving after surgery? Was she in PICU after surgery? What type of embolization did she have did they use the “clogging agent”? How did you answers questions she had that you just could not give her the answer to?
Sorry all the questions.
Thanks for you support and positive words!
Kathy and Jacob

Stephen
I would love to hear your story. Jacob is having his done at Childrens Memorial In Chicago.
Kathy

I am so glad that Lindsey’s story has been of some help. I know there are just so many questions when you start on this journey. I will do my best to anser them, knowing that you understand that everyone’s experience is different. However, you can definitely take comfort in knowing that there are many many positive stories involving kids, on this site. Kids are so very resilient. We parents have a much more difficult time. Believe it or not Lindsey only missed 8 days of school. When we started her back, she went for half days for a week. Many kids are too tired to return that quickly, but she did fine. I didn’t notice any personality change. Her incision for a frontal lobe AVM went from her left ear, over her head and half way to her other ear. The surgeon took very little hair. Lindsey came out of surgery not on a ventilator, and was moving everything just fine. She stayed in the PICU overnight and then moved down to a regular floor. She didn’t get up and walk for a day or two. She had her embolization with onyx, the day prior to surgery. It cut off the blood flow to the AVM. She was discharged 3 days after surgery. She did have some dizziness. We tried to explain things to her a thoroughly as possible, without sharing all of the scary risks. We relied heavily on our faith in God, and basically told her that everyone has a story, and that this would be hers.

I hope this helps. Feel free to message me if you want to.

Hi Kathy
I will try to keep my “Fun and Games” as short as possible. I want to believe you understand a little what a AVM is. A couple things I first want you to know. There is nothing I was told not to do after recovery. I Scuba Dive ect. One of the Major situations I didn’t do was to have follow-ups. About 15 years after the surgery, I found out I was having " micro"
seizures. The area causing them was the area where the AVM was located. The Seizures were not noticed.
Now the recovery was a pain. I was partially unable to move my right side. That all came back in about 6-9 months. Walking took time. they had to slice a tendant that was connected to my jaw. Talking was a little difficult as well as eating. That all came back. One learns that you can’t rush things. I have a 3 inch in diameter dent on my left side of my head just above the ear. Now that Dent is not done anymore most of the time. I have 22 silver clips in my head.
I was told / my parents were told that I was extremely lucky. I was one of the first to recover so well. My age had alot to do with it. Seems more and more AVM situations are brought to everyones attention. This is Great. Wish I had it back than.
My Very Best Wishes

Hi Kathy, check out my page.