Australian avm groups

Hi all. I am not sure yet if I am posting this right or replying to someone else. Sorry in advance if I muck it up. This has been a world-wind 2 weeks for us. My son who is 20 was diagnosed with a R cerebellum AVM with an aneurysm. It is considered small (but I am not sure that is a good thing). He has no symptoms but it was inadvertently discovered on an MRI the week before he was to return to University in the USA. To give the decision some context he is beginning 3rd year. He studies, works for the university as an RA and in the IT department as well as working on a project which develops AI technology for medical applications. He is also president of the University financial/investment club. He is incredibly smart (genius level) but you wouldn’t know it. He’s incredibly social plays soccer (and use to row) on the Uni team. Needless to say he is a little busy. He relies on his ability to relay complex ideas and communicate effectively and is really worried this will be affected. He is really stuck making a decision on surgery now or trying to put it off until May which is the start of his summer break and 10 weeks off. We can find no information on the risk the aneurysm adds to this. What are the real risks and recovery from Surgery? Will 10 weeks be enough to then function again at a high academic and work level? Oh and I should mention that where he is in the USA you would NOT want them to be working on your brain! Airlift to the Cleveland clinic would be good but I am not even sure that is an option if it ruptured? Is there time for that?

It will be almost 4months since my avm surgery ans I’m praying that I get clearance to go back to work on Monday. Fingers crossed!

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Wow!

That’s three new Australians in a week!! Welcome all!

@Bsmom I often stray rather too close to giving advice (and this forum is about personal experience because we are not doctors) but I think the questions I’d ask would be how the doctor views the risk. Since it is an incidental finding, especially if he doesn’t have any symptoms, then it may not be actively doing him much harm. It’s a good thing to know it is there because it means you could do something about it.

Sometimes these things are in a very inaccessible place in the brain – too dangerous / disruptive to do anything about and the advice from doctors can be that you’d lose more function trying to fix it than it is worth, so some have to be left. If you’ve already had sufficient advice to indicate that an operation is the best course of action, then your consideration of when to do that is a good one.

@Ben wow! Reading your profile shows you’ve been through quite a time! How are you doing?

@Raf, when are you due for the embolisation? I notice you say you have a DAVF, which is the same as me and the same as @AlwaysCurious who is in Australia (I’m in England). If you’ve got any questions, shout them up.

What I’m inclined to suggest is that you each start your own story in the New Members section or elsewhere, as I think the conversation will get complicated with you all in the same place but it is really helpful for you each to know you’re all in Australia.

We do have a group @Australians that you can join so that in future you can keep track of who’s who or come back here to ask Aus-specific questions.

Hi @Bsmom

Hope you’re keeping well during this difficult time as we battle the Delta variant! It’s difficult to give general advice as each individual’s recovery varies and it would be best to have the medical experts decide on the timing etc… considering his age you’d think getting it done over the break would seem reasonable but then again we don’t know how he is going to recover but rest assured the chances are he will be fine and not have too many issues.

From first hand experience I would say I’ve never been the same ever since my removal in 2011 but nonetheless grateful cause I did suffer a bleed and glad I’m alive… that is the bigger picture here to be honest… he may want to wind back strenuous activity like heading a soccer ball until he gets this sorted… God bless!

Prayers out to you mate… God bless!

Hi @Christine_O hope you guys are doing well especially battling this mess they call Delta out here… been in lockdown since late June in Sydney but nothing appears to be improving so it’s quite concerning & frustrating… other than that I can’t really complain it’s been busy raising 3 young boys under 7 and working but grateful nonetheless… God bless!

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I got it I got my woek clearance I have medical tomorrow which should be no problems and now I can get my life back!. Someone asked what type of avm it was and it was right parieto occipital avm

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Ibstruggled with two kids for a week in lockdown i have no idea how you would do it especially since there is no sign of it ending

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Its very difficult but you have no choice but to i guess… my wife works 3 days a week in the front line while I try and work from home full time… Glad to hear you got your work matter resolved and wish you and your family all the best… God bless!

Thanks. Sorry for taking awhile. I think I am not posting/answering correctly??? I am sorry yours bled before you got a chance to see the doctor. And that is my real stress…… the damage and recovery if it does bleed. He has stopped all weights/gym work. He doesn’t really drink due to sport so stopping isn’t a problem. Soccer may still be on the table as it doesn’t raise bp in the same way. See the surgeon again Friday and will go over what a delayed surgery will look like.

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Good plan. Get the informed medical advice, then your son can make an informed decision.

My advice is to sit down with your son and make a list of questions you both have. Often we can go to these appointments in an emotional state, the dr’s, who deal with this sort of thing everyday, can seem a little blasé. Meanwhile our thoughts are running at hyper speed. It’s very easy for us to loose track.

I’ve left appointments, then 1/2hr later I’m thinking ‘Ohh I should have asked about that…’ Next time I had a list of questions I could refer to and I ticked them off as I got answers. The discussion I had with my wife assisted to make the list, to answer ALL of our questions, some things I hadn’t thought of. An ‘outsiders’ input was a must because my mind was rolling over the same questions, repeatedly.

Wishing you the very best for the appointment on Friday. Please do let us know the outcome.

Merl from the Modsupport Team

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Jack said at the start of this Covid business that he used to think his life sucked but then he realised he was just in training for Covid.

Not really much different for us under lockdown here in Melbourne and in some ways it is better for Jack. Medical still continues, we weren’t going anywhere anyway and it is the only time Jack is actually taught by teachers. We get out of lockdown and he’s cut off again and left to struggle to do it on his own with some support from us. While he is killing it in some subjects he won’t graduate because he needs to be taught English by an actual English teacher. He hasn’t had that since he was 7 and he is now 15. 145 IQ and won’t graduate high school.

Other than that it’s been a busy 6 months. Stress is starting to take it’s toll on me and my 17yo stopped breathing in a Epileptic fit. Lucky I was in the room next door or we would have been burying him. Six months - 1 ambulance, 2 ED admissions, CT, 2 MRIs, 9 EEGs, 3 ECGs, 2 Stress tests, 3 surgeries and a bit over 250 medical appointments involving 13 different specialties. A few for me, more for the other son but Jack still far and away leading the charge. And if we had time to get bored of course we have our protests and an earthquake to spice things up.

Curious as to why surgery is recommended in his case on a small, unruptured AVM. Have you gotten a second opinion on this?

There are no definitives when it comes to the brain. Each person will be different. If he has no symptoms then I would be asking the specialist if this can wait. That is not advice we can give. You also need a idea of the possible (though again not definitive) side-effects that he will suffer. Some he may recover from and some may be permanent.

I would be having further discussions before making any decisions on this but compile your questions prior to your meeting.

Hi

I think surgery is suggested mostly because having a bleed can be catastrophic with several possibilities for long term consequences. And yes surgery has consequences too. Small AVM’s can actually be worse if they rupture but the main urgency is the aneurysm. That is why it is an impossible decision (accidental finding, no symptoms, and completely unexpected) and so hard to make. Neither option is necessarily the right one. Often it is best to leave them alone. And that is what he based his decision on… risk of a bleed, risk of surgery vs leaving it alone. Time is the issue…. No one knows. Does he have time? Lots, little or not really any? He is going to get a second opinion on the 29th. So that will probably be when he makes a final decision on when or if he has it removed and whether or not it can wait until May/June. He is lucky in that it seems to be in a good place for removal :face_with_raised_eyebrow:. But so many logistics to sort out….

Hi…touch base if I can Jack with English. It’s been awhile since I have taught but happy to help out if I can.

That is correct… I had a small AVM with no symptoms that was found by accident when I was 30, however a month after finding it I suffered a bleed before my first neuro appointment… so I knew what was happening when I was home alone after a few weeks of research online, which is scary as I could of dismissed my bleed resulting in a worse off outcome or even death… if it’s safe to remove I’m all for it but again the patient needs to feel comfortable and you need to trust the medical experts giving the advice… God bless!

COVID has been a pain & being we are both from NSW & VIC we are both feeling it with all the current lockdown mess… I pray you guys see the light at the end of the tunnel and things improve sooner rather than later… God bless!

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Thanks Adrian. Small does definitely not mean better as you know. Second opinion soon. I am secretly hoping he will do the surgery at Xmas break rather than waiting until end of the school year (mostly because I will probably be loopy by then :flushed:). We are in Tasmania and had a very good neurosurgeon here but think the Cleveland clinic where the surgeon does then weekly (and has best equipment available) will probably be where he decides to do it. Needing a clear covid test and trying to get out of tassie means 3 days minimum to get there. So I guess when I go in December I will be there for awhile.

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Please keep us posted & wishing you all the best… God bless!

I fight to the death on things I can do something about and park those I can’t. I’d never cope otherwise lol. And lucky me to live in the most locked down place in the world!
Some days we get a bit over it but mostly we’re doing just fine. The older son (17) experienced the most impact and his mental health went off for a bit there but I brought him back. Both my boys generally have incredible coping techniques with all we’ve experienced but our big lockdown last year was a really depressing time for everyone here.
Off to Monash Children’s tomorrow for a 2-3 week rehab admission for young Jack which will be a bit of a pain as a lot of the areas I usually access during stays will be closed and I’ll have to avoid the main hospital (which has the best cafeteria by a long shot) because they are housing the Covid pregnant mums over there.
We all got our second shot a few days ago but there are still strict instructions that no staff are to come near Jack if they aren’t in full PPE and double-jabbed. Vascular conditions being of major risk with Covid as you know.
Hardest part as always, will be keeping people from petting his medic alert dog who will be in there with him the whole time.
My older son is a bit happy though, as are his friends, as 1-2 of them have been authorised by the police to come stay with him whenever hubby and I are moving Jack in and out of the hospital or doing his bathing or shift changes and he would be at home alone. Due to his Epilepsy it comes in under compassionate in case he has a fit and an ambulance needs to be called. We have no family who can do it.
The pool table, foosball and table tennis table have been dusted off and are ready to go lol. As long as they keep up with their school work and exercise they can have some fun together.