Chiari Malformation - what rides are unsafe?

[kathleendsm]

There was another Chiari thread recently where I posted that my 4 year old son was just diagnosed with Chiari type 1. We're waiting to get into a neurosurgery consult, and his pediatrician doesn't know very much about this condition.

We're heading to WDW in 3 weeks (yay!) for Thanksgiving. Does anyone have an idea of what rides might be unsafe for someone who is pre-operative? I know roller coasters are out and most likely rides like Tower of Terror. Are there others that we should be sure we avoid with him? He's non-verbal (apraxia of speech, chromosome abnormality), so it's tough to know what might be causing him discomfort unless he's crying. Obviously we'll ask the neurosurgeon, but I don't know whether we'll get in for that consult in the next few weeks.

Thanks for any advice!

 

[Michigan]

There was another Chiari thread recently where I posted that my 4 year old son was just diagnosed with Chiari type 1. We're waiting to get into a neurosurgery consult, and his pediatrician doesn't know very much about this condition.

We're heading to WDW in 3 weeks (yay!) for Thanksgiving. Does anyone have an idea of what rides might be unsafe for someone who is pre-operative? I know roller coasters are out and most likely rides like Tower of Terror. Are there others that we should be sure we avoid with him? He's non-verbal (apraxia of speech, chromosome abnormality), so it's tough to know what might be causing him discomfort unless he's crying. Obviously we'll ask the neurosurgeon, but I don't know whether we'll get in for that consult in the next few weeks.

Thanks for any advice!

You can always call the doctors and let them know you are going and would like advice and they will give you general info over the phone

 

[SueM in MN]

there is a list of attractions with warnings on page 2 of the disABILITIES FAQs thread. that thread is near the top of this board or you can follow a link in my signature.
that list will give you a starting point for the attractions WDW has put warnings on.

since he is only 4, he may be too short for some of the wilder rides too.

Also, since he is non-verbal, it would be important to think about some of the rides that might be scary for him, since he can't tell you they are scary.

 

[JerseaShell]

There was another Chiari thread recently where I posted that my 4 year old son was just diagnosed with Chiari type 1. We're waiting to get into a neurosurgery consult, and his pediatrician doesn't know very much about this condition.

We're heading to WDW in 3 weeks (yay!) for Thanksgiving. Does anyone have an idea of what rides might be unsafe for someone who is pre-operative? I know roller coasters are out and most likely rides like Tower of Terror. Are there others that we should be sure we avoid with him? He's non-verbal (apraxia of speech, chromosome abnormality), so it's tough to know what might be causing him discomfort unless he's crying. Obviously we'll ask the neurosurgeon, but I don't know whether we'll get in for that consult in the next few weeks.

Thanks for any advice!

Hi There!! My 5 yr old was just diagnosed with Chiari I Malformation as well. We live in NJ and been to 4 different Neurosurgeon consults this month who all recommended decompression surgery sometime in the next few months. 3 of the doctors gave absolutely NO restrictions in Disney (including Space Mountain, Runaway Train, Tea Cups Splash Mountain, etc). The 4th doctor said that only Roller Coasters like Space Mountain should be avoided but my son is only 41 inches so he isn't even tall enough to ride. We'll be there starting Nov 3rd returning Nov 11th if you want to know how it went. I'm getting the stroller as a wheelchair sticker and a guest assistance pass as his legs fatigue quickly and he has sensory issues where we need a quieter entrance and quick escape for certain attractions (took him 2 years ago). I highly recommend the Facebook page Conquering Pediatric Chiari if you haven't already found it! Good luck and my thoughts are with your consults. Hope this trip helps get your mind off of "Chiari" as I know it has completely taken over our lives after the diagnosis so I can't wait for Saturday to arrive!

 

[DelanaAndKyra]

Hi There!! My 5 yr old was just diagnosed with Chiari I Malformation as well. We live in NJ and been to 4 different Neurosurgeon consults this month who all recommended decompression surgery sometime in the next few months. 3 of the doctors gave absolutely NO restrictions in Disney (including Space Mountain, Runaway Train, Tea Cups Splash Mountain, etc). The 4th doctor said that only Roller Coasters like Space Mountain should be avoided but my son is only 41 inches so he isn't even tall enough to ride. We'll be there starting Nov 3rd returning Nov 11th if you want to know how it went. I'm getting the stroller as a wheelchair sticker and a guest assistance pass as his legs fatigue quickly and he has sensory issues where we need a quieter entrance and quick escape for certain attractions (took him 2 years ago). I highly recommend the Facebook page Conquering Pediatric Chiari if you haven't already found it! Good luck and my thoughts are with your consults. Hope this trip helps get your mind off of "Chiari" as I know it has completely taken over our lives after the diagnosis so I can't wait for Saturday to arrive!

Hi there, we are going to be at Disney Nov 24th-Dec 1st. My daughter is 4 years old and will be 3 months post op from chairi decompression with duraplasty. We were originally told there would be restrictions but her height at this point makes it easier, something like the tea cups for example is iffy because if spinning to much the g force could cause a headache. We are meeting with the surgeon for a post op appointment on wednesday so i can get more info on restrictions. I will post her then when i get the list

 

[kathleendsm]

Thanks so much to the experienced Chiari parents! We were at the neurosurgeon on Friday, and he's ordering a 3D CT scan before we decide on decompression. DS apparently also has craniosynostosis (something that I knew deep down and spent years trying to get his doctors to take seriously to no avail), but given that he's 4.5, the surgery to correct that would be exceedingly difficult.

And of course, in the whirlwind of everything, I forgot to ask the surgeon about Disney ride restrictions. I think, though, that we're going to be conservative. We tend to go to WDW at least once a year, so I'm not worried about him missing anything that he won't get a chance to see again. He's also very hot and cold on thrill rides, so I don't want to take a chance of him getting too scared. As SueM accurately said, it's hard for him to say what's scary to him, although we tend to find out if he starts wailing!

JerseaShell, we also get a stroller as a wheelchair GAC stamp, along with another. It makes things a lot easier to give DS a place to rest, and he tends to get pretty anxious just standing around waiting. He walks well now but does have balance and stamina problems, so even though he uses strollers VERY rarely we really depend on it in WDW. We're leaving in just over a week and I am sooooo looking forward to it and to not thinking about Chiari, craniosynostosis, apraxia of speech, or anything else too serious for a week!

 

[Cassandy]

My son is 4 years, 5 months, and we've been to Disney World 4 times. He's two years post-decompression (boney only), two years post vp shunt (and a host of other issues).

We've found that he does well on rides that are smooth and flowing, like Dumbo, and we've even been on Barnstormer (which he loved!), but he had some issues with rides like Winnie the Pooh and Small World (when the boats bump each other hard at the end), which gave him a bit of a migraine.

We mostly just have to be really careful about keeping him cool, rested (we use a stroller 90% of the time, and always bring it to restaurants and in lines), hydrated, and with sensory breaks (we don't usually do more than two hours in a park, and we spend hours every day in a dark hotel room to give him a sensory break). We're pretty hardcore on the rest, because in 2011 he ended up having a breakthrough seizure in front of Big Thunder, and we ended up in an ambulance to the children's hospital in Orlando... yeah, not our best MK day. He'd just gotten too tired, and a bit dehydrated, and that caused loads of issues for a while.

My suggestion is to make a schedule of the things you need to do to keep him healthy (water every hour, one hour in the sun, one hour out of the sun, breakfast at 8:00 am, etc.) and stick to that schedule while at Disney. It just makes life easier, and then you have the flexibility to enjoy going out, while still keeping focus on his health.

We did that, it really worked for us, hope that helps. Cheers

 

[NDMOM]

My daughter had surgery in January for Chari and total Cranio at age 14. Initially we were told to not go on any rides that were jarring, but after her last MRI's a few months ago, he said we could do most things - exceptions of side to side or high G force type rides like Mission Space. We will be there starting Nov. 9th and plan to let her do just about everything. This will be our 6 th trip to WDW and the first since her surgery. She is now 15 and she does need more surgeries on her spine, but the benefits she gets out of thrill rides outweighs the risk.