Differing opinions for treatment of brain AVM

Symptoms & Treatment
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Hello all,

I am a new member of this community since my 10 year old son has recently been incidentally found to have a brain AVM after sustaining a concussion in March this year. It has been a shock to us to find ourselves on this journey but we do realize that we have been lucky to find out about his AVM before it ruptured or caused any serious issues. The only symptoms Luke has is occasional headaches, dizziness and recently says he sees “static dots” in his vision.

Luke is currently being treated at Cincinnati Children’s Hospital and so far he has had a MRI/MRA, Cerebral angiogram and a functional MRI performed. Based on these tests they have diagnosed a Right Parietal Occipital AVM, Grade IV (S2, E1, V1). The size of the nidus measures 4.2 x 4.7 cm with arterial supply from the superior and inferior MCA.

The current recommendation from the team at Cincinnati Children’s is that he start with staged radiosurgery. However, given the size of the AVM the discussion has been that there needs to be a combination of treatments that may include microsurgery or embolization in addition to radiosurgery. Our next clinic appointment in October will be to finalize the details and treatment plan from what I understand.

I have spent a lot of time reading on this forum since his diagnosis and have gained some valuable information. One thing that has been mentioned by others is to seek a second opinion. So after doing some research, I decided to seek a second opinion from Barrow Neurological Institute. I obtained the imaging CDs on the last visit to Cincinnati Children’s and sent it to BNI through their online second opinion program. We received a second opinion back from Dr. Michael Lawton and based on their review of the case they have said it appears to be a Spetzler Martin Grade 3 and Lawton Young Supplemental Grade 2. They also stated that based on Luke’s young age, they believe it is amenable to surgical resection but there is concern for damage to structures involving sensation and the visual system. Given this information, we are planning to make an appointment for an in person consultation with BNI to discuss further.

With two options that seem to differ in the best course of action, my question is for anyone who has been in this position. Did you discuss the second opinion with the first neurosurgeon before making your decision? I have full trust in the team at Cincinnati and I value their opinion and if we decide to start with radiosurgery then we would want to stay there for treatment. So I guess I am concerned that it may damage the relationship if we mention that we are searching for other opinions.

Any advice is appreciated.

Thanks!

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Hi Brandi. Welcome. Sorry to hear about your son’s AVM. I don’t think a second opinion is uncommon & probably recommended. My son had occipital AVM @ age 12. The resection is hopeful to be a permanent fix (10 yrs. later, my son remains AVM free). Continue to do your research & ask questions. Best wishes to him and your family.

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Brandi, this is a tough situation to be in for sure. Great on doing the in person with BNI, they are extremely well respected, particularly well known is Dr. Lawton. Cincinnati Children’s is also extremely respected. I think it will come down to your comfort level with the surgeon and risk over the long term that is presented vs. risk associated to craniotomy due to location but immediate resection. I have said yo many, we often don’t know if we made the right decision until much later, but to be at peace with the decision at the time. A second opinion, assessing options, looking at associated risk and being at ease withe the care providers are what we can control. Take Care, John

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Hey @Brandi3,
I’m Merl from the Modsupport Team here on Bens Friends.
My situation is a little different in that I don’t have an avm, but rather a growth which has required a few neurosurgeries to manage it. And, unfortunately, yes I have been in that position with differing opinions from differing neurologists/neurosurgeons. Everything from ‘chop it out’ to ‘wait’n’watch’.

For me, (and I recommend this for EVERYBODY) I had to work it all out for myself and where I was at. I’d been symptomatic for a long time, so the wait’n’watch was not an option for me. in my view “Wait for WHAT?” things were bad enough, waiting was only going to make it worse. It seems this ‘thing’ is right in the centre of my brain, so they couldn’t say how much damage the ‘Cut it out’ theory would do, but it could be significant I was told. So, I chose to have a reduction of the mass. I had the surgery, but things didn’t improve and I went searching for a 2nd (3rd and 4th) opinion. I wanted to know, what were my options.

Upon doing so I had a few 'Ohh, I wouldnt have done THAT…" type comments, but it did give me a fuller type of picture of my options and upon returning to my surgeon I had more information to be able to ask questions. Now, I must admit, the surgeon was less than impressed that I’d gone seeking a 2nd opinion, but he did (eventually) understand why. He also explained why he decided on his approach vs a differing opinion, which helped my acceptance a bit more.

Merl from the Modsupport Team

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I am 38 years old with exactly same AVM. I found out about the AVM after I had a seizure in 2020. My son was only few months old. it was a devastating experience for me. I consulted with neurosurgery, radiology. One team said they can do radiation therapy and resection of AVM but there can be lot of effects on vision, senses. if I don’t do it, it can cause brain bleed at any time. 2nd opinion team said to observe because its spread in large area. So, I decided to watch it for now. For me I felt that I am not having any major symptoms right now but with surgery there will be damage to brain. I did not feel like it was worth the risk to have surgery and radiation therapy done. But it’s just me. talk to your family, your partner and then make a decision. I am taking keppra 500 twice a day for seizures. no Seizure episode so far. Sometimes I have headaches, I am taking cymbalta for that. I just had a repeat angiogram done few days ago and was told that my AVM got a little smaller. I am positive that it will get smaller and clot with time.
Good luck in whatever decision you make. best wishes to you and your family.

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@Brandi3

Welcome properly to AVM survivors!

What are my thoughts on this?

1, this is the first time I’ve heard of the Lawton Young Supplemental scale, so I’ve looked it up. If you’re interested to know what either scale is about, I found this article. It’s long and complicated but, for me, it sets out much more information about Spetzler Martin grade 3 and grade 4 brain AVMs than I’ve known before. As far as I’m concerned, I take this as difficult reading. I guess I’ve understood grade 3, 4, 5 as less good outcomes / less likely to have a trouble free outcome but the document helps to understand this in more detail.

If you need any help reading and understanding this stuff, do ask. My simple reading of it is basically “grade 4 is not good; sometimes grade 3 can be as difficult / poor outcome as grade 4, so we want to segregate that on the supplemental scale; and the supplemental scale gives a nice indicator for Luke being under 20 but you’ve discovered it before it bled”: interestingly, discovering post bleed moves things around a bit and sometimes makes surgery less invasive.

Like I say, hard reading.

2, I completely understand your concern about spoiling the relationship with the team you already know. Personally, I have a couple of views:

2a. We’ve already read that this is not a straightforward operation. Therefore, getting a second opinion is only the right thing to do. Surely anyone with a right mind would agree that this is not a grade 1, nicely on the surface thing. No, it’s complex, second opinion is simply wise.

2b. I can tell you that I’ve read stories on here of neurosurgeons getting uppity at people getting a second opinion. Maybe they are focused on their income more than they are on the patient outcomes. Or, they think they’re the bees knees and can’t contemplate someone else being more right than them. Either case, why would you choose the uppity surgeon? The focus has to be on the possible approaches, the risks and benefits to Luke, nobody else, nobody’s income, nobody’s sense of self worth.

Obviously, if it’s a 50:50 decision at the end of all of the consultations – both equal – you’re going to choose local over going to Arizona, aren’t you, so the local guys are ahead a little already.

I think that’s enough from me. There’s always the possibility that at some point somebody says “Hmm, let’s not do anything at this point”, so consider that that might be a possibility. But if it was me, I’d get the in-person second opinion. We have Dr Lawton down as the best of the best and BNI the same, so why wouldn’t you ask?

I hope this helps! Take it as honest opinion, nothing stronger than that.

Richard

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Hi Amy, @Amy_B Hi Amy, Thank you for sharing your thoughts. I am so glad to hear that your son was able to have a resection and is doing well now! I do feel that a resection would be the best option if they say it can be done and the benefit outweighs the risk. At times it feels like an impossible to decision to make. But I know it has to be made. I just want to make the right choice and it is so difficult to figure out what that is. I am hopeful that Barrow will give us some more insight related to his AVM that can help us navigate the options and make the right choice. Thank you again for the advice. I really appreciate it!

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@JD12 Hello John, Thank you for your response! I am hopeful that we will get some great information from BNI. I am so thankful to have found out about them from this group. I have read the stories from others on here and also read articles about Dr. Lawton. His reputation is stellar. I think when we see him and get his recommendation it will help us feel more at peace with whatever choice we make. It feels impossible to have to make this choice for our child not knowing if it will be the right one. But I will keep reading and seeking information until it is time. Thank you so much!

@ModSupport Hi Merl, Thank you for your response! It is so hard to make these choices. The one thing everyone has agreed on so far is that it does need to be treated. We have been told we can wait and watch but we do not feel terribly comfortable with that option. Like you said “wait for WHAT?”. Then if something terrible happens we are regretting not doing anything at all. He has had some symptoms already and I just don’t think we should wait for things to get worse or possibly have a bleed. I am glad you were able to discuss and reach a level of acceptance with your surgeon. I am finding out it can be so difficult to navigate these things and try to hear what they are telling us as well as figure out what they are not telling us at the same time. Best Wishes to you!

@Johal Thank you for sharing your experience! I am sorry that you are going through this too. It is very devastating and scary. I feel like we are on a roller coaster ride in a nightmare right now. I am trying to stay positive and learn everything I can about all the options offered. That’s great that the AVM has gotten smaller. I hope you continue to stay seizure free and wish you and your family all the best!

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@DickD

Thank you for the warm welcome to this group! It has been so helpful and I appreciate all that you are doing to support this group.

I would like to respond to what you have said.

  1. I was not familiar with the supplemental scale either and I do want to research it more before we go in person. I have printed the article you referenced and it seems to have some excellent information. I do believe it will help me understand better the significance of the supplemental score. I look forward to reading the rest of it to gain more insight. Thank you for linking this!

2a. Thank you for your support and encouragement on looking for a second opinion. It seems like an easy thing to say you should get a second opinion, but I didn’t know where to go. It’s like you just want to go to the best place and have someone tell you what you should do and that be the only option. Having choices just seems overwhelming in this situation. Like I have said, it seems like an impossible choice to make, but it has to be made.

2b. You are absolutely right about this! Our goal is to do what best for Luke and if we feel someone does not have his best interest as priority #1 then we do not need to continue with that person. So far, we definitely have not felt that way and everyone has been fantastic. I think I tend to overthink these things and get in my head about possible situations before they happen.

I do feel like getting this second opinion is the right thing to do at this time. I feel like seeing someone like Dr. Lawton will only be beneficial for us in order to move forward with making this impossible decision feel a little more possible. If they agree with the team we have now then I think we will feel more able to accept the decision and live with the outcome, good or bad.

Again, I am so thankful for finding this group. It has helped tremendously.

Thank you Richard! I appreciate your honest opinions!

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I am so sorry to hear about your son… as a father of a 10 year old also by the name of Luke, this post really hit home!

I would mention you had a second opinion but make it very clear you are not fishing for other advice with any intent to insult anyones profession, but simply want whats best for your child… most will understand that.

As a child it is difficult when it comes to AVM’s as they do say they can return due to their young age, so it is imperative you get the best advice you feel comfortable with and feel is best for your son and your family.

Sending prayers your way and please keep us posted on Luke’s journey… God bless!

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Hi Brandi, I would recommend a 2nd opinion and I’m sure it won’t damage any relationship. I’m surprised they didn’t recommend one. I have a grade 3 left occipital/parietal with my 1st opinion from Mayo and 2nd from Barrow. Mayo recommended Cyberknife and Barrow said they could cut it out but there was a possibility of severe complications including loss balance issues, loss of speech and vision. No Thanks! Went with Mayo for Cyberknife which resulted in it shrinking. It hasn’t disappeared and it is 9 years later. I am on a couple different medications for seizures and still have one about once a year due to lots of stress. Thanks for sharing about the dots Luke seeing in his vision . I’ve never heard of anyone else having those and I’ve never known how to explain them. Are they kind of like clear floating orbs? out of the side vision? How does he explain them? Thanks for sharing and best wishing for you and your family!!

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@Brandi3
Hello
What does Luke want to happen? I get that he is only 10 and you need to do the research for him but he’s going to live with your decision.
I’d get the 2nd opinion and then discuss with Luke who he feels best with. Then discuss with those doctors and go ahead if you’re all ok with it.
Rejecting treatment is a pathway with many pitfalls but equally operating has many risks.
The USA is a very different environment to UK

Best wishes
Tim

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Hi Brandi3!
Thought I’d chime in. My son had a ruptured AVM last summer. He was then 16 (17 now). I wish we would have known or had some symptoms before his rupture. He spent his entire 16 summer in the hospital and acute rehabilitation. Like your son, his was in his occipital lobe. He did have a very successful resection surgery almost exactly a year ago at Children’s Inova in Fairfax, VA. He is still working through his deficiencies from the hydrocephalus that occurred, but his surgery did not impair or interrupt his recovery. He did have significant left field of vision loss, but completed nine months of outpatient OT. He worked very hard to regain some sight and even passed on OT led driver rehab program and obtained his drivers license. We were thrilled. An interesting experience for Henry’s surgery is he did not feel any pain. Ever. We went home four days later and he did remarkably. We felt we had no option other than surgery. We saw what a rupture did to him and we never wanted this to happen again. Additionally, the resection was well planned out and scheduled with reputable neurosurgeons vs. an emergent situation. I know you had a hard choice to make. I just wanted to offer our experience. Our sons rupture has changed our family’s life. Luckily with a few bumps in the road, we’ve been able to pull together vs. fall apart. Good luck to you. Please reach out if you have any specific questions that I might be able to help with.
Beth

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@Adrian1 Thank you for your response. I think you are probably right to say that they would understand us looking for a second opinion. Honestly, I am wondering if they would be relieved to hear that we have made attempts to get other opinions. That way, if we make the decision go with radiation it will be based on all the information gained from all opinions. It really makes sense to do it that way for a rare complex issue like this. Thank you for the prayers and I will post updates as we travel this road.

@jjsbabies Thank you for sharing your experience. I understand the fear of severe complications. That is something I want to discuss with them when we see them in person. Luke describes the dots like static “small white or colored dots” that he mostly notices when he is trying to focus on something. He called it “rainbow static” and told the optometrist that he thinks he sees them in both eyes but could not be sure. It is really interesting to hear that you have experienced this as well. The neurosurgeon sent him to ophthalmology for visual fields testing which was normal. Everyone so far has just said they were not sure what is causing it, but I suspect it is related to altered blood flow in the occipital lobe since the visual system is located there. Best wishes to you!

@Timb Luke has said he wants surgery from the beginning. He says he just wants it out and he was disappointed when we told him that he may have to have radiation instead. I think that, naturally, he wants a quick fix but he also doesn’t have the maturity level to understand the gravity or consequences of these decisions. Thank you for sharing your thoughts.

@BethD I am so sorry that you guys have been through this. I am sure that seeing your son go through such an experience would be terrifying and I am so glad to hear he was able to have successful resection after the rupture. I hope he continues to make a good progress in his recovery. Thank you for sharing your experience and perspective. I am thankful that we have discovered this incidentally and have an opportunity to treat it now. Best wishes to you and your family!

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Something to consider: Each rupture comes with a 30% chance of death. I could not wait to have my AVM removed. I think the chance of a subsequent rupture is increased compared to the 3-4% per year that a rupture normally is probable.

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David,

While your doctor may have given you a 30% chance of dying, it may vary from person to person, largely driven by exactly where in your brain the AVM is (and how deep it is). Other people will be given different figures. I know some people who’ve been given a 10% chance of “Something bad happening, including death” during the operation and there may be situations where the odds get quite close to each other, so it is very difficult to know when or whether to operate is a good idea. It very much has to be down to the patient (and/or their parents) to make the very difficult call as to which way to go.

I don’t think everyone gets the same figures given to them. I’m sure it varies according to the circumstances.

Best wishes,

Richard

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My Neurosurgeon was a real Goob with numbers so that 30% figure comes from a study i found on arxiv.org. I forget the title

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A tad late, but

I personally vouch for BNI - of course everyone’s case is different, let alone someone so young

They treated my AVM back in 2020 & I am back at it thanks to them.

Dr Lawton just looked over my info & my embolization procedure was completed by Philippe Albuquerque

I was quite fortunate I suppose to have made it to 39 when I had my hemorrhage. They believed my dAVF to be congenital.

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