Just found AVM on my 15 year old son

Sorry to sound illiterate at the end, I was using talk to text and talking fast!

Hello Lisa

Was your MD Dr Khalessi at ucsd in San Diego?
He was the doc that saved my life — AVM discovered just in time and was pretty complicated. Unfortunately post 2nd embolization I have vision loss of left eye as during procedure ophthalmic artery was compromised to save my life —

No actually it was Rene Sanchez Mejia at Scripps. He is featured a lot in San Diego. He just left Scripps for the Neurosurgical Medical Institute in SD. I know UCSD is great…my niece had 3 surgeries there to save her life from sinus cancer when she was 16. She is now 20

Lisa, mine was discovered at age 19. It is in the Rt. Occipital extending into the thalamus. Treatment for AVMs was in its infancy, 1979, and the Neurosurgeons wanted to do a craniotomy. I refused since they could not give me an outcome. I did have radiation treatments but they did not stop the growth. Jump forward 30 years and I needed treatments as it had grown in size. Johns Hopkins did 3 embolizations and gamma knife treatment. My Neurosurgeon also told me that if I had the surgery the outcome would not have been good, if I survived.
My point is please get the angiogram and ask for a copy of the disk. I don’t know where you live but try to get a second opinion. Many neurosurgeons think they know what they are doing but that is why some of them only do AVMs. Ask on this site for recommendations. Also ask your surgeon how many they have done etc.
I know you mentioned for your son not to use cold medication but that also includes pain relievers is. Aspirin and any others that may be a blood thinner.
If I can help please let me know and let your son know that once this is all over things can go back to what it was.

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Thank you for responding. I’m a wreck and ready to move forward with a craniotomy. He has his angiogram Wednesday and from there we will set up his appt… I feel like we are on borrowed time, only because we don’t know when it could rupture. I’m scared beyond measure.
How long did y’all wait before surgery after finding out?
How did y’all handle school? How long was he out of school? How long did his recovery take?
I know it’s a lot of questions and everyone is different but just curious.
Thank you for reaching out

Agreed, aspirin and ibuprofen would be a no no but “cold medication” can include a good dose of alcohol in liquid medication.

I also agree that a second opinion is wise.

Thank you for helping ease my anxiety a bit! I am not myself since the discovery. Thank goodness it was discovered but boy has my world changed.

Lisa,

You’re welcome.

If I’m honest, I’d really encourage you not to run headlong into surgery unless the doctor is telling you it is urgent and needs to be done quickly. Not all doctors have a wide experience with these things and diverse views can give different options. I’d ask about embolisation and gamma knife or proton therapy to see if your doctor has considered these and knows they are not appropriate, or whether he or she is unaware or a bit narrowly focussed on their own skills only. A neuro interventional radiologist would give you a view on those other procedures. Sometimes, the procedures are combined for best effect.

There are many good stories on here about all procedures, though all of them carry risks, some significant risks. So do make sure you and your son are comfortable about the option you want to go for.

Very best wishes

Richard

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I just want it gone. I’ve been doing lots of research and the neurosurgeon feels like get in and get out and be done. He feels like it’s a perfect spot to remove it. Years of worrying about this isn’t something I can do.
I just don’t know what to do or think.

Thank you! No one mentioned anything about cold medicines. He’s also on ADHD meds that I’m scared to give him. Everything is so fast. I’m writing this down to ask but def no blood thinning meds.

Hi Lisa,

Unless the specialists have said your sons AVM is urgent to have a Craniotomy ASAP and that you dont have time to consider all your options - I would advise not to rush this decision without looking for another neuro-vascular neurosurgeons opinion. Also consulting with experienced neuro radiologist specialised in the other treatment options for AVMs.

Every treatment option comes with risks - risk may vary between the differant options (which changes according to each persons unique case). You and your son want to be as best informed on all options as you can for your sons particular case and then decide on the best treatment plan from there.

I am talking as someone who has faced a perminent deficit resulting from the treatment for my AVM (I am now visually impaired). I have no regrets only because I have been told by several specialists this was the best option for me and there were no alternatives with lower risk in my case.

If the specialists told me I had a lower risk treatment plan even if it would have taken longer than the one I have been given - I would take it rather than have perminent brain damage I now have but that was not an option for me.

I totally understand the urgent feeling of wanting to get rid of the AVM asap. I felt the same way before, but now im happy to let my specialists take whatever time they need to investigate my next angiogram scans and access the least risky final treatment to elimiate the remaining of my AVM.

Best wishes and we are all here to support you,

Corrine

Thanks for reaching out. Of course, we all start researching AVM as soon as we learn the word. At first the neurosurgeon said he’d embolize it and do the gamma knife. I read about that and felt like because my son is a lacrosse player and wants to play in college, it needs to be removed.
Before going to see his neurosurgeon for a follow-up, I had already thought the craniotomy was really what needed to be done.
He feels like it’s on the outside and easy to get to so we should do the craniotomy and be done. It’s only been 2 weeks since discovery and I don’t know if my nerves can handle anymore.
Best wishes,
Lisa

Your only in the first couple weeks - its natural to feel on edge especially pre-angiogram results but it does get better, your son will have his angiogram soon which will give you lots more information and help loads in solidifying the best treatment plan :raised_hands:

I had to give up a year of university and graduating with my classmates for my treatment - I totally get not wanting to delay things and the frustration it gives :frowning:

It could be good to discuss whether embolisation preceding a craniotomy would reduce risk or not (I have read this to be the case for others but ofcourse dont know for your sons case)?

Also discussing with the neuro-radioligist and neurosurgeon - do they believe embolisation followed by gamma knife route and craniotomy route are equal in terms or risk or is one greater than the other? What are the risks for both routes and pros+cons for your sons case?

If embo+GK is safer do they believe your sons AVM would be reduced in size significantly when fully embolised - enough to be safe to play lacrosse whilst gamma knife works to eliminate the remaining AVM?

Asking about experience your neurosurgeon and neuroradiologist have with AVMs?

I am hoping after your neurosurgeon and neuro-radioligist has looked at the angiogram scans that they can confirm craniotomy is the safest or equally safe to embo and gamma knife route and you can get it all out the way!

I do completely agree If craniotomy was the safest or equally safe route and I had an experienced neurosurgeon with AVMs I would chose it too cause waiting isnt fun!

I will have my fingers and toes crossed for you both :crossed_fingers:

Cant think of anything else Id want to ask regarding treatment following the angiogram when they have all the details of the scan at hand.

Very best wishes and thinking of you both, sending all my positive energy your way :heart:

Yes it will. The angiogram will give the surgeons an excellent view of the AVM. Then you and they will be better informed and prepared to decide how to approach resecting it.

Like your son’s mine did not rupture. AND mine was asymptomatic. Was only found serendipitously after a car accident. Read my profile if you want more info on that.

There’s no benefit to worrying. You’re living in a time when surgeons, nurses, drugs and medical technology are so advanced. Also, that your son is young is a HUGE advantage! Stay strong and positive for him so his worrying is at a minimum.

Find the posts here that you think will make him feel most safe. Then have him read them.

My AVM was resected in 1993. From what you described his is not as severe as mine. I’m 57 now and still living a normal active life with lots of mountain biking, rock climbing, trail running, traveling, skiing and just about everything else outdoors.

Surgery is a bit south of pleasant. And recovery is no party. But patience is key to enduring it. Remind him of this. You and he must get into your minds that there’s no other option but getting back to where he is now. NONE! It helps to be stubborn like me.

We’ve all been where he is. And we’re here to help. Don’t hesitate to reach out.

Love to you and your family

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You can click on my avatar and read my story but I wouldn’t worry about the what ifs and the worst case scenarios; you’re lucky that your son’s AVM was found before it bled and it is in an accessible place so you have a lot of positives going for you so trust your doctors and just keep moving forward day by day!

I know it’s all so new to me but I feel like It will rupture any day. I’m just living in fear and emotion.
He’s operated on a few hundred AVMs. He has said that he would just go in without Embolisation.
After the angiogram, will we know if it’s stable or can they determine that?
Thanks for your time and prayers.

You’re so right. Fear has me right now. I’m ready for him to have surgery but scared to death of the surgery.
Thanks for answering my questions.
Lisa

Your post is one that I will let him read. You’re right! I should try not to let him see my fear and I do a pretty good job of it but I’m obsessed with finding information and sharing it. Only the positive.
Thanks for your kind words. I do hope soon that my anxiety will subside and I can relax a bit.

Hi Lisa,

Social media wasn’t around when I had my AVM. I literally had to go the the library down the street to get information. Then had a few consultations before deciding to have surgery.

You and your son are the fortunate recipients of modern technology that provides so much data at your fingertips. But don’t get overloaded with information and fixate on all that can go wrong. Brain surgery is scary and risky. But the surgeons, nurses and technology are all so advanced the likelihood of a negative outcome is very very low.

I’ll share this with you, true story: I told my surgeon that I’m a practical, cut-to-the-chase kind of guy. And I don’t need to have sunshine blown up my ass. So don’t worry about your bedside manner. Then I asked him, “am I going to die?” He responded, “yes you are, but not from this.”

Sending your love and positive healing waves. He’s going to be fine.

Keep me posted,

Bill

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Lisas,

I am so sorry this is all happening to your son and you and your family.

Thinking about it - your son has lived with this AVM all of his life, he has lived life to the fullest not being extra careful and playing sports without it ever rupturing.

Every day we all live with risk, every time we travel in a vehicle we risk a careless or drunk driver causing a car crash. Every time we cross the road we take risk.

Plenty of people live their whole lives with an AVM without a rupture and never are diagnosed. Plenty of people are diagnosed with dormant, low risk AVMs and live without symptoms or issues.

Once your son has the angiogram they will know how stable your sons AVM is when they analyse the scans. Your son is in the best hands possible, under the care of specialists who have studied many many years to do their jobs.

Right now by the fact they are taking an angiogram - they want to investigate further before deciding what is the best treatment option and to be sure of the level of risk associated with each option they offer you.

It is natural to panic when you dont have much information and to fear for the worst case scenario. But you already have so many promising things to focus on - your son is asymptomatic and hasnt shown any signs that his AVM has caused any issues with his brain, your son has had no ruptures, they haven’t seen any aneurysms in the MRI, your son is otherwise healthy and young making recovery from treatment better, specialists you have are experienced with AVMs and beleive your sons AVM is treatable.

You need to try to focus on these things and stay strong for your son - even if you think your not showing all this worry to your son, its hard to hide. I know this because when I was diagnosed last summer, my mum went into complete panic mode, I am her only daughter and I felt it even when she was trying to hide it. You living in fear will make him feel worse so staying positive and beleiving your son will be fine and you both will get through this is really important to give him positive energy and strength.

Also even with modern technology any surgery can have real life changing risks aswell as benefits. That is why it is essential to try to be as clear headed as possible to fully discuss the benefits and risks associated with each treatment option with your specialists once your son has had his angiogram and the specialists are able to give you all the information. You’ll feel better soon once there is a plan in place, not long to go :heart:

Corrine