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
1 Like
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.
4 Likes
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!
Richard
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!
1 Like
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.
1 Like
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) 
2 Likes