Does anyone have these problems? When I first wake up in the morning. I feel perfectly normal. After 27 minutes of being up, getting dressed, etc. I start to lose my balance and walking is a big problem! I have to sit down with my feet up for about 1/2 hour before my balance is a little better. But throughout the day, I do have difficulty walking well. Especially, if I stand up for over 15 minutes! Also, currently, I am riding my three wheel bike alot. After about 1/2 hour of riding, my balance is horrible again. Why?? I have to sit down again to be able to walk slightly. My doctors have NO idea what’s going on with me. Does anyone have any ideas?
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I wish I could help, but my balance issues come on at anytime for any reason. I can just be walking across the floor and get so dizzy that I feel like I am about to faint. Maybe your dizziness from riding comes from the vibration of the pressure on your head. I know it may sound crazy, but maybe.
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Thank you for responding to me. I think it’s so strange that except for my Neurologist, none of my doctors have even heard of Chiari at all. So, I need as many thoughts as possible. Even my neurologist really doesn’t know anything about possible symptoms…
Thanks again!
Mary Jane
Dizziness is a crazy part of Chiari. i have posted quit a bit about it. Chiari tends to affect the brain’s ability to process vestibular information. Unfortunately, treating it does not respond well to medications so neurologists tend to not have anything to offer. Check out some of my posts, including the one under the “Newbies Guide to Chiari”. The Chiari dizziness is quite strange and doctos tend to not understand what could be causing it, dismiss the symptoms as perhaps psychological in nature, and not have anything to offer. Get yourself checked out but understand that you will have to move on to other knowledgeable sources such as vestibular therapists and those who understand neurodevelopmental rehabilitation for the vestibular system. Us Chiari folk are not garden variety clients!
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Thank you for your response…I will check out your posts!
Mary Jane
I feel the same way and the doctors say it’s not the Chiari!!!
Dear Washamary:
My name is Roberta, I’m 58 years old! Had Decompression Surgery in 2014! I still experience some of the same symptoms that lead me to the diagnosis Chiari Malformation! You are not alone and not insane! I experience dizziness is I get up too fast, cannot bend over for fear of landing on my face or turn around too quickly because I will land on my bottom. I went to see my neurologist because I was experiencing numbness in my right leg/foot and my left arm shakes uncontrollably if I hold anything for more than 1 minute. After he ran some tests I was diagnosed with neuralgia in my leg and arm. My doctor said that I needed physical therapy but I declined and told him I get enough PT watching my 4 year old grandson!
2 years ago I was diagnosed with Bilateral Occipital Neuralgia… An explanation for this condition/diagnosis is for another time! All of this information is bewildering. When l wake up every morning all I can do grateful humble and give glory to God for all my blessings! We are fighting a bigger battle right now… COVID19! Be safe be healthy be blessed!
Hi Roberta,
Thank you for responding to my question. I’m going to research some of the things you mentioned like: Bilateral Occipital Neuralgia because I don’t know what that is…Like I said, every doctor I have, doesn’t even know what Chiari is…and when I ask my Neurologist about getting surgery he just says, “you would have a 50% chance of dying…just hang in there I’m sure you’re fine!”
However, like you are experiencing, I have been struggling everyday for 8 years.
Please feel free to email me anytime you are able to work through or experience any more problems.
Thanks again!
Mary Jane
Carolyn,
Thanks for responding! Really, not Chiari ?? That’s what my neurologist says also!! But what could it possibly be then? Have you had any doctors suggest anything else? I’ve been researching vertigo lately. Do you think it could be vertigo??
Mary Jane
Wow! thank you for the info!
Mary Jane
Hello there! I was having horrible balance issues and extreme dizziness throughout my days. I also was having double vision. My eye doctor assumed it was my eyes causing my bad balance and dizziness. So I got new glasses, they added more prism, nothing helped! Finally I went to an eye therapist and he told me to get an MRI because he believed it was in my brain and not my eyes. I got diagnosed with Chiari 11/14/19. I had balance so bad that I had to hang on to walls, even fell twice, couldn’t step off curbs, it was HORRIBLE! I felt like I was stumbling around drunk most of the time. I felt awkward and uncomfortable walking around in public. After my decompression surgery 1/13/20, my balance is almost back to before normal, and my double vision is almost completely gone! I did have headaches and some other issues I didn’t think were too serious (hard time swallowing, lack of gag reflex) that I never really worried about. But the balance was making my life miserable. My neurosurgeon and neurologist, 100% say that it is a cause of Chiari to have bad balance and to feel as if you have vertigo. In my case, my cerebellum was being smushed, which was smushing my brain stem, and putting pressure on my spine. All causing my balance to be affected. They say that your balance is in your cerebellum, most cases, that is where your brain is hemorrhaging. I hope you find some answers! Don’t stop being your own advocate. It took me multiple people in different specialties before I found someone who was experienced in Chiari. Message me if you have any questions! Good luck 
Hi Katie!
OMG…thanks so much for sending me this email! What you’ve described as how you feel is EXACTLY how I feel! My eye doctor gave me prism glasses and they don’t help at all! But my neurologist has told me that if I had surgery I would have a 50% chance of dying!
Who did your surgery? What did this doctor tell you about the surgery? I just printed out your email and I’m going to take it with me on my next doc visit and let him see it! I’ve been struggling with this, at the same level that you were for 8 years!! I am so happy to hear that you are getting a little better! That gives me hope!
I would love to talk to you. I don’t know where you live, I live in Broward County, Florida. Maybe I can find a surgeon who would do surgery for me.
Please message me and I’ll give you my contact information.
Mary Jane
Yes, I do. I actually fractured my hip in October due to a fall. With in the last two months I have fallen 8 times.i do use a cane that helps some. I also have a rare bone disease so I’m sure that helped with fracture.i would recommend gettin a cane. I have a Hurrycane, and it is the best I have used. Just take your time when you get up from sitting, and when you wake up.
Thank you for responding to my question! Good luck with your balance. I hope you don’t fall again!
Sincerely,
Mary Jane
I know this post is from a few months ago but I still wanted to share my thoughts & story with balance issues due to Chiari.
I first went to the doctor because my balance was getting so bad, resulting in multiple falls at work, home or even when I was out & about doing my weekly errands. I started to lose feeling in my legs & I still don’t have that feeling back. I had an EMG test done that showed my nerves weren’t functioning properly & that I couldn’t feel hot/cold or if a needle was being poked into my legs or back, but I could feel surface touch (just not as I should be feeling it, it makes me sound crazy but the best way I can describe it is that I felt like I didn’t have legs but I could see them, I just can’t feel them so). maybe an EMG will show some reasoning behind your loss of balance & prevent you from further nerve damage. Even tho preventing nerve damage was a long gone dream for me I think an EMG could help you & just reassure you that all your nerves are still working properly at the correct time.
These posts so describe the problems I am having. Since being diagnosed, I have had over 30 episodes of vertigo. I had been having problems with sense of depth and also loss of hearing and major tinnitus. I am waiting for an appointment with a neurologist ( referred by my neurosurgeon) and also an ENT referral but our lovely NHS has cancelled a lot of clinics over the COVID crisis. Surgery has been mentioned but for the moment I have chosen to see if I can manage the symptoms at the moment due to not wanting to be in hospital whilst COVID is going on.
I know there are people who are suffering much more than me so am just grateful that I can still work (just!). Take care all!
Thanks for your reply. I’m going to have to research an EMG…I don’t even know what that is!!
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Yes, I’ve been trying to see a recommended neurologist and I can’t because due to Covid…he won’t see any new patients!
I have the balance and walking issues at times too…especially the balance. The Dr said it could be my chiari and also my extremely poor sleep which has gotten better since being treated for sleep apnea. The cerebellum does control our balance and chiari is no friend thats for sure… I wish you the very best Mary and maybe ask your DR. about sleep apnea
Thank you for your response. I’m sure I don’t have sleep apnea. But I DO have muscle issues with my legs. Of course, the cerebellum is responsible for muscle movement. I’ve been working on many different exercise methods. So far, the best thing I have helping is doing 20 deep squats (in a position where I can hold on to the wood at the end of my bed, so I don’t fall) when I get up in the morning. I think this exercise is making my cerebellum have to work with my muscles. After, I get my muscles moving, my balance becomes better.
I do exercise many hours during the day and the more I exercise the better my balance becomes!
I know this life is crazy! Hang in there!
Mary Jane