Arnold-Chiari Malformation Support Group

I'm quite lucky I think in that I'm not under any restrictions following decompression surgery.
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.

If you get a laminectomy during your decompression, you are no longer supposed to lift more than 40 lbs..which can restrict many things. Actually, I'm surprised Clea can rock climb...that puts a lot of pressure on your neck because you have to pull yourself up. I was told trampolines were off limits, contact supports (hockey, full contact football, etc). I can no longer horseback ride (the bouncing hurts, but I think thats more of me not off limits in general.) Bike riding, jet skis, etc should be fine..just be careful. Like you said, you are not going to have bone back there and you just have to take more caution than other people. I asked my Dr. if I really have to be worried about not having bone back there & he said that there is a lot of muscle covering the surgical area so it isn't something to worry about..more of a freak accident kind of thing that could cause severe damage. It also depends on your situation. I have had two surgeries and I am still in severe daily pain, so I am still very restricted as many things cause pain..but this is not normal. Good Luck and message me anytime if you have any other questions!

Forgot to mention...no scuba diving, roller costers, skydiving, etc...and anything else that has G Force.

Clea's prob. lucky and has lots of upper body strength to do those things :)

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 :)

I have some questions out of curiousity because I was just diagnosed 3 days ago and still need to go back and see my neurologist. Do most people have multiple surgeries? Also, are most of those activities off limits even if you don't have surgery? I know my dr just told me not to lift a lot.

Thanks!

Clea, I looked back a bit and see that you are dealing with a lot of pain (pain clinic...gabapentin questions)...

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

Jenn, I want to add that restrictions on a person post op, are really the same restrictions PRE op. Even tho you have not had surgery yet, you should also follow many restrictions in order to manage your condition.

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.

Thanks for letting me know :) I have been doing a lot of breath holding letely...i.e. swimming underwater laps. Will try above water now where breathing is involved lol. Underwater the pressure is relieved off of my head and it feels wonderful. Do you think Yoga is okay? Been doing lots of that lately too....

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....

I think gentle yoga is okay, as long as it doesn't cause flares. My good Chiari nurse said, "If it causes flares, stop doing it!"

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

I bike ride and ride on the back of my husband Harley , I wouldnt jet ski or trampolines or roller coaster . You know your limitations . Lifeis not over