AVM Survivors Network

18 days til son’s craniotomy


Hi Lisa,
What date is your son’s craniotomy scheduled?
Can’t do the math…18 days from when?
We are all rooting for you, and for him.
And we will be here waiting to hear about how well it went…


Monday and I’m a nervous wreck. I was gonna write on the groups wall tonight.
Thanks for asking.


Hi Lisa,

Please always remember when you didnt know it was even there! I look at the things I have done throughout my life and suprised how i had never had a rupture until I was 31!

I had played a lot of physical sport, martial arts and even boxing and such a young age!!! So keep this in mind and I know its easier said than done but please try to relax for his sake… God bless!


It’s completely understandable. It’s going to be fine. We are all with you all, reaching round the globe.



Thank you and I know but when they take him back for surgery, I just don’t know how I’ll handle that. I’m trying to stay strong for him and not let him see my weakness. I know that next week at this time he will be at home safe and sound.
Thank you,


You are so right. My son will be free of that AVM soon. We just have to get through this Monday.


I know. And I’m not sure how I would be as a parent of. I’ve not had a craniotomy, either, and I’m less comfortable about a craniotomy myself but as I was otherwise in Noah’s position, I was just focussing on going through the steps at hospital. They know what they are doing and the only thing to do is to do what they say, one step at a time.

My wife was probably like you. Despite the fact that it was a long, long day maybe 40 miles from home, she stayed in the hospital all day. I think we got there for maybe 8am. I think my procedure was early afternoon but actually it was all delayed and I think I was in recovery about 6:30 pm and not on a (high supervision) ward until 10pm or 10:30 at night. That was a heck of a day and I don’t know how she got through it. All I had to do was lie there and go through each step, whereas my wife had to “not worry” in a pretty boring place for the whole day.

So… think a little bit about how you’re going to get through the day, otherwise it could be hell. Being there is a great thing but there will be acres of time that you’re doing nothing. He won’t need you, actually, other than to take him there, be there until he goes in and to be there when he comes round. So work out how you’re going to keep your mind busy or get out of the hospital for some time while his operation is going on. Remember to eat and drink, yourself.

You’ll both get through it. It’s going to be fine. It’ll take time but it will be fine.

Thinking about you already.

Lots of love,



Thank you. I’ll sit in the waiting area with family and friends. There’s a nurse that will come in and give us updates about the surgery. I’ll be there waiting on pins and needles for her every word. Hopefully, everyone will keep us together and time will pass by quickly. It’s definitely hell on the family.
The hardest part will be when they roll him off. I just want to be strong so he will be strong. That’s my only fear and of course, the fact he’s having brain surgery.
I want him to know that I know he’s going to be fine.
I want to thank you for all of your words of encouragement. This group helped me manage.


Your son and you will be in our thoughts and prayers tomorrow! It will be fine, he will soon be AVM free. Take Care, John.


Hi Lisas,

We just decide that we will go for craniotomy for you son also. It should be done in June.

I can imagine what you are going through just before tomorrow’s surgery. You will be in my thoughts and prayers. I will also send you energy so you can be strong for you son and go through that day as easy as possible.



Hi Nadine,
My son is 4 1/2 days post op. It’s been a journey. We are still in the hospital trying for pain management and a bowel movement. I think the pressure in the brain from the surgery is really the culprit right now. Everyone is different but we are waiting on the time the headaches are just headaches and not pounding, pressure headaches. The neurosurgeon says this should start subsiding soon and he will have regular headaches. I’m hoping for relief for him because, I won’t lie, it’s tough. The most important fact here is that he is AVM free. No more worries about that. Although to my son, he feels like this is how his life will be forever. Pain.
Please feel free to ask any questions. Prayers for you and your son,



Im sure this is pretty normal, especially of he’s got some swelling going on (and I dont see how your head doesn’t take great exception to a craniotomy: it has to be seen as a major assault). I “only” had an embolization but had headaches from my vessels smarting at the glue for at least a week:

I’m sure he will get better. He’s done a big op. He needs to be patient.

Lots of love,



It takes time; after my craniotomy it went from a screaming headache slowly to a throbbing headache to a dull headache I was still getting sharp piercing headaches for almost a year but they do slowly subside! this post on this forum is great and it was very helpful to me to keep everything in perspective.


…that IS a good article. Well thought of, Mike!


Thank you. I tried to go over the highlights with my son. Of course, he feels there’s no end in sight. But today is a new day and it will be better.
It’s been a tough couple of days.
His pain has been controlled through the night. That’s a blessing. They put him back on steroids because iof his intense pain and now we are waiting for the results of his CT. They’re making sure there’s nothing else going on. His vision is already returning to normal. That makes me know in my heart that we are headed in the right direction.
Honestly, I feel had in not ruptured in surgery, he’d have a different outcome right now but it is what it is and this too shall pass.
Thank you for always trying to help ease the stress.


It is absolutely the rupture that is giving him the grief. I’m sure without that he would be much better. The key things are that he will get better and it was so much better to have a small bleed when already in the operating theatre than in the middle of a field somewhere. It does show that an operation carries risk – he caught some of the risk.

He’s going to need to be patient with himself. I’m quite sure being a young man will mean he’ll recover relatively quickly but I’m equally sure it won’t be anything like quick enough for either of you. I do hope his pain improves promptly.

Thinking of you,



Was he under general anesthesia? I read that some time people are kept awake to interact with the doctors that need to confirm stuff before operating but not sure they would do that for kids ?


Hi Lisa,

I’m so sorry to hear your son is having so much pain, I am hoping the steroids will bring him alot of relief as it did for me (considerable swelling reduction within a week of taking steroids). It is very positive to hear that his sight is returning to normal and that they managed to remove the entire AVM.

I am 3 months post embo (+ small stroke during the embo) and I’m still recovering, it’s definently a patience process. However, I have noticed much progress each week and certainly alot of progress from a few days post op (with pics to prove it: My sight development (post embo occipital AVM)). The focus is that your son is going through a temporary struggle and he will get better :heart:

I am glad your boy has managed to have pain under control to be able to get some sleep. If he hasn’t got them already, some earplugs and eye mask might help with being able to rest too. Hope your sons pain reduces very soon and that he can get to recovering back home soon too!

Very best wishes and love,



Yes Nadine, he was under general. We are home now and he’s been sleeping all day. I guess he’s gotta a lot of healing and needs that his rest.


Yes, he is much better and his pain is under control. He’s been sleeping all day. Just trying to get him up a few times to get his blood moving.
I know sleep is the best thing for him right now.
Yes, I think the steroids were the trick. His sodium was low and they put him on an IV to get it up. That can cause headaches as well.
We are just taking it slow and staying positive.
It’s so hard to see him so lethargic on that keppra. Makes me sad and I do have to remind myself this is temporary…
one step at a time!