Tina's Story on Chiari Malformation 

Thank you so much for posting this. I am in agony and my life has fallen apparent. It took 7 years of doctors telling me there was nothing wrong to find out i have this too. I see a surgeon next week

I'm a Chiari patient & MS patient. Thank you so much for sharing your story & encouragement ❤

Thank you for posting this ❤️

Wow this was fantastic Tina, you did great.

Michigan Head & Spine is amazing!!!

Great video! Thank you for sharing!

Lovely and smart Doctor ❤️

So glad your doing better.. I am 9 months out and better also. Still have struggles. HUGS!

Very good mem

So happy you found a Dr to help I was recently told I had Chiara 1 but I also have a medium size meningioma in the same area on my cerebellum so lots of different symptoms I do suffer with my vision too it’s scary I don’t think Drs realize how alone you feel when these symptoms kick in so no your not alone so happy you are feeling better

this is a amazing woman right her

My dad had Chiari, he was a fighter to the very end. he was the best dad you could ever ask for. He tried to fight it off so bad but unfortunaly Chiari won that fight... 3/1/72 to 1/11/15

I was dianosed with chiari malformation 3 years ago. I had the surgery for chiari on 12.18.2015 which took care of the dangerous stuff but i still live in grave pain every single day of my life. I was im shock for a long time that i actually had Chiari. I just couldnt believe what was happening to me. The pain & other list of symptoms i deal with on a daily basis is very disheartening & upsetting. I wish it could just go away. I have a scar the entire length of my head & my neck. But the scar is nothing compared to the pain i endure everyday. I also have 3 children ages 7, 6, & 4. And there are lots of things i cant do with them that require alot of physcial activity & as a mother its heartbreaking. So i will push & force myself to do things with my kids that i shouldnt because i dont want my kids to be robbed of a mother because of this condition. So i try to push through the pain as best i can. My prayers go out to any fellow chiari sufferers.

Thanks for sharing your story. Im investigating Chiari as a potential reason for my Neurovestibular symptoms. It’s hard to find solid information about the spectrum of symptoms. I can hardly stand nor walk due to the pressure in my head. Im constantly “repositioning my brain” through postural changes. I finally have a referral to a NS, but the waiting is hard. 4 years now with this.

I was diagnosed several years ago. I went into the hospital and could not remember my own children. They said it was my potassium and gave me fluids for about 3 days. Then said by the way your MRI shows you have Chari Malformation but don’t worry about it and sent me home. I am 59 yrs old and been suffering from migraines since at before I was in 2nd grade. Went in Military and seen Dr after Dr. have been diagnosed with different things even to the point of being told “I can’t find no reason for your ailments “ Feb 2024 I was working at my computer and everything went blurry. The left eye prescription changed some but the right eye is still blurry. The sight is deteriorating and I have been to several Dr that do not want to associate this with Chari. They say there is no association between eyesight lost and Chari. I have an appointment to see a Neuro Ophthalmologist in June. It has been so frustrating with all the misdiagnosis and unknowns. Pray the answer will come soon.

I wish I had known

Were you diagnosed with macular degeneration? I have tonsillar ectopia approaching 5mm and macular degeneration, and I've read that chiari can cause drusen due to increased csf pressure. I have a myriad of other symptoms that could fill a book as well.

My son was just diagnosed today on his 16th birthday and will be getting surgery soon. He’s been having a myriad of symptoms but the most troubling is the personality changes. He is not the same child he was. He’s flat and apathetic and appears completely emotionless. My worst fear is that the damage is permanent.

i wasnt diagnosed till i was 20

This was me wish I had known this

Wow having it that long. I have appointment to see dr because I have had symptoms for 4 years now. Mine get worse around menstral cycle. I have maybe two good days a week. I get light headed, nausea, headache, neck strain, certain movement can set me off too. And sharp pains shoot all over. Ugh it’s miserable

anyone know of a good EDS/Chiari specialist in the mid michigan area? i have brain stem compression

I also have it probably not as bad as others mine is type two I had a sport accident when I was 12 years old.. I was playing football for a club and got spear tackled..... Mine affects my balance and the way I walk

How.do I find help for this please!

I was diagnosed with Chiari when I was 11 months. I had surgery when I was a year and a half

At 35yo I woke up one morning with severe dizziness and almost crawled on all fours to the bathroom. After a few hours it went, but slight dizziness and fog lingered around for few day. Then after 3 months another episode. Then a few more, months apart. Was sent to ENT by my GP in the UK. ENT told me I have a headache but with my objection ENT doctor agreed to head MRI to rule out tumour concerns which were mainly my concerns. When the ENT doctor called with results he said, 'I have some very unusual results, your tonsils are something something, and they are questioning if coughing makes you dizzy.' I was confused and we didn't really discuss anything further. I decided to get a copy of the report, because my conversation with the ENT doctor did not really conclude anything and I never knew tonsils are brain tonsils. The only reason I went to obtain a copy of the report is because I am a researcher and must know the details; if my character was different I would not had bothered. When my GP provided me with a copy of the MRI report, there was one small line at the bottom saying quote, "Neurology review would be further helpful". My GP said there is nothing to be concerned about, and I should not worry. However, pointing to the recommendation on the report that a neurology review would be helpful, I asked to be referred. The consultant neurologist at UCLH knew the condition very very well. I could not believe how well she knew it. It is so difficult as nobody can see what is going on inside my head as there are no external signs. People see me walking looking down at my phone not knowing that the only reason I am doing this is because being hunched forwards with head down under 45 degrees and not looking left or right is the only thing keeping me walking. I am like a glass of water. It is a blessing that this condition is recognised as it's invisible. When your head is put in a water tank you are not able to live.

When security system fails in a phych ward... It's a shame someone has compiled all these for Entertainment. These people may not be talented singers, but they deserve respect.

Any psychosis.

I hear a lot about the physical symptoms, but very little about the cognitive ones.

I was diagnosed with chiari 1 but no doctor cares. Don't do anything. I'm so depressed. I pray every night that I die in my sleep.

Liver issues