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 BSMOM thanks for replying. I have to go and rst my eys now God bless you
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.
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…
Thankyou for this. It has helped me immensely. I don’t feel afraid anymore. thankyou …
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!
Oh my thanku. More to go thru than I ever imagined. I’m 66 and always been healthy. Never go to the Dr never take meds, always do thing naturally. So I guess I’ve always been afraid of drs. Lol… it’s how my mom is too. She’s 85 and very healthy. Waiting 3 weeks is getting easier. I try not to think it out to much. Somedays are harder than others. I was so afraid because of where it is but u sure helped to let me see it can be done. Mines in the vermis celerbellum. Doesn’t look like it’s big enough to do surgery. I guess it is. He didn’t even blink he just said we need to get this done. It’s a 3.5 to 4. . I’ll be so glad to wake up and know it’s over!!! Thanku again. Debbie
Hi everyone. I first have to say thank you to all of you wonderful people who have offered support along the way. You inspired me to get informed and gave me direction for how to deal with this unexpected AVM. My son had his craniotomy December 16th at the Cleveland clinic with Dr Mark Bain. He walked out on the 18th! In Australia he was going to be placed in a coma for 4 days after the surgery. I am still in awe and eternally grateful to have found this wonderful surgeon. I am also grateful to Highmark his medical insurance for making this happen. I wish all of you the best for recovery and know that my son was VERY determined to walk out in 2 days.
It’s really good to know he’s got through it really well (and does sound a lot less scary than going into an induced coma for any period!)
He’s very early in his recovery, so you both need to be patient and remember recovery isn’t a straight line.
Very best wishes for the year ahead!
Thanks everyone. And yes Richard, it is early days. And now as much as I am relieved he seems all better I can’t help worry. This was the hardest time dropping him back to University and then leaving the country! Although I haven’t yet left the continent but that will happen soon too. I got a big scare the day after leaving him as he got a massive headache and pain in the surgical site. I told him to take the meds and email the neuro. I was pretty sure it was just a quick rise in both from going from freezing temperatures into a warm room. Has anyone else had this experience? Can that raise your be enough? As for recovery he is doing great but tired today after his first day of classes.
Yea, it can be enough. The temperature can constrict the scalp, which in turn tightens the neck muscles, pulling on the base of the skull. Add that to the stressors of studying and it’s no wonder he’s tired after his first day back. Getting back into the swing of things can take a bit to normalise.
My recommendation is get back into it if he can, but slowly. His body will tell him when to slow down, but only if he listens… I didn’t listen. My body was telling me to rest, but I kept pushing myself, telling myself ‘I’m building stamina…’ by pushing that bit more and bit more, only I pushed too hard, too soon, doing myself more harm than good, ending up needing further neurosurgery. Initially the signs where mild, but they progressed the more I pushed.
All of my ‘normal’ limits had changed and making those adjustments to fit those new limits was a case of trial and error. Some days those changes will be manageable, some days, not so much. But he will learn what works best for him.
You’re his mother… …of course it was difficult. I’m in Australia, my mother is only in New Zealand.
I haven’t lived there for 30yrs and she still stresses out like I’m still her ‘Little Boy’. It’s what ‘Mum’s do’
Merl from the Modsupport Team
Hi… the headache wasn’t after studying just his first day there. He was outside checking in returning students and when he came back in he got the massive headache. I assumed it was a temperature thing. He was talking to the nurse (because he had a covid test come back positive) at the time so he asked her opinion and she seemed to agree. Told him to take the drugs as pain raises your bp too. Then he followed up with an email to the clinic and then went for a nap. So, I am blessed. I do have a sensible 21 yo (he’s more like 40!). That helps me not be too stressed but you are right. No matter how old he is he’s still my child and will always be the most important thing in the world to me (I kinda like his sister too ). He knows he can’t lift/exercise etc for at least 6 more weeks…. It that’s really hard when you feel ok. At least being tired after his first day of classes has made the GO SLOW point because he definitely doesn’t listen to me!
Since you’re his mum, you’ll nag him about this anyway (and he might ignore you a bit, as we all ignore those closest to us most, I think!) but remind him somehow that he is still very early in his recovery and that recovery isn’t a straight line.
He will have days when the headaches get him or dizziness or other unhelpful things and it is worrying and it is worth getting anything worrisome checked out but honestly, it seems to be the way of things that we are beset by weird stuff for some MONTHS post op. Not days or weeks – MONTHS – so to expect some of this and not be panicked each time.
I think you’ve both done brilliantly well.
You’re his mother… …of course he doesn’t listen to you
I speak to my Mum on the phone and I’m sure she can hear my eye roll over the phone when she starts ie “Don’t do ‘X’ and Don’t do ‘Y’ and remember to keep your fluids up and take your medications and do as the dr’s tell you and…” “Yes, mother, I will…(eye roll)” Like I say, 30yrs on and she’s still tries to mother me (And 30yrs on and I still don’t listen to her )
And I have to say again ‘…he will learn what works best for him.’ To be honest, it’s really amazing how the body and mind adjusts, adjusts and adjusts some more to be able to manage it all. One of my biggest battles was with the mind. My mind was telling me ‘You could before and you can now…’ but my body was screaming at me “STOP”. The body won that argument as the more I pushed myself, the more my body pushed back. It was telling me 'Laydown or I’ll put you down…" and it put me down HARD. That taught me BIGTIME and he will learn his own limits too. Sure, I can push those limits, but there is always a consequence for doing so.
I also have to agree with EVERYTHING ‘DickD’ states, especially “…we are beset by weird stuff for some MONTHS post op. Not days or weeks – MONTHS…” I’m years on from my last surgery and I still get some ‘oddball’ symptoms today. I just have to ‘Roll with the punches’ or adapt to what ‘Today’ throws at me.
Merl from the Modsupport Team
Hi there! Haven’t been on the page in forever. I hope your son’s recovery from surgery has gone really well!
Thanks Allie. It went brilliantly and recovery is so far going well. Repeat angiogram in June. Killing me not to be there (might show up…even if I am not needed)