My Chiari Malformation Story//Living With a Brain Condition 

This was very informative! Thank you for sharing your story. You are so calm and collected

Hi there, I'm not sure if you are still blogging but I wanted to let you know your story has helped me as an inspiration to get through my Chiari situation. Last week on Wednesday I had an MRI done and I was going to call my neurologist the next day but she beat me to it. She woke me up with a phone call the following morning and said we needed to talk which is weird because my neurologist never calls me for anything. She said that the MRI didn't signs of brain damage from my supposed seizures 4 months ago. I was relieved and happy for once, that feeling faded away when she asked a bit hesitantly if I had been having trouble walking or standing. Once I told her I've been using a cane for about 3 months now for balance she literally said ooh then paused. My heart dropped and she proceeded to mention what I have that is most likely causing my inability to walk upright amongst other things. I'm currently looking for a 2nd opinion and from there possibly a neurosurgeon as well. I'm worried because my symptoms have been getting progressively worse and it's hard to do anything physical. I've also had severe memory lapses where I can't remember anything while my body is still doing things and immediately after my memory comes back to me sort of speak, I am overwhelmed with weakness and am immobilized for hours or days. Most of the worse symptoms I've been having this year but some symptoms have started since I was 9yrs old and now I'm 23yrs old. I'm grateful to know what it is and that others know what it's like to go through what I'm going through. Someone finally gets me and their stories are helping me feel stronger and more motivated to decide on doing the surgery. If I do the surgery there's a little chance I could be paralyzed now but if I don't do the surgery then I will be paralyzed in a few years because I'm already losing feeling in my legs and if not numbness then they are in pain. It's picking my poison that will affect me and everyone I know. Courage is what I need and a lot of research of course. Thank you for sharing your journey with others just like, I don't feel alone in this anymore.

I was diagnosed with chiari 1 about a month or so ago. I go in to see a neurologist in February. Theres not a lot of information out here, and what is is mostly medical professionals. Thank you for putting a video out that's someone other than a boring medical video. I hope your surgery went well!

Stay strong, I've discovered I'm there with you. We'll get through it.

I’m 19 and about to get surgery as well!

I’m 57 and just finding out as I was being checked post COVID symptoms so I thought. Mine is a 10 and I am waiting to see surgeon. Your story helped me tremendously. Like you I have had symptoms that now make sense, minus the headaches, thank God. I say to people that God saved me through COVID. I never would have gotten an EEG, then a MRI. I will be praying for you and your upcoming surgery. Thanks again for sharing your story. I am thinking about doing the same.

I'm 63 yrs old I was told I had migraines since 2000 something! I had so many different pills! I had CM since 2009 know one told me anything!!!!!! In 2020 that is when I found out I had IT 😢 I had to do my own research because I knew something was wrong with my head. I went to neurosurgeon who told me nothing was wrong with me go talk to a psychiatrist😢 I took the same MRI and his notes to another Doctor(neurosurgeon )and told him my symptoms and soon as I told him immediately he told me I have CM SMH😮 ! My husband and I was so happy to hear that I wasn't crazy oh someone believed me thank GOD! Do yours own legs work DON'T STOP listen to your body!!!!!! I will be HAVING the surgery as soon as possible! GOD Bless y'all

Did you have your surgery? How is the recovery? I'm praying for you 🙏 you are so strong sharing your story my baby was recently diagnosed with chiari and your story kinda helped me understand better...ty God bless 🙏

My granddaughter is 18 and has the syrinx . Same thing happened with her all her life as well. Shes had the surgery three weeks ago and recovering. I wish you the best

Love this video can you please do more videos I was just diagnosed with Chiari and I will be having surgery in June 2021

I know what your going through i have that too

How are your symptoms now ? My mom just got diagnosed with chiari 😢

Love this video can you please do more videos I will be having decompression surgery in June 2021 I was just diagnosed With Chiari.

Where r you located? Im in philly, and i need to get surgery.. my symptoms are numbness on arms and major fatigue.. im 45m and was diagnosed with sleep apnea two 2years ago and no found that this chari is probably why. How did your surgery go?? Hope your well.

Just got diagnosed .

Hey there beautiful soul and souls. How did your surgery go? Hope you're doing fine

How did the surgery go? . I have Chiari , Stenosis in several parts of my neck and possible cervical instability, just waiting on ct scan to confirm that and see what they can operate on first. Would be nice to know your outcome etc .

My story was a rollercoaster aswell until I got the MRI done and am about to get my surgery

I have syringomyelia….I think next to cancer syringomyelia is one of the most horrifying painful conditions anyone can have

I am kumar my problem Syringomyeli type 1 treatment option...?

Hi Kara - my son was just diagnosed. I just came across your video and wondered how you fared with surgery?

How did the surgery go

How did your surgery go?

I Know its been a while and i understand you don't want to post videos but two years on how has it been? Was the surgery a cervical fusion from Skull to C2/3? have you improved/eliminated your symptoms ? Thanks

Actually I have tears in eyes during this video coz I have the same suffer feeling with Chiari I but no one from family and doctors took me seriously when I was suffering the day then I discovered by my own via MRI just becoz I was thinking that I have cancer I descovered when I told mom she didn’t give fuck just because she is narcissistic and until now I couldn’t forget the words she told me : ppl can died in sleep so all ppl died I have story about that it can be great story in Hollywood but I still smile .. god bless all humanity

Hi,I have 7mm only headache and neck pain do I need surgery, here doctor are not known about chiari 1malformation

Hey Kara, turns out I have chiari as well... How did your decompression go? I found out when I was 40.

Apparently I have this too and I may need surgery or I can die

How did it go I have low lying tonsils and the doctors haven’t diagnosed me but I’m positive this is what I’m going through

get some b12 injections guys, a lot of my symptons cleared up

Hii yu r super cool...I need ur help I was diagnosed with the same from last month ..nd im totally confused what to do

Are you double jointed?????