AVM Survivors Network

18 days til son’s craniotomy


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.



Very glad to hear your son is back in the comfort of home and that his pain is now under control. I found whilst at hospital I could not rest or sleep properly since I had constant interruptions for tests and the light and noise bothered me. I too needed alot of catchup sleep once I returned home :slight_smile: relieved that steroids did the trick for him too!

Wishing your son lots of peaceful rest and a good recovery! I’m sure you will, like my mum did, begin to feel relief as you see your son start to feel in better spirits over coming weeks.

Love and hugs,



Hi Lisas,

How is your son doing 3 weeks after you went home ? Is the pain gone ? Is he still on Kepra ? Wish you the best.

We are stilling waiting for the surgery date for our son in June.


Thanks for reaching out.
Noah is a month out today. Yay! No one would ever guess he had brain surgery. A week out from surgery, his pain was completely gone. He only took one pain pill after one week. The keppra affected him at first but after a few days, he was back to himself.
Noah is back to himself. We are so blessed.
I’m so glad and you will be too when this is in your rear view mirror. That’s how Noah’s neurosurgeon put it and he is so right.
Anytime, you want to ask me questions, please feel free. I’m here to help you just like the group helped me. Tell me again, when is your son’s surgery?
Thanks again,


Just saw that you don’t have a date yet. Hope y’all find out soon. It’s hard not knowing.
Let me know if you have any questions. I’m here to help.


So happy that everything went back to normal for you guys. Hope we will have the same kind of positive experience, even if there is a though part for sure. Yes, the waiting is hard to deal with but hopefully we will get the date and the planning of the surgery this Thursday.


As soon as you know, it will be scary but relief at the same time. The hardest part of the surgery is when they will take him to surgery. Prepare for it to be very emotional. That was so tough.
Do you know how long his surgery will last? Have they told you any of the details?



Thanks for the updates. I have been thinking about you and your son. My son’s AVM removal is on June 19th. My anxiety is getting the best of me. He is as cool as a cucumber. He asks questions and then moves on. Thanks for sharing your experience.



My son acted like he was cool as a cucumber too. I think he didn’t want me to know he was upset and scared. I cried a lot and it upset him but how can we not be emotional? If you have any questions, please feel free to ask me. I’m here to lend support and advice.



I think it is undoubtedly more difficult as a parent than it is as the patient. As the patient, you can come to terms with the options presented but as a parent, it is someone you’ve invested so much in, it’s a real grief / denial / shock thing to have to deal with. It’s absolutely normal to be like this.

Very best wishes



Thanks Lisa and Richard,

We are now 14 days out until surgery. I have more anxiety then ever. But it doesn’t help that the in laws are moving their household in my house until they find an apartment. And dropping in when ever they feel like its good for them to stay the night or even 3. But that’s another story. School is out for the summer, they are officially seniors, I have spoke to the school about his upcoming surgery and will be back in touch with them come August. How was his recovery and what were good things to take to the hospital. How is he doing now.

They tell me that surgery will be about 3 hours. And will go home about 3 days after wards.



Hi Cori,
Fourteen days will fly by and this will be behind you.
I was very nervous leading up to the surgery and asked my dr for some xanex and she gave me some because i needed to be able to function. I only took them at night when I was left to my own thoughts. The hardest part of surgery day was when they took him to the operating room. That’s tough. There’s nothing that can prepare you for that but know that it will be emotional. I knew that I’d break down and my son knew too. During the surgery, we would get updates so that helped ease our stress.
When they woke him from anesthesia he was giving high fives to all the surgeons. He was in PICU for 3 days. He was on powerful pain meds and it was hard to control the pain at first. He had some vision deficits but that’s all back to normal now. We stayed for 7 days at the hospital because his pain level was high. Monday was the surgery and we left the hospital on Sunday. The surgeon gave him another round of steroids and there’s been NO pain since then. A week after surgery, he was back to himself. He doesn’t have headaches. No one would ever guess he had brain surgery 6 weeks ago. This will be y’all too. They are young and bounce back very fast.
I tried to get everything around the house done. I didn’t want to worry about it.
Anyway, I’d bring a blanket, pillow and wear comfy clothes. Bring snacks, bottled water or other drinks. Bring some word find magazines. That helps to pass the time. Your son will be sleeping a lot so you’ll have time to sleep or do your puzzles. Bring his favorite snacks because he will be up at all hours. His days and nights may get confused and you’ll have food for him in the middle of the night.
As far as school went, they were great. They gave him the grades he had and he did not have to make up anything. Probably after three weeks, he was ready to go back but didn’t have to. He will take 2 finals(EOC) in a couple of weeks but that’s all he has to do. We were blessed. We were so thankful we did not have to worry about school. Complications aren’t something we can know about before hand and stressed that to the school.
He will be fine. Prayers for low stress during the next 14 days. If you’d like my phone number so you can text me with questions, I’ll give it to you.
It will all be over in 15 days.
Hugs, Lisa


Just checking in on y’all? How’s everything going?
First week is hell.
Thinking of y’all,


Your right the first week is hell. And we are only 3 days into it. Matthew had surgery on Tuesday they got started 2 hours late. Matthew has since been mute and his fine motor skills have been slow.

Matthews biggest struggle is he can’t swallow food or drink. He is currently on a feeding tube. He can’t talk. He can hear you and everything around him. He can say his name, and Yes and No sometimes. But mostly hums yes and no with head movements appropriate to his answers.

We work with him on his movement with hands and squeezing.

His drain should come out tomorrow. But they are telling us after Monday we should be out of ICU and possible moved to another peds floor on in the hospital. But they are saying long term inpatient rehab care at another hospital.

Matthew stays awake and not real focused for any longer than 5 minutes. I feel guilt. Did we make the right decision? But after talking to our surgeon this morning he stated we did. As if this would have ruptured than it would have been fatal. And would have done it with his own child.

This week has been an emotional roller coaster. Medical staff are amazed on how it was found in a twin study. Just so random.

How is your son doing post op. Thanks for reaching out to me. It means a lot.

Hugs to you



I’m so sorry for all of the problems that hopefully are temporary. Of course y’all made the right decision.
Another mother’s son had to learn how to walk again and now he’s playing baseball. She also questioned her decision but now her son is 1 yr and half out and perfect. Kids are resilient and you really have to wait for the swelling in the brain to go down. Once it goes down, his functions will start returning. Some functions may take longer but that will depend on the location of the AVM. Don’t get discouraged and remember that you’ve been led on this path so your son could be AVM free and not have a stoke or death.
This was a major surgery and soon this will be behind you. Just be patient. It took a good seven days for the swelling to go down. Noah had vision problems but that all went away and he’s himself now.
Sending prayers your way.
If you need anything, don’t hesitate to ask.


I know you’re busy but wanted to check in to see how everything is going.


Wine! And lots of it!!


Yes, how are things going now?


Thanks all. Its been a whirlwind here. We were released to a rehab hospital where he worked and came back to his room tired and exhausted. Only to find out he had a infection in the incision. So back to the Children’s Hospital we went. Matt had to have the incision opened and cleaned out. We are on a round of antibiotics for another 10 days and have been here in ICU since July 2. Matt had his drain clamped on Wednesday the 11th and his incision started to ooze so the CAT scan showed it was CSF. And now a shunt is needed. That will happen either Monday or Tuesday. This poor kid. He will then be released to the rehab hospital with in 24 hours after that.

Matt has regained a lot of his speech and right side strength. Matt has some anger, but that is to be expected. We are and will be working on that. He is awake and enjoying watching movies and playing games…And has found out that he has passed his AP European History College Exam as a junior in high school.

Dad has returned to work, I have returned to work and twin brother is hanging in there. I am thankful I work close by and my boss is understanding. I am leaning on faith and it gets us through as He has a path already made for us.

Thanks for the thoughts and checking in on us. I am sorry I have not updated at all. I have meant too but between living at the ICU, home and other items at another hospital and work, life is a roller coaster still.

We have made the deal that if Matt doesn’t complain and hasn’t then we can’t either. We just count our blessings.



Prayers to rid his body of the infection and Amen that he is AVM free! Congrats on his AP test too. That is an accomplishment.
Keep us posted.