Hello, I’m glad to have found this place. My heart is broken for my son. He’s a 16 year old hockey player, Jr Firefighter, and in trade school to be an electrician. On Jan 22 he was knocked out at a hockey game. We got him off the ice and he siezed, had one fixed and dilated pupil, and was taken by ambulance to the children’s hospital. They did a CT scan and almost immediately started talking about neurosurgery, but no one told us why. I assumed he had a bleed from the way his head hit the ice after taking an elbow to the chin, and that they were talking neurosurgery to evacuate a clot or do intracranial pressure monitoring. Then he went for another CT, and a couple MRI’s. Finally from the things they were saying, I figured it out and asked them the next morning if he had an AVM. They were shocked that I knew what one was until they realized I’m also a registered nurse. He spent 4 days in the Peds ICU, had more MRI’s, a cerebral angiogram, then was discharged to home with zero follow up, a massive concussion, an AVM that some doctors say had a bleed and some say it didn’t. We took him to Boston Children’s for a functional MRI, and just Friday found out that because the AVM sits right in the middle of the motor strip for his right leg and hand, neurosurgery wants nothing to do with operating due to the risk of paralyzing his leg and hand. Thursday they are meeting with the Proton Beam/Rad Onc to discuss the possibility of radiation, but the doc has pretty much prepared me to accept that no one wants to do anything with his AVM because no one wants to paralyze him.
My heart is broken for him though because he will never play hockey again. He will never be a firefighter, and because he’s missed half of the quarter of school he may not be able to continue in his trade school. This AVM has so disrupted his life that I almost wish we still didn’t know about it. Our community has been very supportive. We live in a small town and he is a well loved kid. He’s been on tv, I’ve been interviewed on the radio, his story has been in the newspaper. We are so lucky to have so much community support, but none of it gives him back the things he loves. I have many questions. Reading some of your stories gives me hope. Thanks for letting me in. Oh, my name is Dawnn.
Hey Dawn. I have a very similar story to your son’s expect I found out at at older age. Read my story on my page if you like. I have an Avm about 3.6 cm in my L posterior as well. Mine is a grade 4. I found out while I was processing to be a Chicago Fire Fighter. I did not have a bleed though. After opinions from numerous neurosurgeons all over the country, I decided to have gamma knife treatment. My avm would affect my left leg and vision. If you live in a small town, you should really get opinions from top hospitals, which you did by going to Boston. Once your son gets his fmri done, you can send them to hospitals for opinions. I’ve had opinions given to me by sending the images. A lot of Drs will give free opinions. I would highly recommend getting an opinion from Dr. Lawton. He gave me one for free over the phone and is one of the top doctors for AVMs. Please feel free to message me at anytime.
What can we say? We understand how you guys feel, both from what you want your son to achieve in life and the simple fact that “discovery” is a shock, every time.
I think my main recommendations are
hang in there, discovery is a rollercoaster but it does settle down.
You need to find out about those other options, how big / complex it is, whether doing anything about it is necessary, sensible, etc. So make sure you’re getting advice that seems balanced and trustworthy: this is a specialist area, so as John says go to where the centres of excellence are.
Dont rush into action unless the doctors say urgency is important. Many people watch and wait for some time before taking action, so dont feel the need to rush unless the doctors tell you there is an urgent risk.
Its a tough time but you’ll all get through it and we are here to help as well.
Hi Dawn,
I recommend Dr. Solomon at Columbia in NYC for another opinion. Dr. Solomon and his team resected my son’s AVM. My son had a spontaneous rupture when he was 7 years old. Good luck to you and your little boy.
Michael Lawton MD at UCSF would be my first recommendation for consult. he does a lot of consult work and his department there in San Francisco probably deals with more of this type of AVM anyone in the country, and he personally has forgotten more in the last 10 minutes than most will ever know. He is the Guru. I’m sure they could recommend someone if you don’t like fog and rain.
Can say something that is likely of little comfort given everything you and your family have and are facing. But that was one lucky elbow job. The AVM may have been discovered in far worse circumstances. He has the ability now to take some precautions and treatment still isn’t off the table. We’ll be here with and for you Dawnn. and may say how lucky your son is to have YOU as a mom. Never met an RN that wasn’t tough as nails. Let ALONE a hockey mom RN, Thats just plain scary
Hi HockeyMom, glad you are here. Great advice from everyone on seeking the experts and a variety of opinions as you are aware being an RN. I’m from Canada and was considering heading to the Mayo Clinic in Rochester Minnesota for a consult but became really comfortable with my surgeons here. The reason I mention this is that in my research they were rated really well in the US, and as a bonus were fairly close to me. Might be worthwhile for you to look into, although a long way from home for you. I had a bleed and ultimately had gamma knife for my AVM in November of 2016, I was 48. I was fortunate to have options, however the risk with the craniotomy was very high to have some significant deficits(more than the gamma knife). I had no idea I had the AVM until it bleed. I think of some of the hockey games I was involved in over the years and am probably lucky I didn’t run in to some complications with it much earlier. All the best to you and your son, I’ll hope and pray that all goes well.
@John10 a while since I’ve seen you on here, great to hear you decided on gamma. I hope all is going well.
Hey @JD12 yeah it’s been a while since I been on here. I don’t really like the new layout, I think I just got to get used to it though. And yeah I opted for gamma knife at Northwestern. I have my 6 month MRI next week. My neurosurgeon is actually from Canada. He’s honestly one of the nicest person I’ve ever met. I hope nothing but the best for you!
We’ve all been where your son is in one form or another. My AVM (posterior medial right parietal lobe) was found by a stroke of luck after a head-on collision. And even then only after I got a second opinion of my MRI images at Barrows Neurological Institute about a mile from my home here in Phoenix. Longer story in my profile if you are interested.
This was in 1992 and I was twice your son’s age then and participating in Triathlons (to give you an idea of my fitness). Went under the knife on Thursday morning, woke up Saturday, went home Sunday. Doctors were amazed. So was I. Sadly this ended my racing days but I keep busy with other outdoor fun.
I’ll share with you what I’ve shared numerous times here, what got me through the entire ordeal: your son must adopt a stubborn, dogged, unwavering, determination and get in his mind that there is absolutely no other option, none, than getting better.
It took nearly two years to fully recover. I have an approximately 4-5% permanent deficit on my left side that I feel only very slightly when I write (I’m left-handed) and play the drums. Other than those all is well.
So, tell your son there’s long, healthy, active life after AVM surgery. There is no other option.