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AVM Survivors Network

My 10 year old son diagnosed with right Periatrial AVM


#1

Hi. My 10 year old son was just diagnosed with AVM in brain on July 25, 2017. He was just released from hospital and neurosurgeon recommended another angiogram then gama knife procedure in about 4 weeks. I live in Long Island, NY… Please help us… we are trying to get a second opinion. Any and all recommendation would be greatly appreciated.


#2

Steph,

Welcome to the forum!

A second opinion is a good idea to see that you get a consistent story. Not all AVMs need treatment, not all AVMs are safe to treat and our experience here suggests that gamma knife is not complication-free, so it’s important to make your own judgement, based on the risks of leaving it alone v the risks associated with an intervention.

Does he have any symptoms from his AVM, or has it been discovered “by accident”?

There are a few current conversations from people going through, completed, or contemplating gamma knife, so you can read different views on those in very recent posts. But, remember, we won’t tell you what to do – we mustn’t – but we can share our own experience or material we’ve read.

Welcome! I hope we can help you through this a bit!

Very best wishes

Richard


#3

He had hematoma from sports injury and we found out when CT scan was performed on July 25th. No symptoms due to AVM. I am just learning about AVM… I am so worried… just got all medical records and CDs of all testing from hospital in NY. I am trying to find a pediatric neurosurgeon to help us…


#4

If it hasn’t presented any symptoms, another doctor may advise you to just keep an eye on it, but it depends on many factors.

Good luck! We do have listings of doctors, which my be of help: scroll down the home page.

Richard


#5

Thank you very much.


#6

I sorry to hear of your son’s diagnosis. I know this is very difficult news. It becomes easier to accept over time, although right now it consumes your thoughts all but the three hours you are able to sleep at night.

In my case I spoke with eight different physicians. It helps that I work at a hospital but four of them were at other hospitals. The neurosurgeon recommended surgery, the interventional radiologist embolization, one surgeon discussed the option of leaving it and provided me the study.

In short, physicians may recommend a course of treatment basted on what they know, their specialty. I opted for Gamma Knife at Cleveland Clinic. It was done by a radiation oncologist and a neuro surgeon.

After gathering all this information my wife and I felt that GK would be best at this stage. We made it a matter of prayer seeking confirmation. I do believe in personal revelation and that everyone is entitled to an answer as it says in James 1:5.

Prayer doesn’t make things go away, it provides direction, which is a type of comfort.

I wish you well as you start on this journey.

Mike


#7

Steph,

Another thought… unless the doctors tell you it is urgent, don’t feel the need to rush into treatment of any kind. If they tell you it is urgent, then it’s urgent but if it hasn’t been giving him any problems, you have time to make decisions.

Statistically, I’ve read that 1 in 1000 people have an AVM but only 14 people per million are diagnosed every year. Therefore, the vast majority of people live their full life without their AVM being an issue. You know about it because of a scan for something else.

So… don’t feel pressured into this. Get good advice from the doctors – ones that you trust (which may well be the ones you’ve already seen) and then weigh up the right choice, best you can.

Best wishes,

Richard


#8

Hi Steph,

I totally agree with the comments that say don’t rush if there are yet no symptoms being presented.

I am 53 years old and two days ago I had a successful gamma knife treatment. My AVM never bled. Located towards the back of the brain on the left side - (sulcal small left occipital AVM with no parenchymal changes in keeping with no bleeding history). Located not far from the visual areas. They also found a small intra-nidal aneurysm. My AVM was just less than 3cm and graded between 1-2.

The only reason I had mine removed was I started getting headaches and electric shocks behind the left eye and insisted on a scan which led to further investigation. I took 6 months of research, deliberation and speaking to experts before I made my decision.

Get as much information as you can and find an expert you feel you can really trust. I had too much information and it is the trust in that expert you feel has your interest at heart and knows you and your child that is going to guide you best.

Good luck.

Regards
Alphonso


#9

Thank you so much for your advise…I started sleeping in his room since we got home from hospital … I know I need to think straight and look out for him but am so lost and scared… I wake up every 2-3 hours to check on him… I feel sick in my stomach… I took off time from work and signed him out from summer program… canceled all his sports camp for the rest of the summer… I am not sure what to do… Jusr sent out all his CT scans and MRIs to Boston Pediatric hospital for a second opinion… just waiting to hear back … how do I explain all this to 10 year old child…


#10

Steph,

Honestly, nothing has changed. He is the same boy he was. The key thing now is that you know he has a slightly different risk level on some things than other people. Getting to see an AVM specialist will mean that they will tell you if his risk is high enough to do something about.

Cutting out coffee, chocolate, serious sport is a sensible plan but he needs to exercise and enjoy life and I do think you are worrying too much if you’ve moved into his room. Really. I completely understand it but this can be a very long journey and you need to get the right sleep and relax about it as much as you can.

Other things you could prepare for… do you know what stroke symptoms look like? The key thing is to know how he might be if it does decide to bite and to call 911.

Quick question… I assume he has a parietal AVM rather than “periatrial”. The latter means “around the heart”, not in his brain.

Do try to relax, best you can.

Richard


#11

Hey Steph, I’m really sorry your kid got this diagnosis. I am concerned that you aren’t getting good advice on this forum. People are trying to minimize concern, which is meant to be kind, but you have to make a decision based on reality. The moderator told you that your kid is the same kid he was before the diagnosis, which is true, but the reality is your kid has only a 29% of not having a hemorrhage before he’s 40. The odds that he makes it to 65 without a bleed are 16%. (These numbers are based on a 4% risk of annual bleed - I can explain the math if you want).

The reality is if you can get rid of your kid’s AVM with minimal risk of side effects, you are giving your kid a chance at a normal life. If not, the odds are very high he eventually will have a stroke. He will also have to explain his condition to any girl he wants to marry if you all don’t treat it. The idea of “watching” an AVM is a little silly IMO - when AVMs bleed is often hard to predict.

Talk to multiple doctors. If the AVM is in a non-eloquent area and is small enough you can do gamma knife in one session, and have a 90% chance of success with minimal risk of side effects. Gamma knife itself is easy - no recovery time, your kid will be running around the next day once all the anesthesia wears off. If the one session doesn’t do it, the procedure can be repeated. Using the above assumption (one-stage gamma knife), the odds that the AVM would remain after two treatments is 1% (odds of failure of two procedures: .1 x .1 = .01). In other words, your trade off sounds like either choose a very high likelihood of stroke eventually, or a high likelihood of obliterating the AVM. Not rocket science IMO.

This gets more complicated if the AVM is very large, located in an eloquent area, and/or drains deeply vs. superficially. These are questions to ask your doc. But from what you wrote, it seems like one-session gamma knife is the recommendation.

Best wishes, sorry to be so stark. But as parents we have to deal in reality if we want to do our job at the level our kids deserve.


#13

Hi. I used to always be around this site. I am 67 but the AVM showed up when I was 9’ and I also lived on LI. The AVM showed up by bleeding and I had a craniotomy. I am ok, still here. Thankful for that. The surgery was done in Mineola at old Nassau Hospital, now known as Winthrop, apparent a very big place. I know everything is different, the same doctors are gone, but I thought seeing a person live after almost 60 years with a condition your son has now, and in the same area (right occipital/parietal) could give you hope.
beans


#14

Hi Steph, its great you’re here. My son just turned 12 yesterday, spent the day returning from a vacation so not much of a party! Luckily in my house it is me with the AVM. I have a grade II AVM in the left temporal and have had gamma knife approaching 9 months ago, which was about 6 months after my bleed and discovering I had an AVM. I was 48 at the time, and came out of it well no significant side effects thus far. I met someone on holidays who also has an AVM in the left temporal, grade I, the recommendation to her was monitor, which was not a consideration given my circumstances. We had a great conversation. I think this is a long way of saying, do your research, seek second and third opinions or more if available. Listen to what others have gone through, it is all information available and in my mind vital to making the best decisions. I’ll be thinking of your son and you, take care.


#15

Thank you all… I’m just so thankful that he doesn’t need to take keppra as of today… I am just waiting to hear back from neurosurgeons from BosTon Pediatric and Columbia hospital as we prepare for gamma knife procedure by cohen children’s hospital in 4 weeks. I was not able to tell my son that he has AVM grade 3 in his brain yet… We just told him that he has a weak brain blood vessels… I just didn’t want him to look up information online and get scared… Not sure if I made a right decision.


#16

Hi, Steph. I moved back to LI when I had a stroke after having lived down south for many years. After my third neurologist, and no diagnosis, I called the Neurological Institute at NY Presbyterian-Columbia in upper Manhattan. They immediately saw a malformation and ordered an angiogram, which showed the AVM. This was my experience so I wanted to give you another option if you haven’t heard of them yet. Best of luck to you, your son and your family. I’ll keep you in my thoughts.


#17

Hi Steph
My daughter (15 now) AVM (on her right frontal lobe) was discovered incidentally in Dec 2015 when we do a CT scan after she complained of double vision / seeing double images.

The AVM is abt 3cm.
We consulted a 5-6 doctors, 3 of which are in the field of treating AVMs. Of these, only 1 is affirmative about surgery, 3 (of which 1 is a known specialist in ACM) recommends no surgery at all, 1 has reservation but may consider surgery if it calls for it (e.g., stroke or bleeding occurs). The last is non-commital as it’s not his special area of expertise.

We also consulted the specialist for embolization but as success is 50/50, he didn’t recommend it too.

A major reason for the difference in opinions is there’s an important vessel near the site of her AVM which, if damaged, will result in (immediate?) paralysis.

Other than experiencing constant headaches (which my daughter said started from when she was 6 years old, [Somehow despite her telling us (which she claimed she did), we did not take notice of it. ] she did not display any symptoms.

As she’s deemed asymptomatic, and in view of the risks and not uncertainties involved, we decided to adopt a “watch” attitude.

My purpose of mentioning the docs is to tell you (as someone had mentioned earlier), the docs can only recommend based on their areas of specialities and observations. Ultimately, as parents, we need to help the kids make well informed decision.

So, after consulting the docs and doing your own research, do spend time to assess the different proposals, ask questions and then make a well-informed decision.

Hopes it helps you in your decision making.
Daryl


#18

There is so much more can be done w/helping the AVM survivors now. Way back in 1990, I got my brain surgeries done by Dr. Robert Spetzler in Phoenix, Arizona at the Barrow Neurological Institute. He might be retired by now, but you never know.
Good luck, and may God be with you all!
Lisa A. Stuckel


#19

Hi Steph,
I was also 10 when my brain AVM (right frontal lobe) was found because it bled. I have had the Gamma Knife surgery twice…first time was six months post-bleed, and then again just over five years later to treat two very small areas (each only 0.5 mm by 2 mm). Between Gamma Knife surgeries, my doctor did want to try embolization through an angiogram but the vein did not feed directly to the AVM area, which was why I had the Gamma Knife again.
All the best.
-Julia


#20

Dear Steph - My 9 year old daughter was DX in March 2017 with an AVM. Her’s is on the larger side and located in the thalamus region of the brain. She did have symptoms, mainly deficits with fine and gross motor functions, but also some headaches. Her symptoms led to her diagnoses and she has never had a bleed or stroke. We were told she was not a candidate for open surgery, but possibly for radiation. You are on the right track with Columbia and Boston. We sent them our disks too. We also met w/ Stamford and decided on gamma knife in Pittsburgh at UPMC with Dr. Lunsford. We also considered doing nothing as the fear of radiation side effects were a real source of apprehension. I can tell you that the decision making process about what to do is the hardest part. What you are going through now, was by far, the most difficult and anxiety arousing portion of this whole process. Once you decide what to do, things will get easier and your fear and anxiety will be greatly reduced. There was a time when it seemed like there was no right answer, but I can tell you that the day my daughter had gamma knife and I knew she was okay, I felt like I had won the world series. It was a true sense of accomplishment. I knew I did what I could and I also knew there was nothing more I could do. We agonized about what to do, but there was a consensus among the doctors that she was a good candidate for radiation and we were given optimistic statistical outcomes, for both obliteration of the AVM and her risk for side effects. That made our decision much easier. Once we knew we were going for radiation (proton was not an option) we struggled between cyberknife and gamma knife, (one difference is a frame or no frame). We also obsessed over the neurosurgeon’s experience and the equipment they would be using. Other considerations with a larger AVM are multi staged procedures as well as the dose of radiation they would using. Finally, you have to decide what to tell a 10 years old kid. He is still young, but old enough to demand answers. We told our daughter she has a ‘little blood vessel’ in a place that it shouldn’t be. We explained gamma knife as a type of powerful xray that would ‘zap’ the blood vessel over time and it wouldn’t hurt. We told her she would have a needle and would have anesthesia. We said the anesthesia was necessary so that she didn’t move. We never told her about the frame or the angiogram. She did really well - once she got over the nausea from anesthesia, she felt great. She insisted we take her to the cheesecake factory for dinner the same night as her gamma knife! We told her the two little band aides on her forehead were from a device used to keep her head from moving. She had no real marks or scars from the pin sites. Lots of white lies told to get us through the procedure and maybe being honest would have been better, but in our case I doubt it. She was very scared by the little she knew, so for us, right or wrong, limiting what she knew was the only way we could see getting through the procedure. Cyberknife and gamma knife are very similar, but gamma requires a frame with 4 pin sites to keep it fixed during the procedure. We can see why cyberknife is easily preferred, but the data suggested gamma could be slightly more accurate. My daughter never knew about the pin sites and she recovered nicely. The procedure was on May 17, 2017. She recently started getting slight occasional headaches, but they are very manageable w/ either tylenol or peppermint oil (peppermint oil on her forehead works wonders!). Things are very much closer to normal now. I worry, but not nearly as much. Her activities have been altered and the adjustment to all the changes has been hard at times, but overall she is great. The odds are, my daughter will be fine. I take true solace in knowing that more then likely she will be fine. I wish I could eliminate her risk completely and immediately, but I can’t. I stay on the bright side all the time. I wish you and your son the very best. I am always available to talk or write back. P.S. I highly recommend Dr. Lunsford at UPMC -
look him up! Hang in there - Jill


#21

Hi ya my names cassie I’m from England so I can’t recommend any doctors from ny but my daughter who is also 10 has a brain Avm which bleed 2 years ago she had gamma knife treatment last year and all is well so far we get results next month if there has been any change x x