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AVM Survivors Network

Questions to ask the Dr about craniotomy and choice between


#1

Hi,

My 11 years old son collapsed in August 2017 and we found out at that point that he had a AVM in the left part of his brain. It’s a grade 3 with one entry and one exit located close to/or in the sensorimotor.

He was speechless for 5 days and paralyzed on his right side for a month. After 46 days in the hospital and intensive rehab, is doing a lot better and just need to walk with a brace because he right feet is not totally back to normal.

Things drag long but in January 2018 he had a second angiogram and then the neurosurgeon ask for a fonctionnal MRI which was done in March.

We meet an embolization specialist last week and that will be an option for my son. Although, we find that the chance of success of that technic alone seems limited. She’s didn’t seem keen on cimbining with radiotherapy since he’s young.

We will meet the neurosurgeon tomorrow to discuss the possibility of a craniotomy to cure him. If it’s possible, we will have to choose between the options or even do both (embolization to help the surgery).

We know that every case is different but we would like to know if there’s some questions you asked or you wish you asked about craniotomy that we should know about to be able to have a proper discussion and then make the best decision for or son.

Also, we would like to know about your kids recovery from either embolization or craniotomy to have a certain idea on what to except, knowing again that each person reacts differently.

Thanks for you help


#2

Hello.
I’m so sorry that y’all are dealing with all of this. I know it is so hard. My son is 15 and will have a craniotomy in a week. Ugh, it gives me goosebumps whenever I say that.
We found his due to a sports injury.
Honestly, after looking at all of the options, a craniotomy was the only solution. His is on the right occipital parietal lobe.
At first,when it was discovered, they mentioned embolization and gamma knife. After reading about it, we decided a craniotomy was the route we wanted to take. I know it’s invasive but living knowing he could have a bleed wasn’t for us. He’s a big lacrosse player and I don’t think I could ever let him back on the field without it being removed.
Gamma knife can take years to be effective but sometimes people go that route.
You have to read and educate yourself on all options. It’s all scary because it’s our children. I’m so thankful that we found this group.
Everything has a risk so talk to his neurosurgeon. One feeder and one drainage is better than many from what I’ve heard.
Prayers and thoughts for you.
I’ll be posting pre and post craniotomy. I hope my story can help you.
Lisa


#3

So much depends on size and location in respect to treatment. When I was in the decision making process it was all about risk, and going the lowest risk route, which is easer said than done. Foe me it was craniotomy or gamma knife. Gamma knife was way less risk of side effects, but I have the risk of a re-bleed while it works(hopefully). I do have the option of craniotomy if it does bleed again and then will have to live with the anticipated deficits, that decision has been made.
Really difficult decisions to make for sure, and even more difficult for parents. There is a number of parents here, your children are lucky to have your love and support, take care, John/


#4

Thanks Lisa,

It’s good to share with parents that are going through the same thing even if we don’t wish that to any other parents since it’s hard to deal with.

My son is a football player (bleeding of AVM not related to a sport injury) so we have the same dilemma then you event if we aren’t sure, at this point, that he will be able to play in a competitive team again because of his right leg limitations.

I think that if the doctors would have been able to operated him when he bled, it would have been a lot easier for us to take that decision. When is was speechless and paralyzed, we would have done anything to give him back as much as a normal life that it was possible. His main doctor would have went for it but all the others specialists were telling him to wait because of the locations of the AVM, close to the mobility and speech area.

But after 8 months and the fact that Philippe been through so much pain and put so much efforts in rehab to get back on track, it’s hard to decide to think of the craniotomy option knowing he will suffer again and that there’s always risks that he could loose some functions again. At the same time, another bleed could be worst and I don’t feel to confident with the embolization on the long term for a the same reason as you.

I been reading papers and watching load of videos about the different technics but sometime I found it more confusing that anything. Because it’s a rare condition, the stats are so different from a study to another and what the doctors tell us in consultation. Plus, watching a craniotomy video is really scary.

I don’t know if you have the same problem but my husband don’t need much information to be confortable. He will listen to what doctors have to say and be ok with that and won’t prepared anything prior while I’m a data eater and need to get everything prepared in advance to fill I have a little bit of control in that crazy situation. It’s hard to close in that situation and it brings up frustration for both of us in the context that is already stressful.

Anyway, we will see what the neurosurgeon will have to say this afternoon.

I will definitely follow your son’s craniotomy post and will send you lots of positive vibes, energy and love to help your family going through that process.

Nadine


#5

HI JD12,

Because I’m french Canadian but receive cares in Ottawa by an africain English doctor (so 2 big accents ;)), I often get lost with medical terms.

If I understand correctly form the last appointment (which I will verify today), my son’s malformation is a left frontal parietal grade 2 or 3 (1 for size = 12 mm, 1 for eloquent and 1 for deep vein initially, but maybe not anymore which would be good).

When he bled, they couldn’t see properly if the AVM was really close or in the sensorimotor that control a part of the mobility and the speech and that why the didn’t operated at that time.

A bit like you, we could do embolization and keep surgery if it doesn’t work but my son already had learning challenge at school prior to the bleed and will have to redo his 5th grade because he’s so far behind now. We would like to avoid having to impact a second school year in a row.

Whatever intervention we choose, it should be done by the end of May or June.

Thank you for your support.


#6

Nadine,
This is a parent’s worst nightmare.
I am also a data junkie. I, as most, hadn’t never heard of an AVM and now it controls my life.
My son is an athlete and we sidelined him because we just couldn’t risk it. We decided within the first two weeks of discovery that he would undergo a craniotomy. Us, him,living with the chance of a bleed just scared us too much. We are among the lucky to have found it pre bleed.
Noah’s is located toward the outside of the occipital and parietal lobe so it’s in a good spot to go in and get it. We know it’s not a choice for everyone. There’s risk associated with it but there’s risk if you choose a different route. I just felt like this is my son and living, not knowing, is just too hard.
He wants to play sports and this is the only road back to that for us. There’s a chance of deficits but that’s with everything associated with an AVM.
I’m scared and very emotional. This group is my saving grace. I’ve met parents and survivors here that have helped me.
There’s another parent, her son had a craniotomy and had deficits, but now he’s 100%. He had to learn to walk again. Kids are resilient and that’s what we are praying for.
I question myself everyday. Is this the right choice?
Should we wait? In my heart of hearts, I know this is the path for us.
We are at his Pre-op now but I felt I needed to write you .
Prayers to y’all,
Lisa


#7

So kind of you. I confirm, kids rehabilitation is just amazing. Somebody suggest me that a took a lot of video and photos after he bled to follow the recovery. I created a 8 minutes movies and time to time we look at it just to remember how amazing he has been.

Best of luck to you all and I will be there for you too as I understand the emotional state you are in.


#8

Thank you.


#9

Nadine, no worries on the medical terms! I’m english and my doctors were english and I got lost, can’t imagine a language barrier also. I’m from Manitoba, lived in Ottawa as a child for 5 years and was recently there for a weekend. Love that city. Don’t be hesitant to lean on the folks here, lots of experience and lots in common. John.