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 ❤

Michigan Head & Spine is amazing!!!

Thank you for posting this ❤️

Wow this was fantastic Tina, you did great.

Great video! Thank you for sharing!

Lovely and smart Doctor ❤️

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.

@bleurose4

6 жыл бұрын

**Holly ** I was wondering are you able to work because mine is so bad I cannot work but I'm having trouble getting on disability and was wondering if you have the same problems

@itshollykay1519

6 жыл бұрын

Beth Chance Hi....yes i have been having major trouble also. Alot of places will not aknowledge Chiari as a disability i think....mostly because so many people dont even know what it is & how life changing chiari is. I would day to get a lawyer & just keep trying honey. Good luck to you!!!

@suzzanimalchannel1030

3 жыл бұрын

I had the surgery 2 years ago and my symptoms are still there. It’s so depressing because it’s like no one understands what we are going through, they assume since I had the surgery I’m fine.

@Adam-bq2vw

3 жыл бұрын

I really admire your tenacity. I also feel a great deal of empathy and compassion for you. Best wishes.

@toybaker3947

3 жыл бұрын

I understand All that you have said all too well. Blessing to you healing healing over your body.

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

this is a amazing woman right her

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

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.

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

@hermela4279

3 жыл бұрын

Am so sorry

@Muthonie

3 жыл бұрын

I'm sorry

@michellewalker4785

Жыл бұрын

I’m so sorry

@emmasalek1898

Жыл бұрын

thank you everyone! much love to y’all

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.

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.

@jenniferdontworry1349

Жыл бұрын

You need to say strong I've had the surgery when. I was 12 years old mine is due to a sport injury he should be fine at the end off it ... But he will be in good hands they know what they are doing you need to stay strong for him and you good luck

@hollycurtis6971

Жыл бұрын

As a fellow Chiari warrior, I can tell you this condition can really be devastating because you begin to lose sense of who you are because of the pain and constant battling of the symptoms, it makes you sad and wish you could be "normal" when you know that's probably never going to happen 😥 Take it easy, one day at a time... I try to keep my sense of humor as it's the only thing that prevents me from losing my mind most days. As family and friends, just be there for them, it gets very lonely in Chiari land as I call it.

@hollycurtis6971

Жыл бұрын

Also remember that surgery is not guaranteed to succeed, and there is no cure and it comes with a lot of risks make sure they actually want to go through with it before going through with it

@theresageiger584

Жыл бұрын

What personality changes

I wish I had known

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.

@Hugginsince79

3 жыл бұрын

How are you know? Wha did you find out?

@karenmorgan5517

3 жыл бұрын

Chiari wasn’t found on my MRI. I just had a consultation with Regenexx in Colorado to look at stem cell injections in my C1/C2 ligaments to treat Craniocervical Instability (CCI).

i wasnt diagnosed till i was 20

This was me wish I had known this

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.

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

@gelitrippingkiddo5907

2 жыл бұрын

I have the same symptoms! I’m 26, but I’ve suspected that I have this for a while. Did you ever get any answers?

@theresageiger584

Жыл бұрын

Really

@unme4yeshua

Ай бұрын

How did you find out the menstrual troubles were from chiari? I have chiari and I've been told my menstrual issues are premenstral disphoric disorder by a councelor at my psychiatric clinic. The issues I deal with includes postmenstral issues also and of course during it also. I mostly have trouble processing issues and not being able to control my attitude or mood or deal with relationship issues. I'm also sometimes very suicidal and have attempted suicide at time. Even feeling like I need to force myself to kill myself because I'm irrational at the time and think I have to kill myself to go to heaven. I'm not very easily convinced otherwise when I get l like that. I have also had extreme pain in my hips and back at that time as well....what do you think? Do you mind telling me what you found out about the menstrual issues you've dealt with in your life? I hope i hear from you, thank you..

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

@Adam-bq2vw

3 жыл бұрын

How did it work out for you?

How.do I find help for this please!

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.

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

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.

@annabourassa9223

Жыл бұрын

I just found out on Monday I have this. Please don't give up! I've been on a rough medical road since 2003. Three years I was misdiagnosed and finally was diagnosed with endometriosis. 2013 had hysterectomy. It was the worst day of my life as I always wanted a big family. Now this (after misdiagnosis for 9 years)... I'm going to hang on to Jesus through this. Please be your own advocate and know you are not alone💜

Any psychosis.

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

@itshollykay1519

3 жыл бұрын

Oh thats easy too. I have some bad memory problems. Short term mostly. I get these very weird spells of confusion or "brain fog" is what i call it. Like I can hear what somebody is telling me to do & can understand it but somehow have this confusion of how do it. I have black outs with my vision sometimes usually only last about 3 seconds though. I also have trouble swallowing food & I will sometimes get this jerk in my jaw when im speaking.

@unme4yeshua

Ай бұрын

​@@itshollykay1519the brain fog and confusion and trouble processing are part of my difficulties, I also can't sit or stand long without severe pain creeping up on me with no warning it will be painful and extreme distress at those times, also.

Liver issues