Hello my fellow zipperheads, my name is Nick and I’m new to this group, but definitely not new to chiari. I had my decompression surgery in Orlando by Dr. Trumble (he’s a pediatric neurosergon who specializes in Chiari, but does adult surgery for severe cases). Before surgery I hade an extremely symptomatic case of chiari with a 14mm herniation and had my decompression done in Oct 2014. Post op recovery was within the typical or average recovery in the hospital, I had a full decompression done (Removed part of the skull, part of c1 and c2, dura patch ect.). Post op, I had hope…until the 8 month mark when my symptoms returned. For a brief moment in my life I felt normal…like I could do anything, inexplicably better.
Anyways, fast forward to yesterday when I went to the Universal parks for my fiancé birthday. I rode all of the rides with seemingly little or no problems. The only thing I thought was weird os that after some of the rollercoasters (especially the ones where I lost my vision or saw “stars”) as soon as I stood up to get off the ride, I would stumble or keel over as if I had no balance at all, but only for a breif second or two. I figured everything would be fine and kept pushing on, more rides and rollercoasters with my lady. Everything seemed okay, but then it started pouring down rain, the park was closing, and I was extremely cold. This is when things went down hill fast, because the colder I’d get, the more I’d shiver, and then the muscles in my neck, back of the head, shoulders, and mid back got really tight and started burning like they were on fire. The tighter the muscles in my neck and shoulders got, the worse my symptoms would get. It started with the burning sensation in my neck and shoulders and quickly progressed into double vision, nausea, chiari headaches (the painful bastards that you can feel in your hind brain that move to the front almost at the same time or together), loss of motor control from the waist down (not severe, just the inability to walk without my knees giving out every other step), and dizzyness. Once we got back to the car I was able to sit down and get warm, and the symptoms subsided a bit but my neck was so stiff I couldn’t turn it without a fight (reminiscent of being a couple weeks post op). We made it home safe, I took some meds and went to bed.
I woke up this morning with a headache similar to waking up post op. I’m not dizy, but feel heavy fatigue, nausea, blurry or double vision intermittently, and can keep my balance as long as my eyes are open. I also loose my vision or see stars when standing from a squatted position (sometimes even a seated position). I’m just curious if any of you have experienced anything like this after rollercoasters or theme park rides, especially 2 or more years post op. My NS and neurologist said everything should be fine and I shouldnt have any issues, but clearly this isnt the case. Any info you guys might have to contribute would be extremely helpful. Thanks so much for taking the time to read this and I hope all of you are well.
Thanks again,
Nick
Hi Nick
Given the recentness and severity of your symptoms, I hope that you have found the time to visit a hospital and clinic to make sure that everything is okay.
Personally, I am going to wait on any advice!
Good luck with your recovery
I would probably wait for a bit like Gabby says but if you’re really concerned about it I would suggest getting a MRI done to see if things are supposed to be how it should be after the surgery. Wishing you the best!!!
Oh no hun no roller coasters! The gravity can pull on our herniation surgery or no surgery and we have been through so much why take the chance.
Hi I agree! No crazy whipping amusement park rides, bumpy hay rides, jerky motorcycle rides, fast bumpy sledding, sports where you could have bad falls or head bumps, heavy lifting, or straining. Tina
My surgeon said riding coasters is fine. I have not been to one since my surgery. I have given up so much in my life because of the constant pain. I am several medications to deal with the other underlying issues. My poor husband repeatedly asks me to do stuff who irritates me but I know he is doing the right thing. I plan to get in a routine to see if this helps me. My symptoms are starting back. Coughing hurts and headaches are becoming more often.
Hello Nick, I hope this finds you having a good day. Me personally I limit certain activities, you are braver than I. Heck, the brakes being hit too hard in the car can set me off with an episode. I was wondering, have you gotten yourself to a doctor after this?
Goodness!!! I ‘see stars’ simply by standing up! For me, the brain stem has been damaged badly enough from the compression - blood pressure plummets easily. I had to take a Tilt Table test that proved it - by changing the angle of the table, my blood pressure still stayed bottomed out on the floor. It’s called Orthostatic Intolerance - when something as simple as standing up makes your head swim! I also find that any adreneline activities can REALLY drop the BP post-haste! I’m not surprised that a rollercoaster ride would send your BP silly-nilly!! Take it easy on your CNS… (your body’s electric system - it’s a bit damaged.)