Hello everyone. I am new to this forum, but have known about my son's AVM for over a year. Last June my son Lane had a seizure. It was terrifying, I found him in his bed, it was about 630 in the morning. He was taken by ambulance to our local hospital, where they did a CT scan and found the AVM. He was then airlifted to Cardinal Glennon Hospital in St. Louis Mo. My world fell apart. It was like my son had a ticking time bomb in his head that could go off at any minute, I was a mess. He took it with no problem, and vowed to live his life like nothing was different. He was 13 at the time. The neurosurgeon decided at that time that it was best to just watch it for a bit since there had not been a bleed. So we went back in 6 months, January, for another MRI and dr visit. He then decided that it was time to go ahead with planning the surgery to take it out. We decided to wait until May after school was over, so he would have plenty of time to recover over the summer, and he was also graduating into high school, so we didnt want him to miss too much school and end up not graduating. So May 21st we went to the hospital. Lane was admitted and took to the ICU. They came and got him around 10am and did the first embo. It took about 4 hours. He did great. Had a day to recover and then the second embo was on Wednesday it lasted 6 hours. They decided at that time to keep him sedated and on a ventalator because they wanted to keep his BP low to try to prevent a bleed. Thursday they took him off of the ventalator, but we were to keep the room low stimulation, meaning let him rest and not many visitors. We did that. Friday morning they came and got him to do the cranio. We were told at first it would be an 8 hour surgery. After we got to the waiting area before the surgery, one of the surgeons in the team told us because of the size and location of it was very critical so it would probably take about 12 hours. Man was that a long stressful day. We got too see him about 930 that night. It was horrible, he was not acting like himself, asking the same questions over and over again, he was just all over the place, trying to get out of bed and his left arm was moving by itself. He said he was having impulses that he couldnt control. I thought he had memory loss and was going to be a totally different child. I was wrong thankfully. IT was just temporary. He did great! After a week in ICU and 2 more days in a reg. room he got to come home. We were there a total of 13 days. He lost part of his vision in his left eye, and he is weak and has problems with the left arm and leg, but he is doing therapy and it is doing wonders. He is almost back to himself....I thank GOD everyday that he warned us about this before he had a bleed, and that it was operable and everything went great. About 5 days after he got home he started losing hair...
My only concern at this time is he has lost over half of the hair on his head, to the point that he is half bald! Other parts of his head the hair is growing slowly, Is this normal? I know that is alot of surgery in one week and alot of anesthesia and alot of stress on the body. Im just worried that it could be an infection.
Thank you so much for listening to my story.
GOd Bless you all!
Hi Stephy! Welcome and you are in the right place for ongoing support! While I am sorry to hear all of what you and your family has had to endure with your Son's AVM, I'm happy to hear that he's been treated and on the road to recovery! Our medical community has made such significant advancements in this area which is truly saving lives - Thank GOD!!! One thing that I will share with you is that I have had some major hair loss as a result of my emobilization and this may be the one of the many reasons why your Son has experienced this. So while I do think that this is normal, I would also pass this by his medical team to get inputs from his experts! Hang in there and please know that better days are ahead for your son, you and your family!
Till then, Peace be Yours!!!
Michele
Hi, Stephy, this article might help explain the hair loss to you: http://anagen.ucdavis.edu/147/letter/nuria/marti.html
It is about an aneurysm, not AVM, but the irradiation and its effects are the same. Many docs won't bother to mention that arteriogram and embolization expose you to radiation; they take it for granted and don't realize that most people aren't aware they are being irradiated. As the article says, the hair should grow back. Where I disagree with the article is the statement that hair loss is extremely rare; I think it has been under-reported, and it's not so rare.
My 13 year old son had an AVM removed from his face three months ago. He just left to go to Florida for 6 weeks for a summer intensive, and I have been having uncontrollable, baseless panic for 2 days. I'm sure it has something to do with the whole AVM scare.