Chiari Online Support Group

Hoping to change this with diet and exercise


#41

Please let me know how you are. I’m hoping the plant based whole food lifestyle at least slowed the growth. I’m on oil free, sugar free, vegan and would like to help my nephew who has chiari and eats meat. Thank you for writing this and I so hope you are well.


#42

Hello. I hope you are doing well and I hope the vegan diet has helped. Could you let me know how you are doing? I’m a vegan aunt of my nephew who has chiari and would love to support him if you thought it would be good.
Sandy Rubin


#43

Hello!
You know I am still vegan, but it did not change the Chiari over time. Nor did it help the symptoms. Running always helped but you can only do so much of that-
I had my decompression surgery July 26th. I feel so good. Every day I feel good and I’m glad that I finally was okay with the surgery. Your head really has to be in the right place. Your thoughts is what I mean.
I recovered very quickly and it was not at all a hard recovery. You can say this may be due to a vegan diet in part that I was able to heal so quickly. But also staying positive was a big part.


#44

Jenna, it’s wonderful to hear you’re feeling good. That makes me so happy. And re the vegan diet, that made me feel better too…then I gave up oil…due to a natural high cholesterol level. Not only did my cholesterol drop, the pain in my joints (I’m 75, have osteoarthritis, bone on bone) went away and I’m no longer sore the next day after working out. So weird…never expected that. Just telling you in case you ever get arthritis or or sore after workouts. Go low low oil. I’m glad your operation went well too. Consider this a hug and kiss…you warmed my day and I’m smiling.


#45

Jenna, I am so glad you are feeling good and that surgery and recovery went well. I have been wondering about you. I just registered for a slew of spring and summer half marathons and events! Are you back to running?


#46

Dear Sankirk,

I also was diagnosed with osteoarthirits - and degenerative disc disease - which I often wonder if those conditions made me more prone to the “Chiari brain-squish.?” I don’t know. I find that what ‘fires up’ my osteoarthritis is sugar. I don’t do much of it. I don’t eat pastries, breads, cookies, candies, etc… But, I do have a weakness for Pepsi. The caffeine/sugar combo seems to rev up my Chiari-feebled brain on droopy days. That’s to say - my Central Nervous System (CNS) loves Pepsi - but the rest of my body suffers from it. Sigh. Certain days, I have to decide… do I want a brain? Or, do I want no pain?

Have you ever seen a movie called “Lorenzo’s Oil? It’s a true story. It’s not about Chiaris, but it taught me a lot about the CNS. The main character is a child who is losing the sheath around the nerves (can’t remember what that sheath is called - something like mellanin…) And, it sounds like the brain, CNS, our entire ‘electrical system’ of nerves rebuilds itself with fats. However - not just any fat, but “medium-chain” to “high-chain” fatty acids. The 'low-chain” fatty acids are the awful stuff - and what you find most easily available in the stores - with chips, cookies, pastries, corn oil, etc… I wouldn’t be surprised if the low-chain oils are combined with sugar - and thus providing the arthiritis inflamation. It’s kinda hard to find medium-chain fatty acids - like coconut oil, flaxseed oil., avacado oil… what they call “tropical oils.” Only until recently could you even find coconut oil. Weekly, I make it a point to pop some purple and blue popcorn in UNREFINED virgin coconut oil. I call it my 'brain medicine snack" ‘cuz all blue foods (vaggie-based, that is) are supposed to help restore the brain - and medium chain fatty acids help restore the CNS. High chain fatty acids are nearly impossible to get - oleic acid, and such. In “Lorenzo’s Oil,” the high-chain stuff had to be extracted in laboratories. And cost $$$. I don’t try to search for that stuff - although I thought I saw "oleic acid’ as an ingredient in a coffee creamer once. :face_with_raised_eyebrow:


#47

Hi, Who was your surgeon ? and did your syrinx get better?my son has a syrinx but no regular symptoms or pain diagnosed 2 years ago.


#48

I am running the Boulder Boulder on Monday! I have not been running much this past year, BUT I am happy that I can run, however slow I may be. Running still comes easy. I am thankful for this.
I still get those Chiari headaches. Anyone else? I am seeing an occupational therapist that seems to know a lot about Chiari. We’ll see. Still not even a year out now.
Runnergirl, hope you are well. Healing and Happy.


#49

Yes. But barely present anymore. I am doing graded motor imagery exercises from the physical therapy research group, Neuro-orthopedic Institute based in Australia and also motor control exercises for my neck and shoulder. Works spiffy.