Brain surgery and rides

ElishaConway

Earning My Ears
Joined
Aug 2, 2012
My dd Elizabeth is 8. She had a Chiari decompression surgery on June 1st to remove part of her cerebellar tonsils. Would there be any rides she will need to stay away from?
Thank you,
Elisha Conway
 
I would definitely stay away from aerosmith rockin roller coaster, but I' not an MD. I'd look at the rides she would like to do and ask her doctor(neurosurgeon) specifically. he/she probably has a PA that will answer your questions.:)
 
There is a list of attractions with warnings from Disney in post #23 on page 2 of the disABILITIES FAQs thread.
I would start ith that list and take it to her doctor to discuss.

You can find that thread near the top of this board or follow the link in my signature.
 
I have Syringomyelia with a Syrinx that is blocking 82% of my CSF flow.......I am well aware of issues with Chairi Malformation.

Did she have a PFD?
What issues (if any) does she have with weather or air pressure changes?
How much range of movement does she have post surgery?
What aggravates the surgery sight/scar tissue?


If you would like to PM me the reply I can certainly give you a lists of ones I avoid or would depending on your reply.;)

Blessings-Cyn
 
i've had a suboccipital craniotomy for my brainstem tumor, and they really mucked around with my cerebellar tonsils. the one ride i absolutely cannot tolerate ever again is soarin'. i made the mistake going on 5 years post surgery, and the feeling of zero balance left me pitching forward the whole time. my dh and ds had to lock arms across me to keep me from rolling forward. i shut my eyes almost immediately, but it didn't help since the initial scenes screwed up my vision-balance-perception. i won't do rnr coaster either for obvious reasons and spaceship earth is a killer because you have nothing to support your neck at that sharp angle.
 
Space Mountain gives you absolutely no neck support. It hurt really bad and it even pulled the pony tail holder out of my hair.
 


Ask her doctor and be very specific about the rides you are concerned about. My friends DD has had that particular surgery as well as several more and she is quite limited on the rides she can go on at WDW. No coasters, simulators, any thing the jerks you around etc. BTW- She will loves and has a GREAT time at WDW:goodvibes
 
My dd had her Chiari decompression surgery 2 years ago at the age of 6. I specifically asked her neurosurgeon about roller coasters and he said she is fine to go on anything she wants! We have been to Disney 3 times since her surgery and she has never had a problem. She's done Barnstormer, Big Thunder Mtn hundreds of times, etc. She has never done Rockin' Roller Coaster or Space Mtn so I can't tell you about those.

Good Luck!
 
The other thing to keep in mind is that your daughter's surgery is going to be relatively close to the time for your trip that you posted on another thread.

Some people recover more quickly than others and some surgeries may be somewhat different. So, you really need to discuss your child's particular situation with her doctor.
 
I would be better safe than sorry and assume she won't be able to do most if not all rides with warnings. The one exception would actually potentially be Soarin' if she's not showing signs of vestibular system problems. (I know a previous poster said she had problems, but I suspect that's one of the places where it's going to be incredibly different person to person.)

I had Chiari decompression surgery along with a c2-> skull fusion just over a year ago at the age of 26 (all part of one surgery, not just to treat the Chiari). I also had a surgery on my lower spine the day before so I am assuming my overall surgery experiences were more extensive than your daughter's. I also have a genetic connective tissue disorder (Ehlers Danlos Syndrome) so I'm guessing I'm overall more complicated than she is. That said, as an adult it means my skull has at least stopped growing and the fusion means my skull shouldn't slip down to cause similar problems (my Chiari was partially such a problem because of the EDS) in the future.

Pre-surgery I cleared my schedule for pretty much 3 months afterwards. It turned out that I went through the initial round of healing pretty quickly so at the 3 month mark where I figured I might be starting to drive, I was at a conference in Orlando (although not at WDW) that I hadn't expected to be able to attend. At that point I don't know that I would have felt comfortable going on *any* ride at WDW unless I could be in a well padded wheelchair with good back and neck support during it. At 4 months out (so about the time lapse that your daughter will have) I actually started having a return of some of the symtoms that had gone away post-surgery (we don't think they were from the Chairi now as we've controlled them through medication, but had no clue at the time they were coming back). At a year out, I'm glad I had the surgery and I think it has improved my life, but I don't ever expect to be able to ride a roller coaster again (and I loved many roller coasters). I'm sure my neurosurgeon would say no based on the EDS alone so I'm not going to say that your daughter's surgeon is going to say no forever, but I think at 4 months out you need to plan for him to say nothing, but the most gentle rides. You may also need to plan that she'll have less energy than a normal 8 year old because her body will still be doing some healing.

I know I've painted a not great picture, but hopefully I'm giving you a worst case scenario, rather than what your daughter has to deal with. Since I was an adult, my experience may be completely different. If you have any contact with parents of other kids who've had Chiari surgery, you may want to talk to them. Facebook may have groups that could give you advice. (I know that there's a Chairi in Connecticut facebook group so if there's something as specific as for people with Chiari in a single state, I would expect there to be a group for parents of kids with Chiari). If by some strange coincidence your daughter happens to have EDS, feel free to PM me and I can suggest some groups that deal with head/neck surgeries in people with EDS and some of the members have young children who've had Chiari surgery (the kids also have EDS).

Sorry for the negative sounding post, but having spent 20+ years where we didn't even know I had Chiari and then the time between diagnosis and surgery (which was actually fairly short, but at that point I was feeling pretty desperate for relief), I can say that your daughter is far better off having the diagnosis and the surgery now as it should hopefully save her years of pain and neurological problems down the line!
 
Another Chiarian here. :goodvibes
I was told healing takes 6 months to a year with this surgery, so I would recommend only gentle rides at this point in time for your daughter. I waited a year after my surgery before I attempted a trip to WDW (it was my reward for going thru surgery!).

My neurogurgeon, who is one of the top Chiari docs in the world, told me no roller coasters. He also said no to TOT.
Keep in mind that since the neck muscles are cut during this surgery, anything that affects the muscles may cause pain. Good head support is essential. I had my surgery 11 years ago and still need good head support.
 
Please discuss this with your neurosurgeon. I just came back from WDW. All doc would OK were C of Progress, Haunted Mansion, Small World, Great Movie Ride, Backlot Tour, Ellen's Energy Adventure, Nemo, The Land. I could also do all shows & 3D stuff.

Other rides - even Pirates - were a no go. Please be careful.

Have a great trip! :goodvibes
 
My dd Elizabeth is 8. She had a Chiari decompression surgery on June 1st to remove part of her cerebellar tonsils. Would there be any rides she will need to stay away from? i had a brain aneurysm, and my neurosurgeon has advised against all roller coasters! check with DR. Thats why they make big $$
Thank you,
Elisha Conway
 

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