i have no idea what is going on with me yet because they havent scheduled an appt with the neurosurgeon, i leave for Sea World and Disney tomorrow. They think i have Chiari 1 malformation and i was advised not to do anything that would cause me to fall down...what is your experience with restrictions am i at risk for something really bad if i ride a moderate roller coaster or ride in a car too long. the pain has been increasing but nothing i cant handle, its mostly the numbing and tingling then the creaking in my head that drives me nuts the pain meds keep the rest at bay so i can work and go about my day..my biggest fear is damaging my cord is that even possible? am i just driving myself crazy or is this something to be legitimately concerned about? thanks for being here i am glad to find somewhere to vent my concerns and crazy:)
Well, unfortunately, roller coasters are a big no no. You want to avoid any quick jerking actions with your neck. As for riding in a car that should be fine. I hope you can still make the best of your trip!
Roller Coasters, Bungy Jumping, Sky Diving, all is a NO NO. I don't even fly in smaller planes anymore that does not stabilize cabin pressure. If scuba is something you like, you should not go down to far either. Basically anything that pulls, jerks, flips and causes pressure is off limits.. Anything that can reach G force is a ABSOLUTELY NOT!
All of those things can worsen symptoms. Beleive me, none of those things are worth your health. Because when symptoms get bad, you will regret those one minute rides.
we are mostly going to see the marine life for my 10 year old, the water park for my 15 year old and the princesses for my 3 year old the rest of the time i am hoping for some real sunshine relaxation. I love roller coasters and didnt plan on riding them i just dont know the full extent of this and risks involved. when i was diagnosed with DDD with the bulging discs and bone spurs my doctor said i wouldnt break if i went on them i would just increase my pain level. my main concern now is permanent damage to my cord, i really appreciate everyones feedback. I promise no rollercoasters now if i could just figure out how to pack the sunshine and bring it back to michigan:)
Have fun! Luckily both Disney and Sea World have lots of fun things that are not rides. The no roller coaster rule is the worst. I loved roller coasters. Since my surgery was in Cincinnati we originally planned to go down the day before and hit Kings Island for one last ride but it turned out I was just too nervous and missed my chance!
I was going to just go for it anyways but i chickened out too. Too big of a risk. We had a blast anyways. I did all ride i could that were not with G Force:) fed dolphins, laid in the sun and watched my 3yr olds face light up when she met Cinderella. Much needed vacation i feel better and ready to go. First appt is scheduled for Tuesday at 10am wish me luck
Lucky! I love Sea World.... Wish we could go to California and spend some time there. As for roller coasters, I for sure wouldn't! Even if I didn't have Chiari, I hate roller coasters. lol But jerking your neck around is probably not a smart idea - whiplash and bad car accidents can CAUSE Chiari so I don't think it would be wise for someone who already has it!
Good luck, have fun, and soak up that sunshine!!
Katrina W.
I had my appt yes they are recommending surgery my MRI shows 7mm past where my brain tissue is supposed to be..ugh i just cant get over this it makes my head hurt even worse thinking about it. I am not fully confident in that surgeon i would like someone who specializes in this surgery. Anyone have surgery and found great relief without complications?
We are big Walt Disney World fans, we usually go at least once a year.
I was given no restrictions post-op. I had a text book recovery. However, from my experience any ride that jerks your neck is going to cause pain, at the minimum. Even if you take your brain out of the equation, your neck just isn't the same after this kind of surgery.
I made the mistake of riding Space Mountain two years post-op. I paid for it the rest of the day. You live, you learn.
My advice is not to take the chance. I thought I was all better and ready to do pretty much anything. There are just some things that I cannot do any longer. It sucks, but it's our reality.
Broken,
YES, well...partly. I also had a 7mm herniation (no syrinx). I had a textbook surgery and recovery, Aug 19, 2009. Left the hospital two days later (on my 43 birthday) and had no complications. NONE.
Headaches gone! Neck and arm pain GONE. I didn't even go back to my NS at the one year post-op mark because I was so over it. I didn't give Chiari another thought until about 6 months ago when I started getting the headaches again. And the numbness and tingling in my arm and hand. And occasional difficulty swallowing.
BUT, I'm not jumping the gun yet. I was told that they saw a few herniated cervical discs back before my surgery and that I might eventually need to deal with them if they didn't heal on their own. I have an appt with my NS on Feb 5thto discuss my recent symptoms. I am praying he tells me it's my discs that are causing this trouble. If not, I'm going to be really bummed.
I still feel like the surgery was worth it, I had total relief of almost every single thing this stupid Chiari caused me for 3 years. The only thing I didn't get back was my hearing. Which I was told was a long shot anyway. I still remain cautiously hopeful.
Not sure if my post helps you or not lol.
broken1977 said:
I had my appt yes they are recommending surgery my MRI shows 7mm past where my brain tissue is supposed to be..ugh i just cant get over this it makes my head hurt even worse thinking about it. I am not fully confident in that surgeon i would like someone who specializes in this surgery. Anyone have surgery and found great relief without complications?
before my decompression I was advised not to do anything that caused the shock type headaches but what caused them was laughing,or doing anything really.I would often be in denial of the reality of what was actually going on and convince my self I could do things like normal I actually was riding a horse while I was having a day where there was a major attack happening I look back now and think what was I thinking cause the pain was paralysing and would cut of my breathing I could have very well fallen off the horse but I guess I got lucky.before my op I would do everything that I wasn’t suppose to now after my op hmmmm I definetly think twice about cartwheels,horses,rides etc it scares me cause I get worried I might pop something.But that’s just my experience.Im not sure if damage to my spinal column happened pre op but I use to jump of very very high cliffs into pools of water and if it caused me pain I would just be like woahhhh! ok that’s a thing I cannot do Ii found it to be a bit of trail and error.Have fun at Disney world!