Chiari Online Support Group

Hoping to change this with diet and exercise


#1

I am 32 years old. At 30 I started having dizzy spells, mostly while driving, and lightheadedness. I was tested for low thyroid 3 times, it was always normal and I was sent home. Then pressure in my right ear showed up like it was full of water and I felt a lump in my throat when I swallowed. I didn’t see my Dr about that. As the dizziness got much worse and I felt this pressure between the base of my skull and the top of my spine I decided to try chiropractic care. I had my neck adjusted several times until one time it made everything worse. I was spending several days laying on the sofa with an ice pack rolled up and shoved between a hard pillow and the base of my head. Seemed to help a little. After a year I truly felt that there was something in my brain causing this pressure and all of my symptoms. I was sure it was a brain tumor and with two young kids I was so scared. I returned to my Dr and with a different kind of examination he had me lay flat on my back and turn my head to the right. The room was spinning. He then, finally, ordered an MRI of my head and inner ear. We thought it was an inner ear infection.
The results later that day confirmed Chiari Malformation of 1cm. I was rushed into every neurosurgeon’s office in CO. Three more MRI’s and lots of talk of a surgery date. I have kids. I can’t have brain surgery! I bought books and watched on-line videos on Chiari. One of the videos had a poster board in the background that had “plant based diet” written on it. I liked the sound of that as I had become somewhat of foodie since being diagnosed with this. If I did need surgery I wanted my immune system to up to par. I worked in hospitals and know of all the things that can go wrong after a surgery in regards to a hospital born illness.
So, I set aside my Chiari books and bought plant based diet books. Science based diet books. I remember a body exhibit at the museum when I was a child and there was something about human bones will grow to adapt to the humans life style… like a runner has exceptionally larger bones in their legs to support that life style. Couldn’t my skull grow overtime to support the size of my brain? I asked this question to two of these neurosurgeons and got a “Well, there’s no study being done on that so we can’t say.” answer.
I am doing the study on myself. I graduated high school and took some college classes. I am a stay at home mom who reads as much as I have time for. I have been on a vegan diet since May of 2016. I feel better. I have a day about every other week where I have to lay on the sofa with an ice pack. I took the headrest off of my seat in the car so I can lean my head back while driving. I take Tai Chi once a week. I am slow when getting up so my head doesn’t pound. It’s still hard to turn and look to my right, as I almost pass out from this. But I am improving. I was also told not to run, so me being me, I run 15 miles a week and have plans on running a marathon with a shirt that says ‘Chiari Fighter’ on the back. I will not have the back of my skull removed unless this doesn’t work. I am giving my body a chance to fix itself. Our bodies want to be healthy. I believe this. If I give myself the very best tools, the food it needs, my body will take care of itself. Right?


#2

Our daughter was diagnosed with Chiari malformation when she was in eighth grade, its been 2 years. She was having bad headaches every day, we took her tour doctor and they did blood work and ordered a MRI. The MRI showed that she has 6ml slippage of the cerebellum. She seen a nuerogeon in late Sept of 2014. He put her on Melatonin. She has trouble sleeping so our family doctor prescribed 1 tablet (25mg) of Benadryl to help her sleep. Her neurosurgeon said that she doesn’t need surgery at this time. When there is a change on the weather and the barometric pressure is up this seems to cause her to have very bad headaches with some nausea. She also fights with dizziness and takes motion sickness pills to keep it low. The only sports that she can participate in at high school is swimming, but no diving. Her neurosurgeon told her to try different things to see what she can do. She used to be on a dance competition team, but had to give that up because of the spins and turns that is required, this caused very bad dizziness for her. Every day is a little different for her, but she fights to maintain somewhat of a normal life. Loud sounds like crowds of people talking or loud music cause her to have headaches. The way Chiari was explained to us is when the tonsil of the brain, not the tonsil in the throat slips down into the spinal column. That makes sense to us, we have more found more people that have Chiari or know someone that has it since our daughter was diagnosed. We wish you good luck with your battle against Chiari


#3

Based on what I experienced, you will gradually get worse.


#4

You know, when I run its the only time my head isn’t pounding. Maybe your daughter can try that? It makes me feelore normal when I can partake in some sort of physical activity. Thank you for sharing this with me!


#5

How/why do you get worse?


#6

The way I understand Chiari is your cerebellum tonsils of your brain slip down into your spinal canal. The tonsils cause a blockage of your spinal fluid into your spine. Some people never experience symptoms. Unfortunately, when the problem is not treated over a period of time you can get nerve damage. My blockage was 13mm when I had surgery. Some people have the surgery and their symptoms go away for awhile. Chiari is progressive. I started having weird symptoms in 2008. I had surgery in 2014. Presently, I suffer constant head, neck and eye pain. My balance is off and I have constant pain all over my body because of nerve damage. I’m just telling u what happened to me. Everyone is different. May you find the correct answer for your specific condition.


#7

I am 31 years old and was diagnosed March of 2016 and my pain got worse as time went by and pain started October of 2015. Could barley go to work full-time but I did anyways because I had to pay the bills. I also was hoping diet and exercise would do the trick. I’ve been healthy and athletic my whole life until Chiari Malformation I with 12mm long occurred. Changed to a AIP (Autoimmune Protocol) Paleo Diet for results but I really changed because of my Scalp Psoriasis. The psoriasis was right where they did surgery (11/28/16) and I cleared it up from the diet. On a plus side it kind of reduced my symptoms and made me feel better with seeing the positives! My dizziness, lightheadedness, pressure in my head, blurry vision/double couple times, fatigue, nerve pain, joint pain, limp on left leg, numbness on left side of my face/eye, breathing difficulties, hearing problems, and lots more came back. Ended up doing surgery because I was altering my life and symptoms never really got better. Also I was afraid of getting permanent nerve damage in my legs. When they went in my blockage was more like 14 mm long. They said it was worse then the actual MRI showed!
For exercise I completely stopped all exercise even though it was really hard too. But I did do meditation and it helped a little. Exercise made it worse and I use to workout every day! Been 2 months and 2 weeks post-op and I was going to start with yoga and build up my strength again.
Everyone is different with Chiari and I wish you the best of luck on finding your healing strategies!


#8

@AW31 It’s been a year since I was diagnosed. I did my best for a long time and now I am ready to throw in the towel. My head is pounding all the time. I’m not much of a mother to my children because I just can’t move. I am scared, so scared of this surgery. What if I come back from it worse off then before? I have 2 kids to raise!
I’d like to feel good again. Maybe at least this diet has helped my body to be at it’s healthiest to be able to recover quickly. You really saw a lot of improvement?


#9

@Apple62 Have you ever tried Reiki or Acupuncture? For the pain?


#10

I tried acupuncture several times and it had no affect on me. I have tried needeling in my lower neck. The pain Dr tried trigger point injections. Orthopedic dr did shots in my back. I haven’t tried reiki. How are you feeling?


#11

Chiari by itself is NOT PROGRESSIVE. (not type 1 anyway) Fewer than 10% of patients ever require surgery. Not many of them have long term success. In fact as data is being better consolidated it appears less than 40% are helped unless they also have syringomyelia or some other coconditions which do need treated Its isnn’t clear whether they are caused by the chiari or are sperate. The number of “excuses” for the failure of the surgery is overwhelming to me anyway. All are conditions which should be caught before decompression.


#12

I had Reiki done by a friend and actually had a good few months that after. It was totally worth trying something new. May not work for all but I certainly can attest to something real there.


#13

Fellow mom here. I am a mom to a child with a genetic disorder - Angelman Syndrome and I did everything I could to avoid surgery. I am a marathon runner and running made me feel so much better when I was in the thick of it all. It was the only time I didn’t have a head that felt like a champagne cork about to blow. I had surgery this past October and it was the best decision for me to make. It might not be the best for you. However, I am a much more present mom now and am completely symptom free. There is no cure for Chiari and surgery is just one method to ease symptoms. I did an AIP diet for 18 months, kept up my running and also did acupuncture and sacro-cranial massage therapy. I ended up with 2 syrinx and so surgery was not longer optional due to the blockage of my CSF. I am running again and just started Barre3. My syrinx were a result of the inflammation due to my Chiari and the block of CSF. My Dr is Michele Chowdhary at UW Neurology and she is pretty incredible. I spoke with several of her patients. I also know a woman that had decompression 15 years ago and is still symptom free. I think it really depends on the Chiari itself. Mine was very textbook and there were no issues with cysts in my arachnoid membrane, etc. My last dye MRI shows the syrinx are resolved and normal CSF flow. I know my brain could “sluff” and it may start all over, but my quality of life is 1000 percent better than it was just 12 months ago. Hang in there and I hope you find a solution that works for you.


#14

Thank you! I really appreciate this. So happy you are doing well and back to running-
Can I ask, since you were in such good health before what was your​ surgery and recovery time like?


#15

I think my recovery would have been great if I had not contracted both asceptic and bacterial meningitis. As it was, my Surgeon and other Dr’s have told me that because I was very healthy going into surgery it made things better for me. I also had a nutritionist as part of the team provided to me from UW that gave me a pre-op eating guide and post op eating guide that was super helpful that I followed. I have my first race since surgery coming up next weekend. It is a 5K. It is a start. In July I will run Ragnar Relay and then with any luck go back to at least one half a month like I was pre-surgery and at least 3 full marathons a year. I am registered and will train for The Goofy Challenge 2018 starting this June. I do think being healthy and in shape makes a huge difference.


#16

Hello, I too am a Mom with two boys, my symptoms started in 2000, pain vertigo, nausea, falling. I was diagnosed with Meneires in my left ear at the same time, had the ear surgery first, not as evasive. I did not have my decompression surgery until 2012, I had continued to work throughout all of this, or at least tried to. I felt better after my first decompression, had to have a corpectomy c5 to c7 with fusion, due to previous auto accident. I made the mistake of helping my Mom, had to lift her and take care of her for about two weeks straight. My husband was not aware of me doing this but noticed I was getting worse, put a stop to my caregiving. I caused by brain to slump over 8mm, finally broke down and had the 2nd decompression with mesh. I was doing good, I am 18 months out, have fallen over 6 times, I too am stubborn, had a infection in my surgical site, and just had an mri, waiting on results. This is not to scare you, but for you to realize we are all different. I have always been active, maintained a good diet and healthy weight, I heal quickly, and have a good tolerance for all this pain that we get, I too use ice packs, and remember worrying over taking care of my sons and husband, my sons were 5 and 10 at the time, during all of this they have been my strength and support. They call my episodes “Weird”, so now they say your weird Mom aren’t you. They are grown men now, but still worry and care for their Mom. One in another state, and the other in college, an hour away. You too will get through this, listen to your body, do research, but remember we are all different, and you are not alone in this. I have done yoga through all of this, for me it helps with the pain and clears my mind. I also use essential peppermint oil and peppermint candy for my nausea. I hope this finds you having a good day, I am sending positive thoughts your way. K


#17

Jenna you are Someone I would Really like to get to know…I Do Not want to have surgery. I have not worked out in a long time. And now am over weight by 30 lbs ! I see your determination and your vigor ! And am wondering how you are doing ? I am Currently set up to have Surgery The end Of MAY…but am Having SERIOUS doubts…I am really wanting to know more of your story. I’ve wanted to Try the things you have tried…even as we are all different…Chiari…is a nasty thing… and I figure We can learn from one another…you sound like a True Fighter ! Surgery Or Not…You are a Chiari Fighter Lady ! You Go ! …and FYI I’m on the Western Slope ! …NormaJean


#18

Good for you!! Kick butt in those runs and remember how lucky you are to be where you’re at now. Truly inspiring runnergerl-


#19

Thanks NormaJean!
I am having a good week. I scheduled an appointment with my neurosurgeon a month ago, when my head was really bad. Weak moment. I cancelled it this morning and am back to being a fighter. As for now.
On another note I found a Dr who promotes the whole foods plant based diet. He’s in Ft Collins. Very smart and encouraging man. He basically explained that this Chiari Malformation is a mechanical issue. I am probably not going to solve it through diet and exercise. He is going to do more research for me and we’ll have another meeting in the next month. He did say that you have to look at the pros and cons. You have the surgery? The neurosurgeons that preform this surgery have done many before yours and they are very good at it. But there is that very small chance that something goes wrong. That sucks. Or, you don’t have the surgery? You live with the pain and headaches and pressure for as long as you can. What’s your quality of life in the meantime? It’s all very personal when it comes down to it. What are you willing to live with?
This is all weighing very heavily on me now with two kids to raise. I don’t think anything would go wrong in the surgery honestly. My head pounding makes me a pretty grumpy person. Some days I stumble around holding onto furniture because I’m so off balance. People around me are nice about it and support me in whatever choice I make. I’m just scared. For good reason. I am still running. It really is still the only time head feels good so I run for an hour or two at a time when I’m having a rough day. I can’t figure out why running makes it better.
What makes you feel better? What have you tried? I don’t know if I should post my phone number on here but if you think you’d like to chat sometime I’d love to talk. I haven’t met another person with this. And I’m also very sorry we have to have this in common. Everything happens for a reason. We needed to slow down in our lives maybe and this was how our bodies chose to tell us that??
I’ll do anything to help someone in my position. You let me know anything I can do-


#20

Thank you Jenna! I hope you find the solutions you need. I have been very careful about my recovery and taking it nice, slow and steady. I am careful to not lift too much or strain yet. My Surgeon was very clear on this and told me it takes at least a year to recover. My 5K was so fun and I signed up for 2 more and signed up for my first Half - it will be in September. We all have our journey to take and each one is different. Listen to your body.