Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

The Just Do It Collecion celebrates 30 years of the iconic slogan—now at NORDSTROM x Nike.

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41 thoughts on “Exercising With Chiari 1 Malformation

  1. I very much enjoyed your post. I completely understand everything you’re are going thru. The regular doctor appointments, the try this medicine, the limitations on everything you do. It’s hard. I did find that I could still do yoga and I have a stationary bike that I can sit on and do some exercising.
    Is your back pain directly related to the chiari or do you have an injury?

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    1. Hi! Thank you so much for your comment! There are very few people living with Chiari. I’ve personally never tried yoga, the surgeon did recommended to try out Pilates. I haven’t as I get dizzy very easily and experience vertigo daily.
      Yes! I’ve thought about a bike, they have bikes now, that only have the pedals, you sit say on your couch and just pedal. Have you seen those?
      My back issues are mainly due to Syringomyelia. Syringomyelia will appear only through Chiari, however some Chiari patients will have it, while others won’t. I do. I had Laminectomy surgery for the Syringomyelia back in November 2017 and the surgeon placed a shunt. Since surgery, the back pain is not as bad as it was but I still experience some pain.

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      1. Wow, I have never heard of the Syringomyelia, so l looked it up. I see that I suffer from quite a few of these symptoms. Honestly I have always thought it was due to the back injury. Personally I do not have a good Neurologist. My first one was a poor excuse, he told me to go home and get as much info as I could because he had never treated anyone with it. My second Neurologist is a very good one she is the best in the city that I live. She is actually a surgeon. She said at the time that I saw her that it was not bad enough to do the surgery. I basically wasn’t walking into walls yet. The headaches are being treated but with the rest of the symptoms I guess we are just letting nature take its course. Because the doctor I see really doesn’t understand the chiari either. It is very depressing at times to deal with all of the limitations that I have. That is why I started the blog and reaching out to others. I know that I need to find a good Neurologist but I am just at the point of exhaustion with the whole thing, of trying things that “might” make your life better. Or as the surgeon put it ” until the quality of your life is low”
        Thank you for sharing your struggles. If you are having balance issues yoga might not be the route to go but it is very similar to pilates.

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    1. I don’t even know where to start with the exercising. I’m afraid of my legs giving out on me and can only picture myself dropping like a log in the middle of somewhere. Still trying to think what would be best to do with how I’m feeling at the moment. Maybe Pilates?

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  2. Oh I SOOO miss being able to run. I used to put my daughter in the jogging stroller and run away all of my thoughts and come home with a clear mind.man I loved those days.
    Now I have to adapt to limitations. Daily limitations pop up and every day is different. Some days I can walk around my own yard. Some days I can’t walk to my own bathroom.
    I think that’s why I took up photography as a way to be able to get out in my scooter and find something beautiful.
    I recently got a cooling vest so I didn’t get overheated. Last night my husband asked if I realized how hot it was as we were out and I was taking photos. Ofcourse he was walking and I was riding in my scooter and I said ” Um no, i’m covered in icepacks” oops. Poor guy. I forgot he was NOT covered in icepacks.

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    1. Yes, I can relate to that so much! Yes, it’s all true. It’s a daily thing, you have to go as it comes, as things come up, as different pains arise. Yes, I have my medication, but that’s not to say it’s a miracle worker. Haha, poor guy indeed! It’s scorching hot outside! Too hot to be outside some days.

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      1. Yes. Now they you can find out a lot sooner if you have symptoms and get the doctor sooner. I had 3 pregnancies after my diagnosis and while pregnant, they did ultra sounds they continuously checked for Chiari in the babies as it can sometimes be hereditary. And after they were born, at the hospital they tested for Chiari. Thankfully all do not have Chiari.

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      2. Yes, if you know you have it, the OB can test through ultrasound to know if the child has Chiari. My doctor did it with my last three pregnancies. Also, tested at the hospital after they were born to confirm. It’s fascinating to know how far we’ve come – and still have ways to go in other areas, but I was born in a third world country where there is no way doctors would have known I had developed Chiari prior to my birth.

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      1. That’s wonderful! How long for? I want to start walking. But even wanting to do already has me a little nervous and defeated. I can’t go up or down stairs also. I feel like the entire place is spinning and then feel so nauseas.

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      2. It’s taken me quite awhile to walk around my property with more ease. l can now handle about 15 minutes outside before my head starts feeling poorly. Yes! I get very nervous too before walking or stairs. My equilibrium is off, so I’m a bit unsteady and very nauseated upon exertion but my Dr. says I’m getting stronger, even if I don’t feel like it. But, l am really bad at pacing myself, I just want to be like I was before TBI, like you wrote, but my body says no.

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      3. Good for you, 15 min is good! Yes, I’m the same way, my balance and left side of my body – especially my left leg and foot, are still numb. When we go on vacation which has been Disney, we have to cater to my bodies needs. And often times I do need to rent a ECV – electrical scooter.

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  3. Thanks for sharing…. you are a very courageous and determined young lady!… perhaps some of the things you feel you cannot do, you can still do though perhaps in moderation and in a different manner… 🙂

    “If you think you can, you can. And if you think you can’t, you’re right”. Mary Kay Ash

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    1. Thank you so much! Yes, everything in moderation, everything light. Love the quote, so true, it reminds me of the importance of listening to your body. If it’s beginning to weak it’s probably right and it’s time to stop. Thank you so much for the comment, I appreciate it 😊🙏🏽

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