My son just recently had another embolization of his spinal AVM. The next moring he got up and could not walk without assistance. Within a few days he slowly got strength back. I guess it was from the swelling pressing in on his spinal cord. He was on steroids for 2 weeks. He is walking better but still has to hold onto walls for support. I am not sure what we will be doing about school.The school knows you are going through this and they are of no help. He is also much more irritable and tired. He has no real pain now. Praying this is it. And that he will strengthen his legs through time. He just is very unmotivated and I have five kids and can’t keep on him 24/7 to care about himself. Yahshua has healing in his wings and am expecting annihilation of this invader to my son’s body.
Hope your son continues to heal. Sorry your son’s school isn’t being cooperative. May all of this work out.
Your son has all the right to feel what he is expressing. We as patients go thru those stages. Give him all the love you can. Ask other family to help you with your son or the other children. I’m surprised that the school isn’t sending school work home, even with one of his classmates. They have the opportunity to visit; and he gets to try continue his education. I would also be asking the teacher to come and see your situation too. Most people have kindness in their hearts. Best wishes to all of you.
Thak you for compassion. Other people need to learn to have some. Because Matt looks normal he is having a harder time.
After all the reading I’ve done over the last 2 years about AVM’s, I just have SO much empathy for those with spinal AVM’s. I can’t think of anything more terrifying and for your son to be going thru this at such a young age is just not fair, is it.
One thing I find with this condition is that the patient is really left on their own to deal with all the emotional trauma and anguish that goes along with having an AVM. My one wish would be that there was more all around care and counselling and support to help people thru this! There is for people with brain tumours and cancer (within our health care system in Canada) but we expect a young boy who recovering from spinal surgery and can’t walk, to just “deal with it”?? How does this happen?
Is there any way you could ask your doctor for some kind of emotional support or therapy for your son? Is there a way to arrange some kind of physical therapy for him to guide him in strengthening his legs? I live in Canada so our healthcare is different but I just feel for your son and for you because this all must seem so overwhelming for both of you. My thoughts are with you.
They just called me from school that he fell in the hallway. He was all alone and had to drag himself across the floor to the wall and pull himself up. I just hope this didn’t put more swelling on his spine. This is just so painful we are alone except for Adonai (G-d) to deal with this. I am crying my eyes out because I do not know what to do. This is his life unless there is a miracle (which I am expecting).
Shelly we are praying for you to find strength to deal with all of this; and for your boy to have faith and understanding why he is experiencing all this; and for your family and friends to find compassion for you both. I ask the power of us all; to bless you with healing love.
With you living in the States, can you talk to the media, or your local political representative, to get some kind of support. I understand that President Obama is trying to get health care for all citizens of the US; whether they have insurance or not. Canadians are lucky that way, we’re covered, but our politicians are making that window smaller; which is a shame, until they or their kid gets sick.Maybe if we all start talking louder, people will know what AVM is. Things change with a majority; singing the same tune. Try your hardest to stay strong.
Thank you so much…we should be able to get him a special bus to pick him up and he has had to walk with his cane at school. He just needs to learn to be careful. He has one teacher who has helped me out so much. I wish I could do something for her. I know it’s her job but so many of them really could care less. They have too much to deal with like everybody.
Hey Shelly my son too is very tired and irritable, my school home bound joey for a little while and his dr sent notes to school for half days we got signed up for IEP for leaving class early and other accommaditions for him and it worked they are doing what the doctors asked luckily for us they have been great. I was told by one of his doctors as the avm progresses and as he gets older and cant get around as well I should home school him. If it gets to bad for him to attend school check home school out. I also want to let you know Joey falls all the time it did effect his balance.
Sometimes it is just the swelling of the spinal cord. After Matts surgery he fell a few times at school. Does he use a cane? At first Matt had a cane and a special bus because he couldn’t lift his foot high enough to get on the bus. We had many problems and were considering homeschooling. But after about a month or so he improved and has made it. PRAISE YAH for he is gracious. This is such a difficult thing to go through. Unless our kids have a deformity or maybe paralyzed they seem normal so we are alone to figure this out. We can’t see in their back to know what is going on. How do I deal with keeping on top of it. Matt has been very tired lately. Doctors don’t really know much about this(spinal avm) problem. Are they gluing it(embolization). Make him walk with a cane find kool thing to put on it. Matt hates being the center of attention…he had to get over that quick because he is especially when he is having problems ie walking, standing/sitting. Our school has been very helpful Matt was already in iep’s for a learning disability (ADD) and there is a teacher that would work with him alot to try and help him through his classes.