My 13 yo son have an avm

Hi everybody, we are from France, looking from help, advices … My son, 13 yo, had a seizure 3 weeks ago. After a scan they discovered a brain Avm on temporal left side, language zone. No bleeding. Since 3 weeks he is taking keppra and no more seizure. We are waiting for surgeons comments, actions … Thanks to share with us ours expériences about teenagers without bleeding Avm. Which treamtent ? Thanks you.

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@Arthur

Welcome to AVM survivors! These are frightening times but there are many people who have been where you and where your son are at the moment.

If you want to know about the different possible approaches to an AVM, there are usually four different approaches:

  1. Open surgery, a «craniotomy». While the idea of this is perhaps the most frightening, we live in an amazing time when it is assessed and undertaken with the greatest success these days.
  2. Endovascular catheter embolization. This is to insert a very fine tube (often at the groin) and navigate it to the AVM and block it off by filling it with glue, coils etc.
  3. Stereotactic radiotherapy. This is to zap it from the outside with radiation. For someone of your son’s age, this might more often be «cyberknife» rather than «gamma knife» radiation therapy.
  4. Sometimes, the risks associated with undertaking an operation are such that treatment is not recommended. When this is the case, the neurosurgeon may wait until someone has a bleed that has to be addressed, and we have to accept the damage that is done during surgery.

However, temporal lobe doesn’t sound likely to be in the latter case, so I am sure that the doctor will make a recommendation or two to you as to the approaches that could be taken.

I think you will find friends among us, whichever approach you are offered.

We all recognise that being @ParentsAndCarers is much harder than being the patient yourself. However we can help you, we will do.

Very best wishes to you both,

Richard

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Welcome, sorry to hear about your sons AVM. I had a left temporal AVM that bleed in 2016, I ended up having gamma knife due to its location as presented less risk than craniotomy. I was 48 at the time so quite different than a 13 yo.

Has your son had a angiogram, or is one being planned? It’s good that no bleed has happened, and you are able to look at options for treatment or monitoring. Take Care, John

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Dear Arthur, this is a terrible situation! My daughter, who will be 13 in October, has a AVM at the midbrain. Surgery is no option. We will do a cyberknife treatment, because just monitoring and watching her get worse/ have a bleed is too scary, despite the risks of treatment. I am sure there are excellent surgeons in France, if you need a second or third opinion you could ask at the Charité in Berlin.
Tell your son he is not alone in this situation, as you as his parents are not alone.
Take care
Anna

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Thanks you DickD

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Yes angiogram was done

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Bonjour Arthur,

Tous mon soutien dans cette épreuve. J’ai 28 ans, avec une MAV découverte à mes 23 ans. Elle a rompu il y a 10 mois maintenant, puis opérée et enlevée à la fondation rothschild à Paris. Si vous le souhaitez, nous pouvons entrer en contact par mp/téléphone pour répondre du mieux que je peux à vos questions du point de vue patient.

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Welcome to the family Arthur.

Sorry to hear the news about your son but just know there are many members here who can offer their thoughts & first hand experiences similar to yours… please keep us posted & rest assured being young will benefit him greatly in this case… sending prayers to you and your family at this time… God bless!

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Welcome @Arthur - I am so sorry to hear about your young son. Its no fun having seizures but Keppra meds work and it may take a bit to get the dosage correct. It can also make you tired. Thank goodness they found the avm and no bleeding.

Sounds like they did the angiogram and what my neuro radiologist who is from Standford told me it is his years of experience that guides him on what will work. I had medical glue and onyx on the first embolism. The second time they went in some how my body how sealed some on its own and the rest they decided to leave because it could possibly paralyze me if they touched that area and I had previously been paralyzed due to an earlier stroke.

Since my two strokes I suggest teaching everyone in the family some basic sign language like pain, hungry, Thirsty, mother, father, help, and the alphabet its really not that hard I taught myself when I was in 7th grade a long time ago reading the dictionary- and it came in handy when I had my second stroke.

This is a great support group. I have been both the patient and care giver and personally I think its more stressful to be the caregiver and esp of a younger person.

If you do find someone on here with a similar case with a teenager you might want to see if they want to chat for support. It can be so overwhelming to go through something like this as an adult I cant imagine going through it at 13.

hugs
Angela

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Since the end of july 2022 we have seen two differents teams. The first one propose 3 or 4 embolizations, the second one propose one embolization then surgery during a single hospitalisation … now it’s time for us to choose for our son … Have you got experiences of craniotomy outcomes without bleed before ?

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Yes, definitely.

These are the people who came first to mind but there are others. I forget whether Michael had a bleed initially.

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This is the other story that came to my mind as well…

These are just two examples that stick in my mind. There are plenty of good stories out there. However, there is always risk. I guess the main thing is that, whichever route you choose, either can have things go awry. Nobody can tell you that one way would have been better because nobody knows. And nobody can tell you that a route is risk-free because each have some risk.

Very best wishes,

Richard

@Bsmom @jasonlisa1837

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Dear @Arthur

I am very sorry your son and your family have gone through this situation. The good thing in my view is that you have options. I cannot render an opinion on embolization because I have no experience with it. I am however an AVM survivor that has had Craniotomy. I was diagnosed with an AVM on my right Cerebellum, grade 2. On June 6th, 2022, it was confirmed via an angiogram, and 3 small aneurysms in it. On June the 7th I had a Craniotomy performed at Cleveland Clinic Ohio, by Dr Mark Bain and his team. I was advised that I was also a candidate for Gamma Knife, but that it could take 4 years for it to work, and time was not my ally. I was also advised on risks on surgery, anywhere from 5 - 15% risks given statistics. Compared with a 6-8 % risk of bleed per year (was told that they suspect that AVM on the low sides of brains tend to bleed more often), compared over 4 years with GK 24 - 32% risks on probabilities. These probabilities are not exact science, but we used them to inform ourselves and better asses the decision.
Surgery went according to plan, and the risks of permanent deficiencies I would say was right. I was left with balancing and equilibrium difficulties for the first 8 weeks. With intense physical therapy I have come to feel almost as I did before. And now almost 4 months into it feel much better. We are going back to Cleveland Clinic Ohio Mid October for a follow up angiogram, and hope everything confirms well. I will keep you posted.
I do wish your Son and Family all the best. You will be in our prayers.

Best

Francisco

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I am really sorry to hear about your son. You are in a good place here with lots of supportive people.

My daughters unknown AVM ruptured in July. She was 9 years old. It was 10 days before her 10th birthday. She had to have life saving operations. Drain - to relieve the pressure and remove blood, embolization to make surgery safer and then a craniotomy to remove the AVM. She got through each one and has no obvious defecit. She is back in school and is pretty much as she was before it happened.

She does get tired more easily and has some stinging sensations at times on her head but other wise she is doing fabulous.

She is also on keppra as she presented with a seizure when rupture happened.

We have our first post angiogram at some point in October.

Kids are so very resilient and your neurologist will discuss the best possible treatment plan. They will also keep a close monitor of your son. As my doctor put it, he is much safer now as they will monitor him where as before it was not known about.

Best wishes to you and your son.

Sarah - Millie’s mum.

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Hi Arthur, Sorry your son is suffering. I had a bleed and 2 craniotomies when I was 14. It limited my activities and affected me emotionally. I never felt confident or good enough. I have had gran mal seizures ever since, supposedly from the scar tissue. That is 49 years ago.
I’ve been on every kind of anti-seizure med including Kepra. That drug was bad for me emotionally and made me aggressive. The only advice is to support him emotionally and encourage making friends. Best wishes, Greg

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Je suis désolé Arthur. As a parent it is so hard because there is nothing you can do. And the learning curve is so huge! Getting the right neurosurgeon is probably the most important…. Ask how much experience they have. My son was told to have it immediately here in Tasmania. He chose to go back to University in the USA. A second opinion there by Dr Marc Bain at the Cleveland clinic also said do it now…. But the doctor and facilities were a world apart. And my son felt comfortable with that doctor so I am sure that also impacted his recovery.

The stress of deciding is very difficult but everyone on this site will say if surgery is an option it is better than recovery from a rupture. I feel very blessed with everyone’s support on this site. I could not get my son or husband to look at it, but it gave me a great deal of support and an outlet with experienced people to talk to. I feel very blessed that our situation was relatively easy and that my son is now considered completely cured. 13 is still growing and elasticity is still good. Hopefully that will mean an easier recovery for your son. Just make sure you also deal with the stress for the whole family.

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Keppra made him sad …

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I had a big scar from ear to ear that embarrassed me, especially for the opposite sex. I still remember clearly the girl that invited me to my first party. I was very very grateful. I had gotten pudgy because I couldn’t exercise.
i’m just sharing my experiences at approx. same age as your son in hopes that they may help you. Greg

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@Arthur I personally have not had a craniotomy but I did go to the hospital to help support someone on here who had surgery with our number on neuro in the USA ; Dr Michael Lawton when he was at UCSF. The patient had his in the upper right frontal area and he said he felt no pain.
He had planned to just stay overnight in the hospital. He was alert and did not show any side effects.
Angela