The neurosurgeon and the neurologist that saw me both agreed that I could continue running and could keep living my life as normal. As I posted before my Mom did some research with a few doctors and they recommended that I stop running. I started running 4 years ago, but got more serious about it these last couple of years, I've ran 2 half marathons. And its been a life saver for me, it helps me release my stress and it makes me feel energized (I worked outside the home and have 2 kids and a husband that keep me so busy all the time)
The running doesn't trigger my headaches, specially now that I am running first thing in the morning to avoid the heat here in Texas!
So far the only symptom I have with the Chiari is the headaches. They are throbbing on the left side of my head, behind my left eye.
What is your experience with exercise, specially with running?
Most times when running it feels like my brain is bouncing around in my head just as it does when on the trampoline and feels very uncomfortable and leads to headaches. If it gives you no problems, an you enjoy it then you should keep it up.
I would definitely ask a Chiari experienced physician that question. Preferably one that knows your specific medical situation. I have friends that are pre surgical CM Athletes, but I also know Members & studies that view CM can be made worse by accidents.
When I had my 2nd surgery with Dr. Oro, I asked him about jogging. Here is what he told me. "Jeff. I recommend no jogging/running until your 1 year post op (if everything goes well). Now, I have had patients that started running before then and they have done just fine. I have also had patients that proved me right."
Needless to say, I have not ran or jogged yet, but hope to one day. Everyone is different. I would definitely listen to your body. I know Chiarians who run marathons and I know Chiarians who can't do more than walking because they feel like their brain bounces all over the place.
I had surgery in December 2009 and started running in March 2010. I have done several half marathons and run 20+ miles a week. I just added body pump/weight lifting twice a week. Yes I still get headaches and days of pain, but I am better over all for leading an active lifestyle. There are days I have to walk, but I keep moving. I have taken workshops on Chi running which helps you run without injury and helps keep the running smooth. It saved me.
Have you had surgery?
All of my pain is in the left side of my body, including my left eye. Thigh, foot, head hand and throat are my problem places.
There is a growing group of us on Facebook for people with chiari who run and those who support us. We are the chiarirunners!
I was recently diagnosed with a 5-8 mm and was very active prior to diagnosis. I am going to see dr. Oro the first week of August and this is one of my major questions. Running does not make my symptoms worse, but I don’t want to make the herniation worse. Since my diagnosis I have not been exercising at all. I am curious if anyone else has any feedback as I am ready to start being active again if it is ok to do so. I have so many questions!
I haven’t had surgery, hopefully I won’t. When I first got diagnosed (4 months ago) I was told not to run until the NS saw me. And then he told me I could continue with my life as normal. That I could continue running. I have an 8mm herniation and he told me he doesn’t expect it to get worst.
My headaches are my only symptom and so far and I’ve had them under control since I started taking Neurotin (I may be spelling it wrong)
Thanks for the feedback!
I have had chiari for many years even walking can effect my muscle pain,neck and headaches.I am 7months out since decompression,even though my symptoms have gotten better there are other area’s of pain.I try to walk all I can when the pain is less,hope someday I will run too just staying possitive.
Prior to surgery I had the feeling like my brain was bouncing around in my head when I ran...sometime even when I walked. I also had crippling fatigue that got progressively worse until I wasn't able to work out at all. If I wasn't at work I was lying down! Post-op I have been running several times a week and haven't had any issues as a result.
Provided that your NS is knowledgeable about Chiari and that you don't have any symptoms in relation to your runs I don't see why you couldn't continue!
This is just so random, so I am at work and I have not had much time to even get online to check the status with everyone and the discussion. Well I am getting married with my father of my daughter of 12years this September, he was diagnosed with Epilepsy he has been struggling with seizures and has recently been getting worse he has been having multiple seizures therefore we are finalizing to make us one so we are getting married august 31st. But I started running just this past Monday and I have been in pain now for two days my pain is back I have the sharp heated needle pain from my right side of my head down my neck to my whole right shoulder and now its hard to move my right hand it feels like its going numb and I have a massive headache. I just hate when the pain starts up and I was not sure what I did to make the pain start up but the only different thing was running. I hope no one has to feel this pain. I can't wait to experience the walk this September as well....
If I run, it triggers a pain on one side of my head as well. Exercise alone starts respiratory issues with me too. My symptoms come spiratically and not the same all the time. Sometimes I can work out and sometimes I can only do maybe only weights or just elliptical. I feel like my brain also bounces around in my head. So weird. I went to the NS and he told me if I have no problems then just do what I can and if I didn't then I didn't need to be seeing him. So I just say, do what you can when you feel good.
Maru, you asked about our experiences with exercise:
I'm 6 months post-decompression (17mm herniation) and was wanting to start running. However, I've noticed I have more visual disturbances when I walk briskly, especially if I'm hitting hard on my heels, so this has hindered me from running so far :( I'm extremely disappointed and when I go for my follow-up MRI next week, I'm anxious to ask my NS about it.
It almost feels like my brain is banging around, and once I get heated up and really start hitting harder on my heels, I notice more weird distortion with light (whether sun or artificial), more sensitivity to light, and when I look into the distance, it looks like it's drizzling or raining when it's actually not. This scares me more than the pain and swelling in my neck when I do strenuous exercise.
I'm so glad there are Chiarians out there that can do marathons! I'm hoping my NS will say I just need to heal a little while longer then I can start running.
I too was very active until the chiari started to slow me down. i had surgery 9 weeks ago and tried working out lightly with walks, light weights and wii fitness...big mistake it set me back and right back into bed. i hate being down so now i just listen to my body every day. They say to give it a year after surgery and after 8 weeks i was told to do what i was comfortable with but if i felt tightness in incision area or neck i needed to call them. I was so dead set on no more pain meds and back to my size 3 but thats going to happen as quickly as i would like. so if you opt for surgery which for me it was worth it then be willing to have patience.
PharmChiari said:
I was recently diagnosed with a 5-8 mm and was very active prior to diagnosis. I am going to see dr. Oro the first week of August and this is one of my major questions. Running does not make my symptoms worse, but I don't want to make the herniation worse. Since my diagnosis I have not been exercising at all. I am curious if anyone else has any feedback as I am ready to start being active again if it is ok to do so. I have so many questions!
I am a runner too. I had just registered for my first full marathon when I was diagnosed last September. One of my biggest fears was (and still is) that Chiari would take away my identity as a runner. My NS told me I had no restrictions after surgery and had me believing I’d be able to run a fall race this year. I think he gave me false hope. It has been hard. Recovery is much longer than I anticipated.
Prior to surgery, I had terrible headaches after my long runs. I did run a half marathon a month before my surgery. I could not function afterwards because of the severe headache, but I felt I had something to prove. Since, my surgery in November I have been trying hard to return to running. Other than returning work, it was my main goal of physical therapy after surgery. I have had several setbacks, but I am now up to running 2 1/2 miles. It feels good to be doing something. My NL also did not give me any restrictions and sent me, again, to physical therapy to help with nerve pain. Running is a huge stress reliever for me too!! I stop when I feel bad and go slow with increasing miles. I would listen to your body and your doctors. They have seen your scans and your history.
So happy to see this discussion. My daughter & I argue about this ALL THE TIME!!
I always called her my 6-miler. She had tethered cord surgery in May 2012. Post-op she had been running exactly one week & one day when she was hit by a car while running.
Chiari decompression surgery in January of this year. After begging Dr.Oro for the soonest release to run again, he finally gave her these instructions.
After 5 months post-op, go out & run 1/4 of what you would normally run. The next day, evaluate how you feel. If you are no worse that day, then the next day after, go 1/3 of what you would normally run. The next day, reevaluate. The day after, providing you are again no worse, you can increase a bit more. Continue in that manner until you have reached your goal. Hopefully, that will give someone else some good guidelines to try. I thought it was pretty wise advice.
Unfortunately, she has not been recuperating as well as she should, so she has not been able to get back to running at all. She is incredibly depressed about it. Her spine is giving her a multitude of issues. We don't know what to do next. She tries short distances occasionally, but when walking is difficult, it is hard to justify the impact of running. And so we argue.
Hi Maru! I love running too! It is a huge stress reliever for me, and for some reason, the only thing that I can really push myself through. I was training for a 1/2 marathon when I jacked up my hip, and was benched for a while, then the Chiari diagnosis came. My NS and NL both say that it is up to my body whether or not I run. And I should listen to it. So I do, and I run as much as I can, which is only about once a week, maybe twice. There have been times when I've been having rough times with my symptoms that when I stopped running I would have a dizzy spell and headache for a few minutes, but then I would be fine. My NS is fairly confident that my herniation will not increase, I'm only at 6mm. And that running would not cause it to. So keep running girl! But listen to your body!
Thank you all for your input. It is nice to hear somebody else experience. The running doesn't trigger my headaches, I slowed down a bit since my diagnosis because of my husband and mother. But ultimately I decided to listen to my body just like sunshine99 said, and go from there. My herniation is of 8mm and the NS also told me he doesn't think if will increase from there.
If I have a headache I will postpone my run. And I am running early in the morning to avoid the heat in the afternoon. So I am being a little bit more cautious about my running.
I noticed you wrote about the amount of herniation. The amount of herniation is not necessarily related to the severity or amount of symptoms so it might not be the best measure of whether running is okay. There are doctors who still base surgery on the mm of the herniation, but it sounds like most neurosurgeons are becoming better informed.