My 14yo son was recently diagnosed. 4.5cm, left occipital

Hello and I’m so relieved to have found this group!

An MRI for migraines on Nov 12 revealed the large AVM in my son’s left occipital lobe. Angiogram 2 days ago revealed size is 4.5cm. Information gathering is maintaining my sanity. (So far :grimacing:)

I’m going to explore this site more and will welcome any info provided. We hail from Erie, Pennsylvania, btw, traveling to Children’s Hospital of Pittsburgh for treatment.

5 Likes

Welcome, and I have to use a line that I do often. Its great you found us, but too bad you needed to! You will find a ton of experience here, and hopefully can help you and your son on this journey. It is fortunate it was found in the way it was. Mine was discovered due to a bleed. The resiliency of kids is amazing so certainly in his favour, although we all seem to struggle a bit with patience.

My neurosurgeon here was formerly in Pittsburg,(not childrens) but left a number of years ago as he was recruited to return home. He is outstanding so I would assume it is consistent throughout there! I Hope we are able to pass along some helpful information and experiences. Take Care, John.

4 Likes

Hi

Sorry to hear of the news.

Im only pitching in here due to the similarities as mine was found originally by an mri to check for certain things Inc headache as well and wasn’t expecting any vascular problems

Mine is also occipital lobe

I had an angiogram that confirmed it needed surgery and I had an apparent successful embolisation

Going back for check up soon but it’s amazing what they can do these days

Best of luck :slight_smile:

3 Likes

Dear HMC, I was diagnosed with my AVM 3 months before I turned 14. Unfortunately there wasn’t this thing called the “internet” at least not for average people, so we never made much in terms of connections. Simplest way to say it is 1978, 1986-87, 2009, 2018. Been a long road.

I don’t know that I can offer much in terms of insight for how to navigate treatment but I have a close friend who has one of her adopted kids (same orphanage as ours) comes to CHOP as she calls it. He had a double lung transplant and is now dealing with other nasty things I can’t even comprehend. She told me once that she and Glenn figured it out and one of them and their son spend on average 5 to 6 months a year at Pitt. I don’t think she would know much about an AVM, but if you need answers about anything regarding to CHOP or Pittsburgh, she would either know or know where to find it. If you’d like the contact info, let me know and I’ll run it past her and get the info to you.

TJ

2 Likes

Welcome to the family & sorry to hear about your son… please feel free to ask our members for anything you may want to ask as I’m sure they can help one way or another… God bless!

6 Likes

I had exactly the same. Happy to answer any questions you have. I had both craniotomy and gamma knife in 2014.

4 Likes

Good morning! So glad to hear they found it before it ruptured. My right occipital was undiagnosed until it ruptured. I was quite a bit older than your son (like 40 years)… lol. But, the point was I recovered from the craniotomy with minimal lasting issues. Hoping his can be treated without surgery. Good luck, and I’m always available for questions.

Barb

3 Likes

I was 16 when my AVM ruptured. I had youth on my side as does your son. Mine was in a different location. We are here for you. whatever you need.

3 Likes

I wish you and your son the best. This is both scary for the victim as well as the caretaker. There is plenty of hope though and this is a great resource that you have found. Some context for me: I was suffering from frequent migraines in the spring of 2016. I also had a CAT scan and subsequent MRIs that found I had and AVM in my left occipital lobe. Mine was roughly 7 cm. The decision was made to perform a craniotomy and removal. Everything went according to plan as set by a very skilled neurosurgical team. A lot can happen of course, but the prospect of being free of the potential catastrophic outcome in my situation was worth the surgery. I am grateful that my team was well prepared and educated on exactly how to go about helping me. I guess I just share this so that you can take comfort in a similar scenario with a positive outcome. I have full function of my abilities. The only lasting effect is I do have near weekly headaches but very few are as severe as what I had previous to the surgery. Good luck to you both.

4 Likes

As a mother, I sometimes wonder who it’s harder on- the parent or the child.
My daughter’s avm is in another location, and according to everyone we’ve spoken to it’s inoperable, but thankfully she’s ok and life goes on.
When my daughter was initially treated it was at barrows in Arizona. They’re really considering the leaders in avm treatment. We also conferred with drs in Boston, chop as well as mmmmm I’m blanking, somewhere in NYC.
We’re here if you ever need support

4 Likes

I have an AVM of similar size in my temporal lobe. I had a bleeding back in 2011 when I was 22 years old, and I had episodes of migraine before that.

I have doctors (one of which was Dr. Duke Samson who was renowned in this area) who recommended to not operate on it even though it had bled before, because the AVM location is deep and the risk of a major hemorrhage is relatively small because it’s a “high flow low pressure” AVM.

But after another episode of bleeding in 2015 another team of doctors recommended to treat it. I had two embolization procedures and a proton therapy by Dr. Patel and Dr. Chapman in MGH since then. I’m still waiting on the effect proton therapy to fully develop. In the meanwhile I did have another bleeding in 2019. Thankfully I have fully recovered in all three instances.

All the doctors I’ve seen always tell me I don’t need to rush to decide on my treatments. I had plenty of time to research on my treatment options. Sounds like your son hasn’t have an AVM rupture, so his risk is even lower. Also my first doctor cited a clinical trial (ARUBA) that concluded unruptured AVMs should not be operated surgically. I hope that’ll make you feel better :slight_smile:

2 Likes

Welcome. Sorry to hear about your son. My son also had AVM in occipital lobe @ age 12. We waited 6 long months letting the brain heal from initial trauma. He had embolization followed a few days later with craniotomy. He’s 20, now. He has lost peripheral vision & has something called Homonymous hemianopsia. He is able to drive & a junior, in college. Otherwise healthy, he still has MRI’s every year to make sure it hasn’t grown back. We are fortunate to have excellent neurosurgeon @ children’s hospital Los Angeles. I wish you all the best. Learn all you can. Children are very resilient. Prayers for your family.

3 Likes

Hey there! Mom of a 13 yr old son who’s left parietal/occipital AVM has been deemed obliterated! It was a long journey, but we got there.

Please feel free to reach out if I can help with any questions, or if you just need for someone to listen. We are just outside of Charleston SC, Medical University of SC was are go to place.

Much love and strength as you tackle this hurdle
Amy

4 Likes

Thanks for the welcome, John. And we are ‘lucky’ to have found it this way vs a bleed! (Though it doesn’t feel lucky to have it at all.) Many positives in our situation, for sure!
Heather

1 Like

Thanks, TJ. We have been really happy with CHOP. For sure. Following an angiogram, the treatment plan was changed to 3 embolizations @ 2 weeks apart to clog up the feeders, followed by the craniotomy. It will make that final surgery much safer.

So you were 14, like my son. My current struggle is figuring out how to talk about advance directives, in case the worst happens during surgery. How’s your recollection from age 14? Did you think about what would happen if everything suddenly went south?

Heather

Thanks, Jade. Same spot? No rupture? We’ve discovered his is bigger, 5.5cm. He’s going to have 3 embolizations prior to the removal, to make that surgery safer.

We’ve been told there is %100 chance he will lose some of his right field of vision. Did this happen for you?

Heather

Thanks, Barb. I’m so glad to hear yours turned out well!

Wow! Yours was even bigger. I’m sorry to hear you still have headaches, as getting rid of those is the #1 motivator for my son. Did you lose any vision? That will happen here, for sure.

Do you remember anything that was particularly helpful in recovery?

Thank you! I pray for you and your daughter that all continues to go well.
I have family in both Boston and Philly, so was grateful that those locations were viable alternatives if we ever felt CHOP wasn’t the right fit. But we have felt supremely comfortable with the doctors we’re working with so all is good there.

My current struggle is figuring out how to talk to my son about advance directive stuff. What does he want if things suddenly go sideways? Have you talked with your daughter about this?

Heather

Thanks for your insight. At first I was a little taken aback when our neurosurgeon jumped right to removal vs talking about gamma or embolization. Then the doctor who performed the angiogram discovered it’s bigger than the MRI revealed, and there is already 1 additional aneurism site developing on a feeder because of the high pressure. So the risk of a bleed is high. I haven’t studied ARUBA in depth, but we now have first scheduled 3 embolizations to block the 3 major feeders, followed by removal. At least so far I’m not doubting the need for removal…

1 Like