Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
VP shunt surgery meant know driving (but hopefully only another 2 months before I can start again.)
I've been horse riding, bike riding and have just started indoor rock climbing and that is after 5 operations.
So maybe it's just me and my consultant but I don't believe there are many restrictions.
The roller coaster/sky diving thing won't be an issue with me. Actually Chiari is a great excuse for me to use to my husband who always pressures me to go on roller coasters with him :)
Thanks for letting me know about the muscle covering the area. That does make me feel a bit better :)
Thanks!
IMHO, you are dealing with a lot of pain because of your activities.
I hate to say that, especially to someone so young with so much athleticism.
A true expert would tell you not to rock climb, that is for sure. You are craning your head UP, correct? You are lifting the weight of your body, correct? All of the things you would do rock climbing I can only imagine would cause the worst of flares.
Clea, you might have a lot less pain and neuropathy if you did not do these activities.
It's certainly okay for you to make the decision to deal with the trade off, ie pain in exchange for the adrenaline high of doing physical fun activities. I sure "get" that!
But I hope you are careful not to suggest to others that these things are okay for others with Chiari, pre or post surgery, can do. And you were, because you said it might be "just me"....but believe me, there are MANY restrictions!!
Please do not think that you will come out of surgery all fixed up and raring to go and able to do all the things you used to do.
Horseback riding, "maybe," but only on an old gentle horse and at a walk. Even then, the movement of the horse might cause you flares. If you fell from that height, think of what would happen...
NO skydiving, as was said, no roller coasters. Jet skiis? I would think absolutely not unless you were just cruising around slowly.
Anyway...that's my opinion...I'm no expert. But there will indeed be many restrictions post op and in your future. Lifestyle changes will help so much to create a "liveable life"... kad723 has a good handle on things.
here4ya
Don't forget to avoid those "valsalva manuevers," ie breath holding (grunting...difficult bowel movements...take stool softeners if necessary, esp if you are taking narcotics for pain....heavy lifting means breath holding..) things like this create more pressure in your brain...
more thoughts
H.
MSSarah...I would post a thread with just your queation to get multiple opinions. I honestly don't know and have been wondering the same thing and why....
There are some extreme positions, or even "downward facing dog" that probably is going to cause flares and of course, any breath holding bad stuff...
I always hate to be the bearer of bad news...but...it's best to know that you can live a lot better life by implementing lifestyle changes. That doesn't mean you'll avoid surgery...but you WILL avoid a lot of pain and suffering by avoiding certain activities.
take good care!
here4ya