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I have a 13yr old who was diagnosed with this 3 years ago. Do you think you can help to remove the tumour. Our doctors here in the UK don't seem to know what to do, they say they are not familiar with the prognosis or treatment

WHA IS WITH THIS AGGRAVATING BACKGROUND MUSIC = IT MAKES ME WANT TO BARF.

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.

Thank you for posting this ❤️

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.

was the mri machine faulty the first time?

Glad you ok, now! :) I just got diagnosed with it last week. 😔

I have severe neck pain as well and my cat scan came back normal? This might be what i have

She is excellent!

I go to her too! She is great 😃

Unbelievable. I can't believe doctors couldn't figure this out for so long. When did he have his surgery after diagnosis like how long did it take?

I didn't get diagnosed till I was 41 but once I knew & learned about it realized I was sympathetic since childhood.... Too scared to get decompressed though

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

How.do I find help for this please!

I’m a flutist and I finally have an initial appointment next week. The flute is sounding ever more strange.

Any psychosis.

How are you doing now? Did the surgery continue to work for you?

I'm 35. Long story short, I have Lipomyelomengingocele....have had 3 surgeries. Last one @ 27yrs old. That was botched...can't feel my feet, backs of legs, "pelvic area"... incontinence worsened. Have to Self Cath for rest of my life now. Cannot void by myself anymore. Walking-wise, I'll be fine for a while (months at a time), then all the sudden I'm walking like I'm 90yrs old. Does anybody know if they can cut this Tissue mass out??? I feel like it'd be extremely high risk, high reward. I'm just tired of being "in limbo". Can anybody help me?

My story of a teathered spine is almost exactly the same as tylers

A lot of spine surgeons really suck out there dam

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

Hi, I live in Australia about in 2017 I had an operation for an accoustic neuroma, I had never heard of one, my doctor sent me for a scan and one of the doctors picked the neuroma, I was sent to a surgeon at the John Hunter Hospital in Newcastle, the first surgeon said he wouldn't touch it but the second one I saw who is a professor booked me in for the operation, I was on a waiting list for a few months and during that time I was getting worse, my balance became worse and I started having sick turns, the surgeon told me after the operation that he couldn't save my hearing but he removed the tumour which was touching the brain, I felt pain but I was glad to be alive anyway, I was an amateur musician in a pipe band and I found that playing the pipes made me dizzy and I couldn't march in a straight line or stand for long periods, this was proved when I collapsed at a memorial parade so I've given up piping well of course I didn't like pipes anyway, I still play the piano accordion but I don't play at functions now, I used to play a lot of Scottish and Irish stuff, I'm 72 years of age, I went to special therapy to try and improve my balance but I don't think it made much difference I just have to be careful and of course I'm banned from using chain saws, getting on ladders or any high wire acts, but it's good to be alive and I can relate to the situation you were in, cheers from the sunburnt country.

Ofc the mother punished the kid and says "when I may have punished you". there is NO MAY, you did, you are the adult its your fault you took Tyler to a moron doctor.

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.

I started to have vision changes went to my eye doctor who I had been going to for years. They told me I needed to change my contacts out from single vision contacts to mono vision contacts. So I let them. 1 week later I called them told them I needed to just go back to my old contacts that these were not working. I again tried to explain to them I was just not seeing correctly could not explain. I was a Nuclear Medicine Technologist and could not see the thyroid uptake dial good or see in mass properly. They said I was not motivated enough to use the mono vision contacts gave me my old contacts and walked me out to set my up with reading glasses. I left. Then one day I got in my car pulled out of my driveway and was driving up all over the edge of lawn. Never drove again. I was working at a very good hospital and felt I would get good treatment but my gut told me to go to the Mayo Clinic that was here in town. I did and they ran a complete battery of tests including testing for MS. I saw neurologist and Found I had Arnold Chiari I Malformation with a syrinx ( cyst) all the way down to T-1. The cerebella’s tonsils were past c- & C-2 ( neck vertebrae). They did a sub-occipital craniotomy with a laminectomy of C-1/C-2. Basically opened up my spinal canal to enlarge and shaved of the back of my first 2 vertebrae in the neck. Also shaved off part of back of skull. I am very fortunate. Some of my eye issues reversed themselves and some did not. I am very grateful because if could of been a lot worse. Also when it manifested itself I could of gone from doctor to doctor looking for the correct diagnosis.

Holly Gilmer doesn't care about symptoms unless it's worthy of surgery. She told me because of the size I'm not having symptoms/ complications from the chiari. It has to be from something else. Size dies not matter when it comes to rather on not someone has symptoms! I just wasn't a candidate for surgery and was dismissed. No checking for anything going on with my spine or CI issues.

Liver issues

A wonderful doctor.

I wish I had known

I wish I had known

I wish I had known

I have a channel too but I'm learning was diagnosed since 2004 I opted outta surgery but my daily life just get worse

Glad to hear he's doing okay, I have a tethered cord myself but I've already had three surgeries to deal with tethering. Doctors can't operate anymore, they say it would do more harm than good. One question, in a person with a tethered cord, is it okay for them to move their neck, either Bend or turn left or right? I've had some doctors say it causes some harm to the cord because the cord isn't moving freely due to the tethering and others say it does no damage to the cord. Do you have any info regarding this? Thanks.

Is he ok right now , coz I had the same surgery when I was 18 years old and now I’m 23 years old and my bladder control and motion are worse then before

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

I need help asap

I wish I had known

This was me wish I had known this

NO CHIROPRACTORS EVER

I wish I had known

I wish I had known

I wish I had known

I wish I had known

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 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.

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

Oh, he’s Canadian… that explains everything. No, I’m just kidding.

Great video! Thank you for sharing!

Hello! A year after surgery I decided to make a dream a reality and become a firefighter (first female on the department). And I have also completed 2 more college degrees and will finish another this December. There are days that the weather bothers me, but NOTHING like it did before surgery.

i wasnt diagnosed till i was 20