Anyone with Chiari? Neck or back problems?

[Disneyenthusiast]

What rides are OK and which must be avoided. It seems like MOST of the rides have the warning about back & neck... Thanks! I am especially interested in the roller coaster types.

 

[Earstou]

I was told by my neurosurgeon (after decompression surgery) that I couldn't ride roller coasters.
I also found out that Dinosaur was very rough, and I recommend avoiding it. Star Wars might be questionable, but I still ride it , but only once a trip. Some people have trouble with the safari jeeps, but I rode near the front and it didn't bother me.
I have ACMI and had the surgery in 2002. I am now looking at possibly having part of my neck fused, and I have problems with dizziness. But I usually do everything except for the roller coasters and Dinosaur. Every one of us Chiarians is different, so different things might bother you, but usually roller coasters are a big no-no!

 

[Disneyenthusiast]

Anyone else? Thanks!

 

[Disneyenthusiast]

If you do ride on something that bothers you, then what? Discomfort? Extreme temporary pain? More surgery? How bad is the downside? I am thinking especially about Splash Mountain which doesn't seem like it is the same type of intensity as Rockin' Roller Coaster.

 

[Selket]

Primeval Whirl in the AK would be out I'd think - that is a very jerky ride. I find BTMRR in the MK to be jerky too - and Goofy's Barnstormer (which is for younger kids generally - I have kids so I ride it with them). I don't know about Tower of Terror - you do feel some pressure as you go up and down but not jerky exactly. Test Track is jerky and Mission Space has the pressure thing. Soarin seems very smooth to me.

I don't have neck/back issues but those are some that come to mind.

 

[JohnnySharp2]

I know it doesn't answer your question really but I got backpain from riding Spiderman at Universal one year but that's a simulator, I was sat on the back row. Next month when I go I'll ask for the front row.

Julie not

 

[bumpysheep]

I have EDS with a possible Chari.

Primeval Whirl I went on almost two years ago and had a really BAD experince. Vomiting, paratheisias, etc. I could hardly breathe, definately stay away from that.

Space Mountian I had a similair experince minus the vomiting but milder symptoms that passed faster than PW.

Other that than I do do much and havent done many of the rollacoaster type rides. I've always wanted to do ToT but I think I wouldn't live through it, honestly. I can handle Big Thunder Mountain on a really good day as long as I don't mind the neck pain after.

 

[Earstou]

If you do ride on something that bothers you, then what? Discomfort? Extreme temporary pain? More surgery? How bad is the downside? I am thinking especially about Splash Mountain which doesn't seem like it is the same type of intensity as Rockin' Roller Coaster.

Well, since with chiari, the brain sticks out the bottom of the skull into the spinal column, anything that whips your head around "could" hurt your brain. Your brain is squeezed into the spinal column along with your spinal cord, which can cause problems with both the brain and the spinal cord. That's possibly why bumpysheep had problems after riding Primeval Whirl and Space Mountain.
Splash Mountain I wouldn't worry about, but SPACE Mountain I personally wouldn't do. Part of my decision is based on the fact that I've had the surgery, which weakens the neck since bone has been removed to take pressure off of the brain (also some skull bone was removed). I don't want to do anything that could damage my surgery area.
My doctor told me no rollercoasters, and he is one of the leading Chiari specialists, so I definitely follow his advice!!!
On my bad days, I have trouble moving my limbs, at times trouble even talking. One time I had full body tremors for 5 days, all for unknown reasons. So I now am VERY careful, and try not to do things that could hurt my brain!

 

[Disneyenthusiast]

Earstou:
Thank you for the follow up. My daughter is having the skull bone part removed, but does not have syrinx and will not have the dura cut. To my knowledge, this means that the "only" incision will not involve her spine (at this time) as much as some folks who have a dura graft and top-of-the-soine surgery at the same time. Would this make any difference in how you would look at the situation? Who did your surgery, if you don't mind sharing. Thanks.

I'm not trying to be stupid, just to see if there might be a handful of OK things that might be lumped in with roller coasters generically. For example, Tower of Terror. I went on it and thought it was very smooth, but I don't know if there is another reason to avoid it. I am just trying to get a general sense of what people have experienced to clarify and explain the risks.

Thanks again for the feedback here.

 

[Earstou]

>>> Would this make any difference in how you would look at the situation? Who did your surgery, if you don't mind sharing. Thanks.<<<

I really can't answer your question concerning your daughter. I would recommend joining the WACMA support group and asking for advice or other's experiences. There is a parents group, farther done on the online support page at WACMA.com, which might help you the most. I'm not familar with children's issues when it involves Chiari.
Things like how much do we protect ourselves (or our children) have been discussed. Do we say no wild rides and wrap ourselves in cotton or do we experience life at it's fullest??? There are people at both extremes with many in the middle! It comes down to a personal decision. I understand that it's harder for you because you can't feel what your daughter is feeling, and have to make the decision for her. When is your daughter's surgery and how old is she?
I forgot about Tower of Terror earlier! I used to do TOT until they changed it to multiple drops. I just felt like the chance of damage was increased and didn't feel comfortable doing it anymore. Plus it didn't help my dizziness at all!!
Dr. Oro did my surgery. His website is http://www.chiaricare.com/.

 

[Disneyenthusiast]

Thanks for the info.!

 

[spiceycat]

mother has problems

avoid - all R&R period - don't take a chance, (believe me when she is a teenager she will do them)

also test track (Epcot), star tours (studios), body wars (if opened - Epcot), Dinasours (although I loved this one- AK), winnie the pooh (this one jerks badly - MK), teacups(MK)


rides that are fine
MK
Haunted Mansion (liberty square)
Peter Pan (fantasyland)
It a small world (fantasyland)
Dumbo (fantasyland)
Bluzz lightsaber (tomorrowland)
tomorrowland transity authority - this looks boring - but I love it....(tomorrowland)
Jungle crusie (adventureland)
pirates of the carr (adventureland)

all the shows are fine...

Epcot
Soarin'
Spaceship earth
believe it or not - Mission:Space - mother loved the take off - when most people get sick....
Journey into Imagnation
listen to the land
there are no rides in living seas
world of energy
norway - maelstrom
Mexico -

all the shows and movies are fine - you have to stand for Canada & China

Studios
the great movie ride
tower of terror
there are more shows here - okay this is not my favorite park and I don't know alot about it....

AK
safari - yes it jerked some - but mother could handle it
this place also has alot of shows...

here is the guide from the home site of the dis
http://www.wdwinfo.com/wdwinfo/themeparks.htm#HM-themeparks-nav

 

[LuvN~Travel]

Our daughter had the decompression surgery at age five, so that may be why she is able to ride any of the rides at the world. (she is seventeen now). I think the only time she even had a hint was when we rode RnR twice back to back last year. She did come off with a headache afterwards. Other than that she's never had a problem with riding. She also has rods in the back for Scoliosis and that hasn't limited her riding at WDW.
However, we don't let her ride the rides at the local fair in the fall that let you 'hang' upside down any. As long as the ride is smooth, aka, RNR, she will be fine. But we make sure it's nothing that will stress her back out if she gets stuck upside down.
Kim

 

[Disneyenthusiast]

Surgery is now behind us! Our daughter is now home and in recovery mode. The main thing that seems to be on her mind is how her enjoyment of Disney may be affected. She is young and these thing matter! They are planning a trip next year. I appreciate any additional feedback that has not yet been offered.

Her follow up appointment is in 2 weeks and she will try to ask the question there also, but so far she never even met the neurosurgeon who did the surgery and I don't really expect that she will. It is hard to take a generic "no roller coasters" from an assistant who may not even know the particulars of her surgery. She had decompression without opening the dura and no syrinx.

My main concern is whether there is any chance that she could damage herself by riding. I know that she may be uncomfortable if she makes a bad decision, but can she hurt herself long term?

Thanks again for all of your help!

 

[Disneyenthusiast]

Bump.

 

[CommunicoreGal]

I've been on these boards for at least a couple months now and this is the first time I looked on this particular board.

I was diagnosed with ACM and SM in Nov 2000 and decompressed and all the wonderful things that go with it in December 2000 at the delightful age of 19.

Being this young all you want to do is ride rollercoasters.

My first trip to Disney was in January of 2005 at the age of 24. I didn't ride anything that I thought would whip me around or make my neck snap back forth or any other way that I didn't want it to. Another trip I decided ok I'll try space mountain, big mistake. I hurt my neck and got stuck during the fireworks. Ugh, what a pain.

I always have my fiance go on the rides before I do. He tells me whether I should even consider riding or not.

I also agree dinosaur and star tours didn't feel so good afterwards.

Michelle in MA
ACM/SM
Decompression/laminectomy C-1 and craniectomy.
MRI's back to "Normal" after surgery

 

[Disneyenthusiast]

Hi Michelle,

My daughter is 23, so you know what she is up against. It sounds like you have tried a few things. What did not bother you (that a 23 year old would want to do)? Have you tried Tower of Terror or Splash? How about the less intense Mission to Space? Kali or the Safari? Details please. Thanks!

 

[CommunicoreGal]

Hey DisneyEnthusiast,

First let me say that I'm sorry that your daughter has to go through all this. This is a tough thing to deal/go through. How are you dealing with all of this? I know my parents had a very tough time. If you ever want to talk etc let me know and I'll get you my email address.


I just read this post at 10:20 pm on Tuesday...Give me till tomorrow night and I'll let you know all of the rides I've tried and have or haven't had a problem on.

How many months post op will she be when she goes to Disney? That also needs to be taken into consideration. The key is to do as little as possible at first and heal. I was told by my Neurosurgeon not to lift, push, or pull anything over 10/20 lbs.

I also agree that you should join WACMA. There are a lot of great people there and that is what I joined when I found out I had Chiari Malformation.

Where are you located?

I will get back to you ASA I can with all the ride info, as you know there is a lot to do in Disney.

I can off the top of my head say that I didn't have difficulty with Tower of Terror, or the safari.

 

[Disneyenthusiast]

Michelle,

My daughter is now out of the hospital. It's REALLY hard watching someone you love have to go through this! You wish it could be you instead and spare them. They're always your kids, no matter how old!

They are planning a trip to Disneyland next summer, so she will be 1 year post-op. (We are the ones planning on DW this spring, so I am using this forum for ride feedback since this is the board I frequent.) I know that Dinosaur & Indiana Jones are different, but figure they are close enough. The majority of the rides are the same (or close).

I really appreciate you taking the time to help with this! Thanks.

 

[Disneyenthusiast]

Bump.