Hi, I am new to this group my heatlhy active 10 year old son was diagnosed on July 25 with a left tempural AVM. Before the 25th of July 2011, I had never even heard of an AVM, he had no symptoms prior to the 25th, he would only complain of slight headaches. We discovered the AVM whenI found him face first passed out in the yard after playing with the dog, I really thought he was knocked over and had an concussion (sp). He has had multiple MRIS and a eeg and has no signs of seizure activity. On July 27 he had an angio, which was more of an exploratiory angio. We have meet with the neurosurgeon at Childrens Memorial in Chicago and he is scheduled for an embolization on Sept 28 and a resection on Sept 30. His AVM is very large and currently it is superficial and compact, all good things. The neurosurgeon had explained to us that due to the size of his AVM we really don’t have a choice other than to removie it. We are trying to wrap our minds around what is happening, I was just curious if anyone can tell me what to expect after surgery or if anyone has had procedures without a bleed. Thanks for you help.
Hi Kathy. There are 3477 members on here so you are no longer alone. Please be sure and join…http://www.avmsurvivors.org/group/parentsofavm
Welcome to the group Kathy.
Sorry to hear about your son’s condition, but sounds like you are moving toward fixing it. My wife had several embolizations, two proton beam radiation treatments, surgery to fix an aneurysm, and surgery to remove the last of the AVM–all without a bleed.
It’s impossible to know if he will have any deficits following the procedures, but his youth should work to his advantage.
Hope this helps. Be sure to keep us informed how he does.
Ron, KS
I’m really glad your son’s prognosis is sounding good! This must be a terribly tough time for you all - I hope he’s not too scared or worried about what’s going on. As Ron said, do keep us posted on how he’s doing! I hope he makes a swift recovery!
Take care! x
Kathy, we just found my AVM in April. I didn’t have a bleed, or seizures, but had been having migraines for years. After a multiple day migraine, my husband insisted on a CT, which led to an MRI. My AVM is rather large (I wanted to smack the resident for his lack of good bedside manner when he showed his surprise upon seeing it. I already knew it was large, but it really makes you feel nervous when a doctor is surprised by it.) Due to size & location, I’m not a good candidate for embolization or surgery to remove my AVM, so we are shrinking it with Gamma Knife Radiation.
I did, however, have surgery on two aneurysms that were caused by the bleed. So…my non-bleed, craniotomy experience–I was in the hospital for 3 1/2 days. Had some pain for few days, then several days of lots of pain. Went to a large, 5-day dog show beginning 2 weeks post surgery & wore myself out, even with using an electric wheelchair. Was back at dance class 4 weeks post surgery. Went back to school on time for teacher inservice week 6 weeks post surgery, and was teaching 7 weeks post surgery.
If I remember correctly, I was off the prescription meds by the end of the 3rd week, and only needed an occasional Tylenol at 5-6 weeks.
I tired easily for about 6 weeks, but am now pretty much back into the swing of things. Today is my 2 month surgery anniverserary.
So glad you are doing well! Thank you so much for sharing your experience with me. Do you mind me asking what kind of meds you were on after surgery? Also, did light or loud sounds bother you after the suregery? My son is currently not on any meds other than an occassional tylenol for headaches.
Thanks again.
How do I join the parents form it won’t let me click on the join group button???
Yay…I see it finally worked!
I have always been light & sound sensitive when I have migraines. When I woke from surgery, I was definitely sound sensitive. I shushed my mom & my husband says I told him his breathing was too loud.
Between Gamma Knife day & the day of crani, I figured out that IV pain killers make me nauseous, so I stuck with taking Vicodin in pill form while I was in the hospital & as needed afterwards. I took Tylenol when I hurt a little, but wasn’t in as much pain.
Before my diagnosis, I took a LOT of Excedrin Migraine–the more stressed & more tired I was, the more headaches &/or migraines I had. When the Excedrin wasn’t enough, I’d take a Maxalt & if that wasn’t enough, I’d add a Fioricet. My family doc fussed at me about the Excedrin because the damage the aspirin/caffeine combo would do to my stomache. Then, that week, I was diagnosed with the AVM, so Excedrin & Fioricet are no longer an option. Right now, I have an occasional Tylenol for mild headaches. In the past month, I’ve only taken one Maxalt–I had aura that I associate with migraine while I was teaching, so I took the Maxalt to stop it before the pain hit.
Hi Kathy,
Having caught the AVM before a bleed is a big plus! Removing it this early, before it can grow and crowd out other areas of your son’s brain, also suggests that there will be a good outcome for your son.
Many people don’t know that having an AVM blocked off or removed should actually increase blood flow to the rest of the brain; since the AVM is a “superhighway” for blood (and all the good things blood carries), it takes more than its share of the blood “traffic.” Doctors call this the “steal” phenomenon. Once the AVM is treated, the rest of the brain gets a bit of a boost.
So I would say, talk to the other parents and prepare for all the things that they say might be necessary, but expect good things!
-J
Hi. I’m 14 years old, & I was diagnosed with my AVM June 2. I also had no symptoms, the occasional headache. But who doesn’t get them, right? My dad found my passed out on my bedroom floor after I had cried complaining of a headache. I can’t remember any of it. But the last two things I remember were helping my favorite teacher pack up her room, and my 8th grade prom. Good memories. I’m sure you’re scared for your son, but my parents were for me too. Many people were. Luckily we had supportive family and friends that helped us out a lot. I was on the news and in the newspaper. My friends and boyfriend had many benefits for me. I hope your son is okay. And know you’re in my prayers.
Brooke Lynn-
It sounds like you have had the same experience as my son. His had not bleed or ruptured and is scheduled for an embolization on Sept 28 and a resection on Sept 30. He just read your post and was happy to hear of another person that had the same symptoms. Have you have any procedures yet? If you don’t mind me asking where are you being treated? Thankyou for your prayer and know you are in ours.
Kathy and Jacob
Hi Kathy. No, I was in the hospital for 35 days, I missed my whole summer. I missed my best friends birthday. I missed 2 anniversaries for me and my boyfriend. I missed a lot. Mine was ruptured. I bled and it took them 3 weeks to get it all out. I’m having surgery on the 30 of this month. I’m having a gamma knife, and embolization. I went to MUSC of south carolina. And it’s no problem, you guys deserve to be prayed for. It’s what saved my life, and I’m happy to do the same for anybody else who has to go through this awful experience.
Brooke Lynn- Best wishes for the 30th be will be praying and thinking of you. Please keep us posted on how your surgery goes.
Okay. Thank you so much. And I hope your son lives a wonderful life with no worries. He’ll be fine. God is on his side. (:
Hi Kathy,
My son is also 10 years old and never had a bleed. We have been dealing with his AVM for five years. He has a lot of procedures. The best news is you found this site…Welcome!
Kathy
Welcome, My 19 yr.old daughter was diagnosed this June also with a large avm in her obsipicle lobe. Her only prior symptoms were what we thought were migranes.Her Dr. ordered an MRI and there it was. She has had 2 embolizations sense with a 3rd one scheduled in Nov. She has had no side effect after surgwry other than still having headaches.With in days of the surgery she was up and moving as if she had had nothing done. She returned to college last week and is loving life. I hope that your son has the same luck as my daughter. Every AVMm is different as is every patient but hopefully our childrens youth is on their side. Stay on this sight often the knowledge and support I have gained is immeasurable. good luck .
Lisa
Lisa, thank you for your positive comments, we are scared to death and hearing a positive outcome give us a hopefuld feeling…
Mickie
Do you mind me asking what procedures your son has had? Where is his AVM located? Jacobs is on his left tempural lobe it is not by the speech center but the doctor is slightly concerned about the motion center it is feeding in to. We are scared to death that we currently have a very active 10 year old and the fear of him losing his motions skills on his right side makes me numb. However, we are trying to focus on the positive, the doctors tell us his AVM is superficial and compact and can be embolized and resected. However it is very very large.
It is just so hard to understand how a seemingly healthy “normal” 10 year old can have a ticking time bomb in his head. We are really trying to wrap our mind around the thought of what he has to face. Everytime I start to think about the journey we have in front of us I start to feel sick to my stomach.
Jacobs procedures are scheduled to start on Sept 28, 2011 he has been experiencing a few anxiety attacks lately. Which i know are normal. The hardest part is when he asks me questions that I can not give him the answers to and I don’t want to lie to him, so I just tell him the we love him and god loves him and we have an incredible team of doctors. The hard part is when I tell him this tears start to well up in his eyes and I feel so helpless.
I know I am going on…
Thanks for listening and sending prayers and good thoughts to your son.
Kathy
Hi Kathy. Welcome to the group. I hope you are finding a lot of good information here. I’m glad there is a plan to treat your son’s AVM soon. I wish you all the very best of luck.