I know this has been asked before, but I need your thoughts and experience

Andrew’s AVM has been obliterated through two crainotomies. After his second surgery in March we asked can he ride roller coasters (we are big fans). The doctors acted like he could go out and ride them right away, but then acted like no direct head contact for six months eg. football. Well a lot of coasters I’ve been on shake you up pretty good. Andrew’s end of school trip is to an amusement park. I’m not sure if any of the rides the spinning ones, rollercoasters, etc. are okay or not. The Avm has been obliterated, but he will only be post op two months. Andrew has never had seizures. He has had embolizations with coils and glue, which I’m sure some is still in there. What have you been told or done since AVM is obilerated? I don’t want to be a paranoid, over protective mom, but I don’t want any more drama with Andrew’s brain either.

Janice,
I understand that your worried about your son and his health. After my surgery I was told not to fly for a certain amount of time…which I didnt pay attention to because I have never flown before. and I was also told not to go on rollar coasters and I was a BIG FAN of them too. But I do have seizures so that could have been another reason why they told me that. But since you say his 2nd surgery was in March…i would have to say I would hold off on those rollar coasters until at least after september. That should give everything a good 6 months to settle down in there and find their place. But of course dont just use my judgement…talk to others and maybe ask your sons doctor again. :slight_smile:

yeah, that what I’m thinking six month to let everything heal. Of course, they said in front of Andrew “Oh, he could get on a roller coaster when he leaves here”. I thought like hell he can, but I didn’t know if that was just me being a mom or not.

Hi Janice,
I haven’t had my surgery yet, but both of my parents had brain surgery for tumors, I recall a long recovery period. I would wait a bit before I would let him get on a roller coaster. Andrew is young,
I believe he will heal faster and better because of his age. I’m 50 and my doctor says after craniotomy,
I will be in the hospital for 7 days and he is recommending 4 weeks in rehab. Everybody is different, some don’t need rehab, but I believe all need time to heal. Take care of yourself and try not to worry.

Peace,
Ameenah

I guess a good question to ask yourself would be: “Just how worth it is it to go on a roller coaster right now?” After having a grand mal seizure 5 months after my craniotomy, I was concerned about the possibility of seizures that may be triggered by abrupt movements like coasters, going up in planes, or even just very loud noises or flashing lights. I was especially nervous due to the fact that my grand mal seemed to have come out of no where… On Christmas Day no less! But my thought on it is that it came as a result of the stress of not getting enough sleep and going to multiple low-key, but crowded Christmas parties with family and friends. So about 4 months later, my wife decided to surprise me with a trip to Disneyland before I headed back to work. I had a good time, but was a bit worried the whole time that I may end up having a seizure as a result of all of the over stimulation.

Living in Orange County, I practically grew up at Disneyland and have been there more times than I can count (it could literally be in the triple digits by now!) All that being said, while I made it through the day without incident, it was almost 9 months after my surgery, so everything had had plenty of time to heal. If I had been asked to go to Disneyland even a month or two after my surgery, I would have laughed and said, “Forget it!” and Disneyland rides are pretty mellow when compared to REAL roller coasters.

Anyway, I’m getting off topic a bit here. The point I was trying to make is that seizures or not, roller coasters do cause a lot of jerking and bumping of the head.

If it were up to me Andrew would probably never do anything that would shake his head around, but he’s twelve and is anixous. So it helps to get others opinions that way I know I’m not just being overprotective. Plus it didn’t help with the doctors acting like he could walk out the door and get on a roller coaster. Thanks for your opinions and experiences.

Hello Janice and Andrew.
You are a good Mother Janice always thinking about Andrew and what is best. Andrew must be one of the best boys as he has learned much in his tender years and I am certain that he will “wait for it”, whatever “it” is until the time is right. Perhaps later you shall ride together…The two of you are an excellent team.
HAPPY EASTER !!!

My husband had an AVM craniotomy and a subsequent infection, all told 3 surgeries. Miraculously, he is ok. Six months after the last surgery, we went to any amusement park and rode all the rides. The next day he had a Grand Mal seizure, his first. Don’t do it. When your brain is traumatized by surgery your neurons must find new ways to connect. The over-stimulation and shaking of a rollercoaster is not great for people without brain complications, let alone people who have had altering surgery.

I agree with everyone that is just doesn’t “feel” like a smart and safe thing to do. And I still believe that the doctors don’t really know everything there is to know about brain trauma and what is safe or not safe to do. I think after 2 surgeries, Andrew should just chill for a while and let it heal and settle down. As Jake says, how worth it is for a ride on a roller coaster? I hope he’s not too disappointed!!! It’s these crazy decisions that we have to make that drive me crazy!

You know what? I didn’t think about it when I first saw your post earlier this month, but now I think my 2 cents are worth it. I too was a kid dealing with an AVM at Andrew’s age (albeit a facial one) and since you have read my “story” on my website, you may recall that I was “banned” from (among other things) riding the bumper cars or going on the “free fall” rides at amusement parks. Why those two and not roller coasters? Who knows? Maybe my docs just weren’t specific enough and meant to be all inclusive.

But the thing is, I got over it and Andrew should as well. Why leave something like that to chance? Right? It’s soooo not worth it. And if I could deal with the disappointment as a 12 year old then he will figure out how to deal with it too. Sucks, no doubt. But so do the possible consequences. Find something fun to do that doesn’t rattle your brain around. There are totally alternates…

So I’m going with the “Sorry kid. Been there myself.” But just don’t. I’m such a party pooper! :slight_smile:

I think he’s pretty much come to terms with it. He did decided to go for the pizza (definitely my child) and we thought about which rides he can go on. He is good about not pushing the limits when he knows he shouldn’t.

I was also doing some research on this topic because I wanted to go to Six Flags myself. I followed this topic for a few days to see if anyone has a similar situation( AVM, 4 embos later & 2/3’s is still there 2 months after my last surgery) Eitherway, the same as Jenny I refuse to limit myself from things that I had done all along just not knowing the AVM was there. My mom too was a little bit concerned about me going ( at 23, no less so don’t worry about being the concerned mom!) Regardless, I went- I kept to my normal routine 3x a day of Depakote for my seizures, I didn’t go on any rides that would aggravate that ( strobe lights etc.) but I did go on roller coasters. I chose them wisely though- nothing named “Mind Eraser” was enticing… Although exhausted, I was fine. No seizures or episodes of any kind that day or the next. I think it’s entirely different for everyone, and how your body reacts. I know I didn’t have a craniotomy, and I know it’s better to be safe then sorry, just know that there isn’t always a negative outcome to trying to live a normal life after discovering an AVM.

Lizzie was told “go for it.” Not being able to ride roller coasters was one of her least favorite things about having an avm. Now she’s just waiting until she can easily transfer from her wheel chair into a roller coaster seat. That may take a while.

I wouldn’t suggest Andrew ride any wooden coasters yet…those are the ones that rattle the head the most. The smooth metal coasters with the hang-from-the-top features seem like the best bet for a smooth ride. Isn’t being a parent fun!!!

Kati

OKAY you are so much more courageous then I am…all of you roller coaster riders…Britt loves them too,and I just freak out!!! Now I doubly freak out with the AVM thing!!! But alas she rides them anyways,just mom ain’t looking at all…LOL Lots of praying goes on… Crazy girls!!!

Kati Strong said:

Lizzie was told “go for it.” Not being able to ride roller coasters was one of her least favorite things about having an avm. Now she’s just waiting until she can easily transfer from her wheel chair into a roller coaster seat. That may take a while.


I wouldn’t suggest Andrew ride any wooden coasters yet…those are the ones that rattle the head the most. The smooth metal coasters with the hang-from-the-top features seem like the best bet for a smooth ride. Isn’t being a parent fun!!!



Kati

I had an AVM removed through a crainotomy and was told not to do anything jarring for a year. it takes a year before the bones to grow back together. I have gone on mild rollercoasters about a year out of surgery and was fine, although i have never gone on an upside coaster since my surgery.