Chiari Malformation---anyone?

[torinsmom]

I had(have?) a Chiari Malformation---diagnosed in 2002, decompression surgery in 2003. My only physical symptoms were headaches, back pain and numbness in one hand. It was 15mm and had cut off CSF flow on one side and down to just a trickle on the other side. My NSG was amazed at my lack of symptoms. Due to the danger of hydrocephalus, surgery was recommended. The numbness went away after 2 months, but the headaches have persisted, although in the temples and not in the back of my head, as before surgery. Anyway,my MRIs show my brain is pretty normal now, except there is obvious evidence of the surgery.

So, the first few years, I did not do any rough rides at amusement parks. When we went in 2006, I rode BTMRR and a few like that. Then in 2008, I started riding Space Mountain and Revenge of the Mummy(Universal). I haven't had any returning symptoms. My NSG did not give me any real restrictions at my 1 year follow up and I haven't seen a NSG in 2 years now(he moved). So, this year, I am thinking of adding EE and maybe RnRC. What do you guys think? I am assuming my Chiari surgery pretty much solved the problem and I should be fine. I also assume if I have any symptoms after one of these, I should put them on my no-no list.

Any advice would be helpful. I am about to start a new neurologist to see about the lingering headaches. I am thinking it is nerve pain from the surgery.

 

[Michigan]

Both of my girls have chiari malformation type II with shunted hydrocephalus and they have no ride restrictions. My youngest even has 2 rods, 4 hooks and 14 screws in her spine and was only restricted from roller coasters for 6 months after surgery.

 

[torinsmom]

Both of my girls have chiari malformation type II with shunted hydrocephalus and they have no ride restrictions. My youngest even has 2 rods, 4 hooks and 14 screws in her spine and was only restricted from roller coasters for 6 months after surgery.

Cool! I never had hydrocephalus, just the threat of it. Most things I read online say no g-force, so although I've done mild g-forces, I have been worried about trying RnRC.

 

[Earstou]

There is no cure for Chiari, so you will always have Chiari. Surgery helps relieve the pressure and obstruction, but it never "cures" Chiari.
Personally, I wouldn't try the rides with greater g-forces, but it sounds like my Chiari has been much more symptomatic than yours, including having full body tremors for 5 straight days before I had surgery. I still struggle, and, for me, an amusement ride isn't worth messing my brain up!
But this is a topic that comes up on the WACMA internet support group on a regular basis, and there is always mixed consensus there, too.

 

[torinsmom]

Yeah, it's very interesting the diversity of symptoms. When the chiari was first seen on my MRI, the head neurologist at UNC explained it to me as a "variation of normal". He had me doing nerve testing and all kinds of crap that was useless. It was only after my seeing Chiari on the MRI report that I researched symptoms and realized my back pain could be related to the headaches and numbness. I went to a NSG at Duke and his resident looked at my MRI and said it wasn't a big deal. Then the NSG came in and showed me a "normal" brain and my brain.

My herniation was not as long as some, but it was thick, cutting off almost all the flow of CSF fluid. He was amazed I was not having vision and blood pressure problems, as well as others. Basically, other than daily headaches that I'd had for years and mild back pain, I was totally normal until part of one of my hands "went to sleep". The numbness went away after surgery, but I am still chasing the headache relief train. My NSG did not give me any restrictions after one year, but I had read g-forces were not a good idea. Now I see people recommending against even BTMRR and SM. I have ridden those for years.

I will probably try EE and if it doesn't agree with me, I won't do RnRC.

 

[mommyoftwo08]

Hi,
I had a 13mm herniation and just had surgery from Dr. Oro in January. You are one brave person to even consider attempting any of the roller coasters. I personally would not step foot on them. I was told surgery was not a "cure" so to speak, and ultimately gravity will take back over. For me personally, I see no reason to rush that by riding roller coasters, but that is just my personal opinion. I had no csf flow - completely blocked and tons of symptoms. The majority have been relieved by the surgery, so I feel fortunate enough to have that. We are DVC members and go to Disney almost every 3 months. This is the longest we've gone between trips because of my recovery. Dr. Oro's office says a full year - I'm 6 months now and just need my neck muscles to heal and I think I'll be doing great compared to prior to surgery. I wouldn't be here right now if we hadn't have had the surgery when I did. My breathing problems were so severe.

I'm so glad to hear that you are doing awesome enough to even consider riding! That's fabulous. Just remember that no two Chiari cases are alike, so what may be for some of us, aren't for others. Only you know your body and what you are willing to go thru. Me - I'm fine on ground level waving to everyone LOL!

Best of luck and I hope you have a fabulous trip!

 

[Earstou]

mommyoftwo08, isn't Dr. Oro great!

 

[torinsmom]

I've been doing Space Mountain, BTMRR, and Dinosaur for years. I have been riding Revenge of the Mummy the last two years. They don't seem to bother me at all. I am more worried about the g-force on RnRC and probably won't risk that one. I have my surgery 9 years ago, and haven't had any problems. My headaches are still around, but I was told there could be nerve damage from the compression. I am about to see a new neurologist and see if he can confirm that or not.

 

[mommyoftwo08]

mommyoftwo08, isn't Dr. Oro great!

Yes! Absolutely fabulous!

 

[t_daniels]

I had(have?) a Chiari Malformation---diagnosed in 2002, decompression surgery in 2003. My only physical symptoms were headaches, back pain and numbness in one hand. It was 15mm and had cut off CSF flow on one side and down to just a trickle on the other side. My NSG was amazed at my lack of symptoms. Due to the danger of hydrocephalus, surgery was recommended. The numbness went away after 2 months, but the headaches have persisted, although in the temples and not in the back of my head, as before surgery. Anyway,my MRIs show my brain is pretty normal now, except there is obvious evidence of the surgery.

So, the first few years, I did not do any rough rides at amusement parks. When we went in 2006, I rode BTMRR and a few like that. Then in 2008, I started riding Space Mountain and Revenge of the Mummy(Universal). I haven't had any returning symptoms. My NSG did not give me any real restrictions at my 1 year follow up and I haven't seen a NSG in 2 years now(he moved). So, this year, I am thinking of adding EE and maybe RnRC. What do you guys think? I am assuming my Chiari surgery pretty much solved the problem and I should be fine. I also assume if I have any symptoms after one of these, I should put them on my no-no list.

Any advice would be helpful. I am about to start a new neurologist to see about the lingering headaches. I am thinking it is nerve pain from the surgery.

Both of my girls have chiari malformation type II with shunted hydrocephalus and they have no ride restrictions. My youngest even has 2 rods, 4 hooks and 14 screws in her spine and was only restricted from roller coasters for 6 months after surgery.

Hello! No Chiari here, but I have hydrocephalus. It never occurred to me others here would have it too... Blonde moment, I suppose!

Hello!

FWIW. I'm not supposed to ride coasters. I do every once in a while though.

 

[torinsmom]

I just realized I never updated. I did EE this trip several times and loved it! Then, later in July, I saw a new neurologist who has been a Godsend! She put me on Cymbalta, which is being used for chronic pain now. It has really cut down on my headaches, which has been amazing.

This doctor also ordered my first MRI since 2006 and everything is where it should be. I guess in my case, roller coasters don't really mess with my Chiari. Of course, EE is the most intense I have ever ridden. I may try RnRC this summer, but I don't do anything with big drops or a bunch of inversions.

 

[t_daniels]

I just realized I never updated. I did EE this trip several times and loved it! Then, later in July, I saw a new neurologist who has been a Godsend! She put me on Cymbalta, which is being used for chronic pain now. It has really cut down on my headaches, which has been amazing.

This doctor also ordered my first MRI since 2006 and everything is where it should be. I guess in my case, roller coasters don't really mess with my Chiari. Of course, EE is the most intense I have ever ridden. I may try RnRC this summer, but I don't do anything with big drops or a bunch of inversions.

I loved rnrc. Didn't get any dizzy spells. It's indoors, dark, and the music is distracting.

 

[torinsmom]

I loved rnrc. Didn't get any dizzy spells. It's indoors, dark, and the music is distracting.

I am more worried about the big G force, since supposedly that can make the herniation worse or make it recur. I get dizzy on the tea cups and carnival swings, but not on roller coasters

 

[t_daniels]

I am more worried about the big G force, since supposedly that can make the herniation worse or make it recur. I get dizzy on the tea cups and carnival swings, but not on roller coasters

Hm. I don't know much about Chiari.:\ I know the forces can occasionslly mess with shunts in hydro patients.
Let me check with some internet Chiari friends, if you want.

 

[Panotchr]

I have two daughters with Chiari malformations. One has had surgery the other has not. Our neurosurgeon says no way to roller-coasters and other big rides.
My girls also have Ehlers Danlos Syndrome so they have instability in their necks. One of my daughters is already fused.
I would say no ride is worth your safety and/or health.

 

[t_daniels]

A few Chiari friends seem to agree. Neuro said no coasters .or sky diving, etc.

 

[torinsmom]

I guess each patient is different. I would never do anything like skydiving or bungee jumping, but my recent MRI suggests that riding the Disney coasters hasn't changed the status of my decompression. My surgery was in 2003, and I started riding the smaller coasters again in 2005. EE is the wildest I have done, and I don't plan on doing anything wilder. Truthfully, I am more worried about the danger of having a car accident, since that is what caused me to start having symptoms in the first place.

 

[t_daniels]

I guess each patient is different. I would never do anything like skydiving or bungee jumping, but my recent MRI suggests that riding the Disney coasters hasn't changed the status of my decompression. My surgery was in 2003, and I started riding the smaller coasters again in 2005. EE is the wildest I have done, and I don't plan on doing anything wilder. Truthfully, I am more worried about the danger of having a car accident, since that is what caused me to start having symptoms in the first place.

Very true. Just like with hydrocephalus, (my condition) some peoples ns say no coasters. Some peoples ns say it should be fine. Kinda nuts.

 

[Mikeyto_96]

I have Chiari (7mm) and Spina Bifida...I've been told all my life no roller coasters or high-g rides. The brain and spine are nothing to mess with especially to someone with any type of disability or injury. I would not take the chance.

 

[torinsmom]

I have Chiari (7mm) and Spina Bifida...I've been told all my life no roller coasters or high-g rides. The brain and spine are nothing to mess with especially to someone with any type of disability or injury. I would not take the chance.

My NSG did say no roller coasters from when he discovered the chiari until at least a year after the surgery. This was before the surgery and him seeing exactly what was going on when he got into my head. At that point, I was very close to hydrocephalus, as my herniation was really wide. At night, when I was lying down, so little CSF was flowing that I would get terrible headaches. During the day, I had a small flow on one side.

When the NSG did my surgery, he cauterized the dead brain tissue and my brain "bounced" back into place. He did the normal stuff they do as well(removed a part of the skull and top vertebrate to make more room for my big brain)

At my one year followup, he said I could do whatever felt comfortable to me. He said I would have symptoms if something was too much and I should listen to my body. I didn't ask him specifically about roller coasters. I started slow on rides like BTMRR and had no symptoms. Like I said, my recent MRI showed my brain looking normal except for evidence of the surgery, so it looks like I am one of the people who can do the less intense roller coasters.