Hiking with Chiari

[swatkind]

Has anyone found that hiking aggravates Chiari symptoms?  I had been feeling really good for a few weeks and, without thinking, decided to join my friend on a 4 mile hike across rocky, somewhat steep terrain (1300 ft change in elevation over 2 miles).  I got home that afternoon, settled in on the couch, and got slammed with intense neck/head pain that has been bothering me ever since.  I've also noticed that I've been lightheaded and some of the tingling and numbness has returned.  I suppose it also doesn't help that my job forces me to wear a 30lb backpack all day....

Given the location and nature of the symptoms, it seems a little too coincidental that my pain is not associated with Chiari.  But, it doesn't seem like that simple activity would cause such a flare-up.

[jenshead]

Just a couple of things that helped me... I'm a big fan of keeping a symptom log to help identify triggers.  Also, you can get pretty creative with your exercise, especially once you have identified your triggers.  Start with short walks and work your way up until you find your limit.  Can also try biking or simple yoga.

[selmaS]

  Hi...I know most meds will not affect the pain from Chiari.
What u need to find out is, do u have a CSF obstruction, overcrowding...and other related chiari conditions as they too can affect the out come of surgery.

U may have some period of time where u can actually go for a hike, but it could be the pace, the elevation and the incline that may affect how u feel...u will have to see which is ok for u.....and factor in all the different possibilities.

Plus, b4 u start PT u should find out if u have Ehlers-Danlos...many with chiari do, and it will affect what type of PT u can do.....so , do get checked first.

I will say, most NS's will suggest surgery for chiari if, u developed a syrinx, have a really bad obstruction, breathing issues, swallowing issues, drop attacks...

Chiari in itself is life altering....and yes we do have to make changes to accommodate it to avoid the HA's....

  U need to find a true chiari specialist, see a couple to find the one that is right for u...look at our list of Drs to get some names to research, the list is not meant as a referral.....

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"

[swatkind]

As a side note, the pain is bad enough that 3-4 oxycodones no long put a dent into it.  

[swatkind]

I'm still in the rookie phase of all of this, so I'm learning what causes things to flare up.  I'd hate to give up hiking, but the past week has been horrible.  

I've always had problems with exercising and having headaches afterwards, but I just figured it was because I was out of shape.  I just recently got surgery to correct compartment syndrome in my calves, so I was so excited to return to the world of exercise.  I've done nothing but low-impact exercises for 12ish years, so learning that hiking and running would cause this kind of flare would, as you can imagine, suck.

My regular symptoms come and go, but lately they have been more consistent.  Previously, my lows would consist of about a month of lightheadedness, random body aches, headaches, and a general icky feeling. But, it would go away for few months to a year.  Lately, though, I've had a lot of problems with numbness in my forehead, tingling in my hands, and now pains in the back of my neck.  I think the problem is that I'm use to just pushing through pain (compartment syndrome for 12 years, walked on a torn ACL/MCL for 3 years, etc), and so I just ignore it.  I recently visited a NS who said my MRI from a year ago showed a 6-7mm herniation, and so he wasn't sure whether that was enough to raise a flag or not.  So, he suggested PT and then a follow-up MRI.  The problem is that I'm a student and PT won't fit into my schedule until August.  Sounds bad, but it's true.

I think a turning point was when I was hopeful I would see someone and they would recommend surgery. Obviously surgery isn't the cure all, and there are major risks, but whatever is causing these problems is starting to interfer with my life.  

[selmaS]

  Hi...as Jen mentioned it does differ from person to person, but in general ne strain can cause a flare...most times it will happen during the activity, but sometimes it can occur after the fact.....

As we do things we learn where our limitations need to be to avoid the flares....we can use lists of dos and don'ts as guide lines...but, since we r all diff we will all have a slightly diff list.

  Have u had the CINE MRI to see if u have a CSF obstruction? What symproms do u deal with regularly?

    "selma"

[jenshead]

Triggers differ a lot from person to person.  Walking often gets me, but usually immediately as opposed to afterward.  It's worse if I'm not wearing great shoes.  I would also expect anything involving elevated CSF pressure (such as Chiari) to be aggravated by an increase in heart rate given how connected the two are.  

Are you sensitive to neck movement?  What about high impact activities (running)?  Casually looking around at scenery and having your feet hit the ground are no big deal...but they may be when you do it for 4 miles.