I’m a nervous wreck. We met with the neurosurgeon and he feels a craniotomy is the procedure we need to take. It’s on his right occipital on the outside. I know I’d rather it just be removed altogether. We are waiting on an angiogram. Does anyone know if that will give us more information about severity?
welcome to the site!
yes the angiogram will give them a better idea of the size and how the AVM is drained and fed; just feel fortunate that you caught it before it ruptured!
yes since it’s on the outside it should be easier to remove because that’s where mine was located and they could access it better and remove it without going deep into my brain.
the neuro surgeon will know more after the angio. stay strong!
First of all welcome to our community!
You will find plenty of support and shared experiences here to help you through this difficult time
Angiogram will give the specialists the best detailed scans to find out the exact location, the size, details of the vessels feeding and leaving the AVM and the blood flow within the AVM. Using this information the specialists can determine what the best step of action is moving forward.
I have a deeply positioned AVM in my left occipital lobe diagnosed May 17 - my parents were also nervous wrecks and very scared and I was 22 yo (now 23)!
I agree with @Mike5 that it is positive news your sons AVM is on the outside of the brain too! And that your son was diagnosed by accident rather than due to his AVM.
Feel free to ask us any questions and reach out for support here, we are all here for you.
Best of wishes,
Thanks y’all! I appreciate y’alls response. I have so many questions and feel like I’m so lost right now.
My son plays lacrosse and the neurosurgeon told him he could continue to play. I know his neurosurgeon is on top of things. Im just so nervous about everything now. When he sneezes, I panic.
Did y’all’s bleed? Did ya’ll have any symptoms? Everyone keeps telling me that it probably won’t bleed because there’s a 2% chance but how do I know he’s not in the 2% that will.
How was your surgery Mike? How long did it take? Help me be more informed.
Just received his angiogram date for next Wednesday. So nervous and scared.
Any information is appreciated.
Yes in any one year a person with a brain AVM has a 2% chance of it bleeding; I was 50 years oldwhen mine ruptured so I guess I was at 100%.
My craniotomy to remove my AVM took about 4hours they said, it was my second craniotomy in 3 months as I had one after mine ruptured. I was in the hospital for about two weeks after the surgery before I was released.
as long as you don’t have any complications during the surgery you can probably expect the same time in the hospital.
I played lacrosse in college, and have a kid with an AVM that has bled. I think your kid’s doc is nuts for allowing him to play lacrosse. You need to do all you can to avoid a bleed, esp. because it sounds like his AVM is easy to treat with surgery. I remember how important each football and lacrosse season was to me as a kid, but, each hit can cause some neuronal shear, which you simply do not want on an AVM because the vessels are weak.
I’m not a wuss, and in fact let my kid play flag football with his AVM. Heck I was the coach. Being a southerner, I believe in football. But a contact sport - no way. Let me give you an anecdote - professional MMA fighter with many UFC fights named Thiago Alves had a pre-fight MRI which found an AVM. He had it cut out, and got back to fighting. Your kid will be fine for the rest of his life and can do whatever he wants if his AVM is cut out. But if he has a bleed in the interim - he’s screwed. I don’t like telling people what to do, but if it was my kid - no contact sports until the AVM is gone. It’s just not worth the risk IMO.
I know your fear and your anxiety. My 16 year old son, Matthew was diagnosed with an AVM last September. I am scared for him, I can’t fix this for him the way a mom wants too, I can’t take this away like a mom wants too. I feel like I failed in someway. But I know this is all normal feelings. But I have to think on how he is feeling. How his identical twin, Alex is feeling about this. How is Dad feeling about this. But most of all I think of how the twins are feeling.
The angiogram was in November, and then another MRI to slice the AVM down even more to get the total size. We followed up in December and then today. We are moving forward with surgery in June, right after his 17th birthday.
I see how their friends treat Matthew. They are very protective of him, but make sure that he is included and make sure that his is able to things that would include contact sports such as air soft wars. They are in the marching band and the new drum major (which is a good friend of theirs) sent Matthew a card stating she will take care of anyone that gives him a hard time. And that she was there for him if he needed anything. Moving into August, I know that Matthew not only has his twin brother, to help during band camp but also the Drum Major Emily, this so far has me at ease a bit more.
The only things our Endo Vascular surgeon told Matthew, that he can’t do is, take cold meds., get stressed out and take recreational drugs (which he does not). His twin brother had gotten the flu this year and I prayed Matthew, did not get it due to needing cold meds the doctors put Alex on. Thankfully, so far we are good with no colds and flu for Matthew.
The angiogram was a breeze over all for Matthew. He was under anesthesia for that and came home and relaxed and had the couch to himself. Other than Grandma stressing him out, and with holding food from him until I put my foot down. But that’s another story.
Prayers for your son and remember he is young and will bounce back just fine…Or so we were told today.
lisa, I agree with db20 until that AVM is resected I would stay away from contact Sports and anything that might increase his blood pressure; he might have some issues from the surgery but he’ll have a whole mess of problems if that AVM ruptures.
not trying to scare you but mine ruptured and it caused a lot more problems than if they caught it earlier and resected it before it bled!
I felt the same way. Everything I’ve read said “No Contact sports.” We asked another neurosurgeon that we know and he agreed that he could. I’m in shock. We don’t feel like it’s safe and we are the parents. When I tell my son that he can’t play, of course, he says that the experts said he could. It’s so hard cuz I love him so much but his life is my concern now. Thank you for your response. It helps confirm my suspicions.
How did y’all find out that he has an AVM? Did they think it was safe to wait for the surgery? We found his on March 3 and I’m ready to have the surgery now. I’m a nervous wreck but I manage to keep it together in front of him and my other son.
Where is your son’s located? Does he have symptoms?
We were told no restrictions. It’s so confusing how different surgeons view the do’s and don’ts.
It’s so terrifying.
What kind of neurological damage did you have, if any, and did it all heal and return to normal?
He has his angiogram next Wednesday.
I’m so nervous and scared. I’m just trying to hold it together. I’m so glad we know and can do something, hopefully, before it’s ruptures.
I’m so glad I found this group.
I can understand your position being a parent and not wanting your child to do anything that can harm him. My parents were the same way before and after craniotomy surgery was done. I was age 10 when it happened to me back in 2000. It was hard for me because like your son was into sports a lot.
Patti8 here, I am new to this site and grateful. I am 73 and just discovered the AVM one month ago. My AVM is quite large and in the posterior left parietal. I became aware only because I had an episode of weakness on my right side arm and leg. I thought I was having a stroke and took aspirin it lasted 10 plus minutes then over. Long story short, I will have an angiogram and wondering the risk? Is it a risk of a stroke? I am very nervous and mostly scared! Any input would be greatly appreciated! thank you all
I am happy to meet all of you.
I’m new here too! Thank goodness I found this forum. It’s a scary mess! I wish I could tell you something but I’m learning and learning that potential stokes surround AVMs. Good luck and hopefully we will learn everything we need to learn here.
You’ve got a great response from a wide group of people here, so there’s not much I can add. Is your son showing any symptoms from his AVM or are you acting on it because it just happened to be discovered? My own view is that where it has been discovered without any symptoms, the risk of a rupture any time soon is lower. If he’s got headaches or visual disturbances or can hear a pulse and any of that is getting worse over time, then you clearly want to deal with it sooner rather than later.
To share a bit of my story, my AVM is in the dura mater layer over my right occipital. I could hear a pulse in October 2015. In April 2016 it was loud enough to me to think I needed to see the doc about it. It took until August 2016 to see an ENT man, October to see a neuro and April 2017 when I actually got to have an embolisation. In the UK, at least, you’re not urgent unless you’ve got some significant symptoms going on, so that was as prompt as they were prepared to be for me.
Meanwhile, if you want to manage his risk, keep his blood pressure in a sensible place, so no coffee (no caffeine) no chocolate, no smoking (if he does), no lifting heavy weights and as someone else said (and I loved it) “go easy on the toilet” (no straining) will ensure he doesn’t put pressure on it.
I agree that significant sports are probably unwise but it is important to stay active as inactivity can put up the blood pressure.
The other thing I’d say is tell people about his condition. If he ever has a bleed, if people around him recognise what’s going on, they’ll get the help he needs. If people don’t know, they’ll just think he’s acting strange or take longer to decide there’s an issue. No need to shout it from the rooftop but it is useful to have a few people who he spends his day with knowing he has an issue.
Welcome to the site. I hope you feel you can ask anything you need,
Rather than diverting Lisas conversation, feel free to start your own thread (look for the blue +Topic button on the home page or in a category) and ask any questions you need.
Very best wishes
No, my son has not had any symptoms. It was an accidental discovery but I’m terrified and ready to have it removed. I can’t imagine waiting for something to happen.
We will have an angiogram next Wednesday. Then the following Tuesday we will meet with his neurosurgeon and discuss what comes next. I’m scared to death of waiting.
He’s an athlete but just today we pulled him from his team. His neuro said it was fine to play but I just can’t add to the risk.
Thank you for your time.
Lisas, I understand your fears and concerns! My AVM was huge and was on the occipital and temporal lobes of my brain. It was only found because I had a massive brain hemorrhage when I was 43 (15 years ago)… I had three embolizations and a craniotomy. The great news is your son’s AVM hasn’t ruptured and it’s operable. That’s WONDERFUL NEWS!!! The angiogram will give the doctor a clear view of the AVM so the Brain Surgeon can effectively plan for the surgery. I can tell you that my experience with the angiogram was a piece of cake. It went very well and my surgeons gained a lot of valuable information that made my three embolizations and my craniotomy much safer and very precise. I send my best wishes to your son and your family!
As an incidental finding, I don’t know that you should worry so much. They reckon about 1 in 1000 people have an AVM but since symptoms are rarer, only 14 people per million are detected each year. I made it to 50 before mine showed itself.
So… listen to the doc about the risks specific for your son (rather than these general statistics) but I hope you can relax a bit more waiting for next steps.
All the best,
Hi Lisa! I am Lisa S. too! We have so many similarities besides our name and last initial, I felt compelled to write to you. Last year when my son was 16 years old, we found he had an AVM by chance during an MRI for migraines, which turned out to be unrelated. His was in the right SMA portion of the brain. My son’s was in his brain and went a little deep but it was I believe 3 cm, but I could be off on that. My son was a baseball pitcher for his high school team and just starting his sophomore season of JV baseball. We met with the top vascular neurosurgeon in San Diego where we live. He was one of the best and trained the top AVM facilities in this country. He gave us two options of a craniotomy or gamma knife radiation. We all felt the craniotomy would be best and to just get it out and be done. He went in February 14th of last year for the embolization, stayed in ICU that night and had the craniotomy the next day. I was a complete wreck and basket case. After the surgery he had some Paralysis on the left side due to something called SMA syndrome. He had to stay in the hospital for a week and a half and then another week in Inpatient Rehab. He relearned to walk. We did a couple months of outpatient rehab. The surgery was a complete success and I’m happy to tell you that my son is now completely normal healed AVM is gone and he is pitching for his high school team again. Please try and stay strong I know how horrible it is it sounds as though your son’s is in a better operable spot. You can message me anytime also you can text me at (… number deleted…) if you just need to talk to somebody who’s been in about the exact same circumstances and is now on the other side. I found other Avia mom by chance in my local community Through People I knew and they supported me when I was going crazy and I needed to talk to people who have been through it. I’m serious you can contact me anytime I know the horde feeling and the worry is a mom. I’d love to show you a picture of my son today he old and pitching so you know your son will be there too!