Surgery? Or wait and see?

So the last 2 weeks have been crazy. My son (20) had an MRI for headaches. He was diagnosed unexpectedly with a small (2cm) AVM in his R-cerebellum with a 1mm aneurysm. He has no symptoms and the headaches were on the wrong side of his head so appear to be unrelated. He was about to return to the USA for year 3 University, he plays div 2 soccer and heads the ball a lot (was also rowing/crew).

Choice #1
He is thinking that maybe he should go back, play the season and then have surgery in May over his summer break.
Choice #2
Defer University for a term and Operate now. The surgeon will do it next week if he wants. (This comes with a lot of headaches…classes can’t be done as he won’t have the previous term class, visa may need to be reapplied for etc).

He is a straight A student and was invited to the masters program in his first year, he runs the financial investing club at his school (and yes they give him real money). He also works for their IT department as well as a research company doing AI for medical diagnosis (how ironic). He is very worried the operation will damage his ability to communicate and or affect his coordination/reasoning. How urgent is it? He’s lived his whole life so far without even knowing…… medical management seems possible but what is it? Also where he is in the USA is NOT where you want to have an emergency. Are medical flights to good clinics possible (it’s about 1-1 1/2 hours drive to a really good facility)? The surgeons here both say operate now (one neuro the other a cerebrovascular interventionist) as it is in a good spot and should be relatively straight forward (Lol! We’re talking brain surgery)! They are good and we trust them. But can it wait?

Hey Bsmom,
Sorry to hear of your son’s situation.

That’s really only a question a neurosurgeon can answer and even then there is every likelihood that if you asked 2 differing neuros you’ll get 2 differing answers. Some may say ‘Treat it now…’ others may say ‘It’s safe enough to leave…’ The location of the annie, although small, and it’s relationship to the AVM both need to be taken into consideration. This is something only a fully qualified neuro can advise on. But if you have two surgeons saying ‘Act now’, I’d say ‘Do it’ especially if you trust the Dr.

Presently, in the U.S. the COVID story does not look good with the hospital system reportedly near breaking point. If, heaven forbid, something occurs and your son needs medical attention over there, then what happens?? Having a ‘Known Condition’, can your son still obtain health insurance? I ask this because when I travelled the insurer said ’ Yeeaa sure, we’ll cover you for everything EXCEPT your head…’ BUT be warned, he could slip, break his leg and them say he lost his balance due to his head and therefore null and void the claim. I queried the insurer saying 'what if it’s got absolutely nothing to do with my head…?" And their response “We’ve got a team of lawyers who will fight it”.

I’m in Adelaide and have required a few neurosurgeries. None of them have been fun. I do not know how I would have coped had I not had a family support system around me. Some people can be lucky enough to bounce back really quickly, but for others that recovery has taken quite a bit longer. Often the recovery process is not as straight forward as we may wish. There will be ebbs and flows in the recovery, some good days, some bad days and some OMG days and those are the days when supports were a must. Does your son have those sorts of supports in the U.S.??

Neuro symptoms do not play by the rules. ie when you hurt your arm, it affects your arm. 6-8 weeks later your arm is all healed. But when it’s your head it can affect EVERYTHING and 6-8 months later, it can still be affecting EVERYTHING. The brain itself has no pain receptors, so his headaches not being on the same side does not specifically mean no issue. I had all sorts of sensory issues ie whooshing in my ears, light flashes in my vision etc that were all minimised. Then one day I’m driving down the road and the lights went out, I couldn’t see. This made the dr’s investigate a bit more and I was rushed in for surgery.

Now, please, do not take what I’ve said above as being ‘Normal’ as I’m sure many would say I’m far, far from normal :rofl:, but I would recommend you look at it all from a worst case scenario point of view. We all hope/wish/pray it never happens, but ‘What if…?’ If you plan for the ‘Worst case scenario’ and it doesn’t occur, that’s a bonus. But if you don’t have a plan and the ‘Worst case scenario’ occurs it can REALLY knock you off your feet.

Hope it helps
Merl from the Modsupport Team

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Thanks Merl. Right now it just feels like an impossible choice for a 20 year old kid. And we respect that it is his choice. Insurance in the US shouldn’t a problem (lol not that they make it easy when you need it!) as he already has ii but we are checking that out. The biggest issue is if something serious happens because getting a good doctor is a problem. And the best doctor/hospital is in another state (another reason insurance may not cover it). Not like here. Even with private medical it’s expensive but you are guaranteed to get treated and have a choice. We do realise that preemptive surgery is far better than having a bleed. And definitely the support is here at home. And you are right Covid adds another layer to the mix. Luckily he is up north and they seem very covid aware. (His University fully vaccinated everyone last year. And it is mandatory that new staff and students are vaccinated). Unfortunately his is not a medical Uni! Right now we are all just in shock. Every time a decision seems to be ok something else pops up to make you rethink it.

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@Bsmom

It’s good to hear the fuller story. If it helps, I think the clue is in your local neurosurgeons’ views that getting on with it is the right thing to do. As Merl says, they’re the only ones who understand the details of what can be seen.

I’d find out if it is possible to extend B’s leave from university more than one semester if needed. I think @corrine discovered her AVM part way through university and had a more challenging recovery than initially thought but was able to lay off university for a while and restart (I think).

In terms of encouraging you, we all recognise the life-shaking nature of these discoveries. It takes a bit of rationalising with ourselves and getting used to the idea that a new course in the road has suddenly opened up.

The main question I had was regarding taking the risk of leaving it alone versus the risk of operating (because operating isn’t a risk free process, as we know) but I was convinced my AVM needed intervention, so I went for it. Having done so (and part of my rationalising with myself) I felt that the capabilities of doctors to do this kind of work is the best it has ever been. To discover an AVM this year is way better than discovering one 10 or 20 years ago. You’re in as good hands as there has ever been.

Very best wishes to all of you,

Richard

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Hey “Mom”

First off, congratulations - it sounds like you have raised a wonderful son. Pretty impressive…

Secondly, there isn’t anything that either of the wise guys (and I mean that in a respectful but slightly teasing way) said that I would disagree with. As I read both of them, I found myself either agreeing or saying, “I didn’t know that…”

Third, I don’t know where your son goes to University, but I would strongly recommend that you consider contacting Mayo Clinic for a 2nd Opinion. Go to Mayo’s website, their Rochester Minnesota facilities and then you should be able to find the “form” that you’d fill out to get a second opinion. It walks you through getting copies of records sent to them electronically and set up a phone conversation to discuss things with them. Once you have talked with them, it should give you more wisdom, insights or patience as you move forward, and as the plan hopefully becomes more clear.

Does that make sense? If you have any other questions, feel free to reach out and ask…

TJ

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Hey, I am Marcel and I was in a similar situation half a year ago. I got my diagnosis in October 2020.
I am 19, similar to your son.I too, had a cerebellar AVM with a similar size that did not yet rupture but showed symptoms.
I am sorry for the huge chunk that I wrote below, I hope it helps!

I am not a doctor, nor a certified professional in this particular regard, but I have dug deep into the literature and had a similar starting position that your son is in now.

General information I gathered: (out of memory, I do not have all studies at hand, but I can send you some to verify if my statements are accurate)
When it comes to risks regarding AVMs in the brain, many studies seperate the “cerebrum” (upper, big brain) and the “Posterior Fossa” (brainstem & cerebellum) [<- what we are concerened about]
The annual risk of a bleed is often cited in articles to be 2-3 or 1-4% and that is true, but mostly for AVMs in the cerebrum, not in the P.F… Bleeding in the cerebellum or brainstem is about twice as likely with some citing 4-6% annualy. Not only that, but the chance of finding a pfAVM that has not yet ruptured (as it is the case with your son and me) can be as low as 8-20%, the rest gets found with a dangerous hemorrhage.
What I am trying to get across is that you are (as was I) in a very privileged situation. The odds of a hemorrage are high, but you are in a unique situation to get ahead of this desease. Intervention regarding unruptured Cerebral AVMs is under debate, but most neurosurgeons agree that intervention of posterior fossa AVMs (especially cerebellar) tends to have a good success rate with good outcomes and is generally standard practice. The high chance of hemorrhage is also a key factor that validates agressive treatment. But I may not need to tell you all this, since it seems that both of you are in favour of surgery, just the timing is giving you your dilemma.
Brainsurgery can be scary, but I would hope that you dont look at it as a hurdle to his success, but rather a chance. Cerebellum can recover blisteringly fast and it may be weeks, and for some months, to regain almost 100%. It is almost certain that your son will lose time as a result, but he will gain health simultaniously and this damn desease will not bother him after the recovery is complete. Due to the pandemic, my most recent chance to operate was in late February. In my experience the most time that I lost was the time leading up to the operation, as my symptoms grew stronger and I could not excercise, while living under the stress of the diagnosis. I wanted it done as soon as possible. I cannot give you advice regarding the things your son will potentially miss out on, as I am from germany and very unfamiliar with your system and institutions. What I can say tho, is that I have also lost oportunities because of my operation, but I have encoutered a lot of goodwill and obligingness when I told them the reason why I missed out.

I also want to adress questiones you mentioned, I will give them a try but take them with a grain of salt:
Q: Will communication/reasoning get compromised?
A: Probably not. The Cerebellum is mainly responsible for balance and coordination of movement. There is a part in the deep cerebellum that controls facial muscles and it could happen that a side might sag and speech may even be slurred for a short while (not permanant with rehabilitation, no worries). That should not really interfere with communication and especially higher brain functions. There is some inconclusive speculation that the cerebellum has influence of concentration, however these differences are hard to measure. In other words, he will most probably not loose any relevant higher brain function nor cognitive ability. He will not lose his intelligence.

Possible symptoms however can be:
Gait Ataxia (balance problems while walking [like a drunk person] but very treatable and almost cureable with rehab, and good results after a short period of time (4-10 weeks [my experience, and I had a big emergency operation]) especially in his (and my) age.
Nystagmus (eyes rotate from on side to another, to counter a rotation that does not exist [awkward, but goes away in a couple of days])
dizziness
vertigo
All these are generally temporary or can be mitigated very efficiently.

You posed additional questiones:
Q: They are good and we trust them. But can we wait?
A: You can of course, but if they are good and you trust them, there is not much reason to wait :wink:
And if they say that its a good spot that is a VERY good sign that they are confident about a good outcome.
Q: Medical management, what is it?
A: Well “Management” in AVM treatment usually means wait and watch what happens. (Occasional MRI scans to see any changes.) But while they can see aneurisms and bloating vessels, predicting a rupture is almost impossible, and that is bad, since a bleed in the cerebellum can turn this convenient AVM into a difficult and life-threatening one.
I really dont want to scare or push you into a choice, but I really need to emphesize, that your son is the perfect patient to operate on right now, however, should he get a bleed, wich could happen anytime. His chance at a good outcome or mere survival will be drastically deminished. Only about half survive that sort of hemorrhage.
He is a busy and obviously very intelligent man, I would be surprised if his ventues will become less in the coming years. You can postpone his operation to give him time and space to pursue his activities and hobbies, and that is fine, but the ‘right time’ may never come. He has a bright future ahead and an operation can clear his path. Deciding to postpone the operation in an effort to save his carrer and social life is totally understandable and under the right circumstances reasonable, but please be aware, that he himself is at stake.

Part of what can make this desease bizzar, is that people are at greatest risk, when the sun shines the brightest and their health seems pristine, but when I got out of the operating room and I looked the worst and weakest, I cried because that was the exact moment that I was truely cured for the first time in my life.

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Hi. Thank you. He wants the op just not now. My worry is the US health care…. How much will it cover? Will they airlift him to Cleveland clinic (that’s the closest)? Do they have time? So many unknowns…… and he has had an MRI result, diagnosis and angiogram all within a week! School starts Aug 26, he was supposed to be there on the 12th…. We live in Tasmania (Australia) and it takes over 40 hours to get to school. And that’s if the flight to Sydney isn’t canceled a lot are atm). He wants to go back, I want him to stay. It’s his choice so we were planning to get all the info sent to Cleveland clinic and get a medic alert bracelet. Time is the problem and such an unknown……

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Thanks. We know he’s lucky to be ahead of this. It was accidentally found and he has no symptoms. Which makes it even harder. I think it has all happened so fast that he just can’t wrap his head around it…hence wants to wait until summer holidays and his 10 week break. Unfortunately Uni for him starts next week. We’re in Tasmania he studies in the eastern USA… alot will come down to the medical coverage (if he can get a straight answer from them).

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Hi, that sure is a tricky situation, expecially with the difficult insurance enviourment in the US. I really hope that your son finds a slot in time that fits his operation and recovery conveniantly, just as I hope that his surgery will get covered (ideally completely). (Should he wait for intervention a bit longer, I can give you two short advices that may help in an emergency. The bracelet is a good start, it can also help to look for stroke units in the area where he always is, as time is a big factor when it comes to hemorrhages.
2. It may be recommendable for him to avoid excercise that increases blood-pressure in the head considerably [lifting heavy weights] that was an advice I got from my neurologist]).
Ten weeks vacation sounds like a good opportunity and enough time, when everything goes well. I am afraid that I cannot give a lot of advice regarding this issue, but I sincerely hope for all the best! Best of luck and health to your son! :heart:

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Hi. Thanks so much. We hadn’t thought about a stroke clinic that is close to him. Great idea. He is going to try to get an appointment/second opinion with the specialist at Cleveland clinic. That way if anything happens he and all his scans will already be on file. Looks like his insurance over there will possibly be far cheaper out of pocket than getting it done here (although here is still the plan). Thanks so much for your advice. It really helps.

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Agree with the previous post to check with your neurosurgeon and get 2nd and 3rd opinions.

That said, and not to scare you, as a mother of a 19 year old who’s AVM was unknown until it ruptured causing full right side paralysis, memory loss, a craniotomy and two cranioplasties - I can’t implore you enough to truly assess what the doctors say. A soccer season and lapsed semester would be a dream come true my son would trade in a heart beat.

Best of luck and praying for you both.

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Hi,I was diagnosed with a large Pelvic AVM and a 3cm aneurysm on Jan 10-2007 I declined surgery because the risks where to high. Everyone has choices in life and sometimes they can be very difficult. I’ve been fine living a great life just can’t overly exert myself
Do hope you the best
Take care

Hi. Thank you Chris. Your words are comforting. It is such a hard choice. The operation is as risky or more so as leaving it alone atm. So, Yes he has decided to delay surgery. He is planning on getting a second opinion in the USA (where the doctor sees hundreds of these every year). I am still scared to death especially as the repercussions of a bleed are huge! And the restrictions on overseas travel make things all the more difficult (for me mostly).

Thank you. Yes he has decided to delay surgery and get a second opinion.

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I hope the 2nd opinion brings you the clarity you need. Best of luck and prayers for you both.

Hi there. I wish I had seen your message earlier but here goes for what it’s worth.
As mentioned by the commenter from Germany, your son has been given an amazing gift to know about this AVM prior to rupture. AVMs in the posterior fossa (cerebellum/brain stem) don’t often present symptoms before rupture. When they do rupture the bleed can be catastrophic because it’s a very tight location and the bleed causes damage of the immediate tissues and compression of the surrounding tissues. Compression of the brain stem means the very most basic functions of life like heartbeat and breathing can be affected within minutes.

My daughter had an AVM in the exact location you describe—cerebellum, right side—but we had no clue until it ruptured out of the blue 4.5 years ago. We happened to be driving at the time in the city I grew up in which is about the 5th largest city in Canada. This turned out to be a bit of luck because fire fighters and ambulance arrived in 9 minutes which was right before she stopped being able to breathe on her own. From her initial cry telling me her head hurt to not being able to breathe was about 12 minutes. So you can see how close she came to dying or suffering extreme hypoxic brain damage. She was taken to the closest hospital to be intubated and then to the children’s hospital where a neurosurgeon was waiting because the first hospital had called to say a neurosurgeon would be needed. She had an emergency brain surgery that night. She was a mess in the ICU for a month. I cannot describe the hell we went through as she clung to life. She turned 10 in the ICU and had no idea because she was in a coma. She had to have a tracheostomy and a feeding tube put in her stomach. She was paralyzed for months and didn’t speak a single word for 5.5 months. In total she was in the hospital for 8 months.
My daughter has somehow made a remarkable recovery considering how severe her bleed and subsequent stroke were (that’s what a brain bleed causes, a hemorrhagic stroke) but she will never be the person she should have been. She has permanent physical, cognitive and emotional deficits.
I made a video describing the first 2 years of her recovery. Katie's AVM Recovery - YouTube
Please have your son stay in Australia for the surgery. Everything else he is meant to accomplish can surely wait.
Also, Katie ended up having a second craniotomy about 18 months after the first because they discovered they hadn’t got quite all of it (not uncommon with emergency surgery when there’s a huge bleed and swelling). So we have also experienced a planned brain surgery. Honestly it was a complete breeze compared to what she first experienced. No comparison at all.

Thanks Allie. I wish you had seen it a week ago as it would have been nice to have more time. This has been a crazy 2 weeks and my son was just not ready mentally to deal with brain surgery. So he has decided to go back. Today. He is going to have the surgery in May. And I am really hoping he is ok til then. He will red shirt this season as the doctor said he will be fine to play after the surgery. But I saw your post as we left the doctor’s and I burst in to tears… it is everything I am terrified of. It also made him cry as I don’t think he really understood how worried I was. It is going to be a very long 9 months.
I wish you all the best and am truly sorry about Katie.

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So I just want to encourage you, having made a decision, that we all know these decisions are just about the worst things to have to do.

Reviewing what you’ve said, he has headaches but the doc has not attributed them to the AVM but in taking a close look, you’ve discovered an AVM and an aneurysm. Equally, one of your comments indicates that the doctors are concerned about significant side effects from attempting treatment, so it is very much devil-and-deep-blue-sea choices to be made.

None of us know what the course will be and he has in all likelihood had the AVM since before birth, so it’s quite reasonable to assume that he can follow the course that he’s decided on and come out as well as otherwise. It doesn’t help to think about the other route and we should never blame ourselves for choosing one road rather than another, for turning left rather than right.

Never.

We all understand the difficulty and the balance and the importance of it being his decision, especially at his age.

I just want to say “It’s going to be fine” you mustn’t worry your way through the next nine months. It won’t do you any good, it won’t help the situation and it might not do him any good. So don’t worry.

Big hug from me!

Richard

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By the way, I needed this lesson for myself this morning, so it is a useful thing that you’ve provoked me to say it because it applies to me in other things. I should take note… :heart:

Bless you Dick! I needed to hear that today. And I don’t begrudge his decision. I also think a second opinion from a larger institution in the USA is the right decision. I don’t know many adults that could cope with being 100% fine (the headaches were tension headaches and disappeared a month before his MRI), diagnosed, angiogram and do the surgery NOW in less than 10 days. Most people have a few weeks between doctors appointments , scans etc. to wrap their head around what’s going on. Thank you for the lovely words of encouragement.