I want to share my story with you as I am also 20, played competitive soccer, and I just had my cerebellar AVM removed this week.
Mine AVM ruptured when I was 16 and before that I played competitive soccer for many years. I have since recovered mostly from the rupture, but I was unable to return to the competitive level as you know coordination and balance are extremely important for soccer (and which the cerebellum is responsible). I am however able to play house soccer now. I had 2 craniotomies to remove this AVM. The first I had was in 2018 and we thought it was completely gone afterwards, but then it reappeared on a follow up angiogram a year later. I had my other surgery just on Tuesday. Also I originally had my rupture in the US (new york) (Im from Canada). We had insurance and the doctors and care was amazing, I was so lucky to be there. Were in the US is your son going to school?
Is there any possibilities that your son could have embolization or radiosurgery? Cause these might be better options if he still wants to continue doing all he’s doing in the fall. Its probably best not to have surgery and play soccer right away. But my first surgery was in feb and I started playing again in the fall. I don’t head the ball now (only by accident sometimes), but I asked my surgeon about this and he said it was fine just maybe not right away and to be mindful of symptoms should they arise.
Honestly, my surgeon also told me that it was relatively straight forward, and I thought the same thing as you (like its still brain surgery) both times I had the operation. Of course every AVM is different, but for me I did not have any increase in coordination, speech, or balance issues after either of my surgeries. But for sure headaches and fatigue.
My first surgery was definitely harder and more painful, but I just had my second surgery on Tuesday and I’m feeling great. I came home from the hospital on Thursday night after my angiogram. I am currently just taking Tylenol. And looking forward to starting my 3rd year at university with a reduced course load in September.
Hi Ella. Great to hear your story, sorry you had to tell it. He is in Erie Pennsylvania but he was going to try and get a second opinion from Dr. Mark Bains at the Cleveland clinic. He has zero symptoms it was found accidentally. The thinking is that both embo and radio surg are more likely to aggravate it whereas they think microsurgery will get it out cleanly. Right now the risk of surgery is higher than leaving it alone. Our surgeon here actually did a fellowship in Toronto so we know we are in good hands. But it looks like the medical coverage in the USA is just as good as in Australia. (I’m Canadian so is my son but we don’t get coverage in Canada). So I was debating on seeing if he would rather get it done at the Cleveland clinic. Maybe they are more experienced.?? Better aftercare??. Rehabilitation help??? But where to recover is the issue……
We know here he would be kept in a coma for 4 days after the surgery to avoid swelling and any complications (due to moving mostly). And then of course recovery at home is always better. He also wouldn’t be thrown out of the hospital before he needed to.
He is red shirting this year with the hopes of playing next year. How long did it take to get back your balance and coordination? What about speech and ability to communicate your thoughts? And what about the headaches? How long did it take….would summer break be enough? He is back in Erie now got in last night. But he has an appointment in May for another angiogram and then all the other scans and surgery will be done that week. We just can’t book it in as we don’t know if Australia will still require 2 weeks quarantine on international arrivals (hopefully not by May!) But I also just realised that is also going to make the Xmas break tricky as he was going to Canada to stay with my mom…. And I don’t think travel insurance will cover him now!
I did about 5 months at a rehab facility (inpatient and outpatient) after my rupture to get most of my function back, I also had PT weekly for a couple years after, but I didn’t have any increase in balance, coordination, or speech issues with either of my surgeries post rupture. Again, headaches were a problem after my rupture, but headaches post surgery didn’t last long. With my first surgery it took a little longer as I was still recovering from my brain injury, however headaches haven’t really been an issue for me since my last operation (mostly just incision pain). Fatigue and nausea were also a problem for me.
Recovery really depends on the AVM and the person. Being young and healthy would probably allow him to have faster recovery.
Do his doctors think he will need rehab after the surgery?
Thanks Ella. Your insight is so helpful. No they don’t foresee issues, but there are no guarantees. Just likely to be temporary issues. I think recovery at home will be best…… just hanging out for Australia’s borders to open.
Hi @Bsmom. First off I want to let you know that I’m thinking about you and your son at this time and truly understand what an up and down journey this diagnosis and treatment planning can be. I can not even begin to imagine the layer of complication that y’all are facing with international travel and coordination. Please accept my sincere best wishes and love from California! I wanted to share a perspective from “the other side,” so to speak. I am a 36 yo woman in generally great health, and I experienced an AVM rupture from a small (similar size to your son’s) AVM in my occipital lobe near the parietal junction back in Dec 2020. It was a significant bleed and I stayed in the ICU for 7 days before having a (mostly) emergency craniotomy at Stanford, here in CA. I had absolutely no idea I had this AVM in my brain. No signs or symptoms, no reason to think this could ever happen. Had I known about it, I would have done absolutely anything to avoid the rupture. Interestingly I got the chance to avoid another rupture after my first surgery, because I had a residual bit of the AVM in the same area and it required a second craniotomy in the same place. My neurosurgeon was confident and somewhat adamant that I get the second surgery. Essentially, I was walking around at elevated risk of stroke again and he knew he could successfully and smoothly complete the operation once more. I agreed and had a second craniotomy in March of this year. Now, nearly 6 months later, I’m very glad to have made the choices I did. If you and/or your son have any questions about the operation, the recovery, or any of the various decisions this whole thing requires - please don’t hesitate to reach out. Wishing you all the best, Savanna.
Thanks savanna. Youth is a wonderful thing…sometimes! I think it was all too much and he just wants to be a normal as possible. So he is going to get the operation at the end of May…… it’s just an agonising wait. We are pretty clear about the op, what will happen etc. His 4 days in a coma afterwards then recovery. What does that look like? How much physical help will he need? Hers 6’2” and almost 90 kg…. And I’m shrinking (in height not weight ). Not sure how mobile he will be? Capable of stairs? I think the recovery (time?) is our big unknown. And none of it really matters because we will be fine and cope easily. The doctor says he should be fine to play soccer after the op. But I can’t imagine that in 10-12 weeks that will actually be ok… ??? But I also know recovery is a personal thing…. And I am good at the impossible.
It’s a really tough call to make i guess without the medical experts who are looking after him guiding him on the best course of action to tackle his AVM… of course being stressed and worried about the issue is normal at any age you are and for any parent whos child is going through this.
I would definately have him speak to the medical experts to weigh up risks etc so he can make a better decision that he feels comfortable with… God bless!
Sorry, but that really can be a ‘How long is a piece of string??’ type question, that nobody can answer with a 100% guarantee. Every person, every surgery is individual. Two people can have exactly the same surgery for exactly the same condition but have vastly differing outcomes. Personally, I’ve required a few neurosurgeries and none of them have been the same and nor have the recoveries. It really can be a step by step sort of process (and sometimes those recovery steps can be backwards).
How much physical help will he need? That’s the next step and you can’t really establish that until the first step (the surgery) is complete. You could investigate what sorts of services maybe available and how to access them, so you have ‘some’ information and are not starting from a blank page. But your son may come through all of this OK. You could arrange a 24hr nurse but then find it’s not needed, you could find that your son doesn’t want any assistance. These are all things that you need to discuss with your son.
I’m going to go back to a statement I made initially “…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.”
Looking at my own list of ‘What if’s’ prior to my first surgery was a little (OK, a LOT) confronting to say the least, but from this some sort of plan could be made. For example, I have a mortgage, if I can’t work, can’t earn, then what?? So I got an insurance policy to cover my mortgage. If I came out the other side and needed 24/7 care then what? So I obtained total permanent disability cover. Then there’s wills, power of attorney etc etc. These are all things that should be discussed prior. As I again said earlier 'We all hope/wish/pray it never happens, but ‘What if…?’ I have been in situations where none of this was discussed and when things declined nobody really knew of the patients wishes. It was not pleasant at all, with differing family members all having a different view.
Hi, sorry to hear abouy your son. My AVM wS never found and it ruptured. I I wish I had a chance to stop it before. I am half blind for now and having a hard time coping. I can’t even figure this forum out. can you tell me how to atRT a treat or post ? I need to connect but can’t find help. thank you and prayers for your son
Hi Magster. Sorry about your struggle. And yup being born with an AVM really sucks. I gather most people don’t know. We didn’t either but now we do we just hope he gets through to his surgery date. It is a good forum…. Just have to play around. I am pretty new too and not really sure if I posted or responded properly. You have some great resources in the USA.
Hi there,
I was away on holiday and not really checking things. I hope your son is resettled well at school. Glad the surgery is booked and I’m sure he’ll be fine till his surgery. Hope you’re doing ok, mum.
Allie
Hey @Bsmom ! I’m glad to hear your son is gonna get checked! I know this probably is a very terrifying situation for you both. But let me reassure you. I am 40 now, but because of my parents and doctors persistence I am alive today!. I bled in 2000, out of the blue first when no one had any clue in my family what an AVM was! I had to relearn how to walk, talk, read and write. I finished rehab, finished college, and eventually 3 years later graduated. I worked full time for about five years then moved to Texas for my studies. Met my wife at the college I was attending. We got married, had first kid, then in 2010 I experienced another bleed before I could get scheduled for surgery. Then fast forward to 2019, after rehab, after treatment, I was working full time again and I had a stroke from a ruptured AVM deep in my brain. That makes four. I say all this to say, I’m not sure if it’s the infancy of detecting AVM or the precision of certain doctors at various facilities, but if you don’t feel comfortable with your diagnosis, let the doctors know. You are your best advocate! Blessings as you continue!
I had Gamma Knife in 2006 and 2012. At age 24, I discovered the AVM grew back during puberty, and it caused a bleed. So just something to keep in mind: your son is still growing, and from my experience, I never imagined my AVM would grow back, but it did.
Thanks everyone. The support has been great. Sad that any of you has to deal with this. But 9 more days and he’ll get a second opinion at the Cleveland clinic. I think this will be a good thing as they see a lot more of them.
Thanku for taking the time to send this. I also have a cerebellum surgery coming up. This has helped alot! Mine is a bleed that caused a stroke. I’m very grateful to be alive.because of covid after my 3 embolizations I had to wait 5 weeks to have surgery. I’ve thought every possible bad thing but also every possible good thing. I have an awesome confidant surgeon and I think I just want it over! Thank u so much…
I am very delighted to hear, that my post could help you in your journey and ahead of the surgery! Having a surgeon that is confident in himself and confident in the procedure is also a huge plus! I can confidently guess that your stroke and three embolizations were already a lot to go through and with all that I am convinced that you will make the surgery with no troubles and a fast recovery! I wish you all the best and that you can leave the AVM chapter of your live soon behind!
). Not sure how mobile he will be? Capable of stairs? I think the recovery (time?) is our big unknown. And none of it really matters because we will be fine and cope easily. The doctor says he should be fine to play soccer after the op. But I can’t imagine that in 10-12 weeks that will actually be ok… ??? But I also know recovery is a personal thing…. And I am good at the impossible.
God bless you
