"Chiari I Malformation: The 'Cover Up'" - Judy Huang, MD

[@FocusonHim2023]

I remember telling a doctor that laughing gave me “brain freeze” type pain…he told me not to laugh so hard…After years of of misdiagnosis for Migraines and Vertigo, I switched docs…A female physician was the only one to suggest a CT after a double ear infection and then an MRI…And there it was, Chiarri 1 …This was very informative

[@pattyogletree9940]

So true my granddaughter has had headaches for many years and other issues. It was brushed off as growing pains. She’s having surgery in two weeks

[@heatherdiaz4380]

My daughter was just diagnosed with Chiari. She is 7 years old. Her pediatrician said oh its normal for kids to get headaches. She gets them almost everyday. They finally ordered and MRI and found it over a year later. She is now going to see a pediatric neurosurgeon.

[@pattyogletree9940]

Like I said that my granddaughter had the surgery back November 2023. The surgery went as expected in Birmingham Alabama. Later she had some leakage. She was given antibiotics and later steroids. Now it’s April and she’s doing great. It was a relief to no longer have headaches, and her taste and smell returned. A happy 18 year old senior now to go on with her life. Doctors should listen to parents when they go to them with their children having headaches and other symptoms. MRI with contrast was used to diagnose her.

[@jessicaphillips1950]

More doctors need to be like her. She talks about how patients are still hurting and frustrated when doctors don't believe them, and that just because pictures say it's fine doesn't mean it is. I can't explain how important it is for the medical professionals to learn and remember this above all. People generally don't want to be in and out of the doctor, I don't want to feel like crap, I don't want to waste my time with doctors telling me it's anxiety. If they come to you they probably are in pain

[@rut8851]

I was just doagnosed with this at 57 years of age! Lord, God was definitely with me throughout my life. I never knew all of the symptoms I was having was related to this. As I'm waiting to see a Surgeon, I am educating myself and this, by far was the best explanation and presentation I have seen. Thank you so much!

[@tailzzzzz]

I'm almost 57 and have tonsillar ectopia approaching 5mm. My symptoms are severe. How did the surgery go?

[@rut8851]

@@tailzzzzz I have seen the surgeon and surgery has been recommended. Even though the symptoms are getting worse, I'm holding off on surgery for now as I'm not working and home so I am not putting myself physically which seemed to exacerbate the symptoms and I'm waiting to be able to afford my part of what I have to pay(10%) which is too much for me to handle right now. The surgery is quite expensive. Also not only that, also diagnosed with seizures that I was born with unknowingly. I'm trying to get the meds to a comfortable level as well before I proceed. It creates quite a lot of anxiety. I hope and pray you get relief soon. The doctor was truly amazed with my having a 10m that I've gone this long. It has truly been through the grace of God.

[@Ear4truth]

What were you symptoms

[@anndean965]

How are you now post-surgery

[@TraceCurtis]

Dr Luciano was my surgeon at The Cleveland Clinic back in the early 2000s. I had a huge amount of complications and he did everything in the world to take care of me over a year and half period. Great to see him!

[@denisehaley9271]

I went to Cleveland Clinic AFTER my 1st decompression surgery and they said I was "cured" because I already had decompression surgery. Less than w yrs later, I had ANOTHER surgery. These Dr's don't know crap.

[@eurecaification]

We need doctors like her, here, in Ecuador. I was diagnosed with Chiari I malformation and syringomielia, almost ten years ago, nine years after the surgery I got chronic headaches again and I do not understand these, meds don`t work, and I feel sad and fatigued all the time, doctors say that could be only stress, but what kind of pain persists for weeks and interrupts sleep?..that`s really frustrating

[@onefabknitternz]

Do you have Hypermobility ? I hear a lot that this can be the main reason symptoms come back

[@eurecaification]

@@onefabknitternz, I didn't know what it was, but now I guess I've had hipermobility all my life, this is maybe the reason why the scoliosis looks worst each time, and the reason for practicing yoga, it maks me feel better and gives me stability

[@lucyannmcwilliams3889]

In my research You may have a SPINAL fluid leak. Angie. . I hope You can get it treated.

[@1shaymocha]

This is what I'm afraid of. Having surgery and still having symptoms 😢

[@jamiejohnson7672]

this is right on point! it took me just over 3 years to get my diagnosis! It was my onset of headaches with small physical exertion that finally led to my diagnosis. . I felt like I was having a stroke, my brain felt like it was squeezing itself. I noticed my eyes were twitching from side to side on their own. I was so scared. My Dr sent me for MRI and the next day I had my diagnosis. 3 months later I had my Suboccipital Craniectomy with C1 Laminectomy and Duraplasty. I have never felt better in my life thanks to my amazing neurosurgeon! 10 years Chiari Free!

[@ameegrant6055]

What kind of surgery did you have? Who was your doctor, Name & state? What kind of symptoms did you have? Any muscle weakness in legs, facial numbness, speaking and swallowing problems? What

[@denisehaley9271]

You're very lucky to be better.

[@nadiasaffodien7486]

My pains started in 2019....I was told it's carpal tunnel....but as of last year I've had muscle atrophy and weakness of the left arm/hand/fingers (ape hand) with 7mm tonsillar herniation and syrinx from c1 to th9 ...syringomyelia was diagnosed April 2024.

[@HelenR_38]

Hi , my case is very similar to yours . Did went through surgery or have been on any treatment ?

[@dagib1006]

Thank you for this video. I am from Austria... have heard and been explained many wrong “facts“ about this condition.Why are so many doctors not watching these kind of videos, why are so many not interested in doing research on this topic. Austria seems hanging ages behind concerning Chiari malformation and the symptoms....or Chiari-like symptoms....and as a patient you are looked at in a strange and annoyed way if you know a little more about your own health condition and dare to speak up....suddenly it might happen then that you get diagnosed with panic attacks...🤔

[@MandysReptiles]

wish i could find a doctor like her.

[@TheEDNC]

Opening the dura can cause Intracranial Adhesive Arachnoiditis (IAA) from aseptic chemical meningitis. This slow progressive iatrogenic disease is very severe and is rarely discussed because it is incurable. The symptoms of IAA are often much worse than Chiari itself. The doctor here obviously refused to discuss it.

[@trolloftheyear7963]

Thank you for bringing this up. There are always big risks whenever the dura is opened.

[@1shaymocha]

So is it a great risk 🤔 to have the surgery verses just managing your symptoms?

[@TheEDNC]

@@1shaymocha It all depends on your surgeon's skill level … select carefully.. good luck to you!

[@denisehaley9271]

​@@TheEDNC select carefully?? We don't have many choices.

[@debbiereiter3279]

I had an MRI because I was having the same symptoms my mom was having and she had chiari and syringomyelia but they said I didn't have it. But 10yrs.later I had a MRI for a pain shooting to my temple from a tooth problem and they found chiari!! So yes to that man's question.

[@brendalg4]

I was diagnosed with it. I had another MRI a week later. That doctor said I didn't have it.

[@denisehaley9271]

​@@brendalg4it doesn't go away. EVER

[@bearbait7405]

Thank you. I am gladdened by your recognition and acceptance of this diagnosis and treatment. Four years too late for me. Looking forward to seeing you again shortly. Blessings to you and your colleagues. *Dr Huang, C1-T1 fusion (revision) recommended by JH surgeon now and scheduled, but I am requesting diffusion tensor mri.

[@diannawilson4058]

Wow had my surgery in 2010. I had everything that could go wrong after surgery did... I still have difficulty but doctors think I'm crazy. God thank you for being on my side.

[@chakkakon]

I’d gladly pay for a qualified doctor to give me a second opinion of my ct scan. I have EVERY symptom mentioned for Chiari malformation caused by blunt force trauma yet a radiologist who graduated two years ago says there’s absolutely nothing wrong with ANYTHING on my scan, even a dislocated jaw , broken nose, and obvious brain swelling. I’m in excruciating pain everyday and now must spend at least 18 hours a day laying down.

[@ClaireNicole33]

May I suggest you request an MRI as soon as possible. It will show up on there. I have Chiari 1 and very symptomatic yet all the doctors I've seen in the past 5 years say my symptoms aren't bc of my Chiari. It's all clear on my MRIs. They just wanna prescribe antidepressants and send me on my way... It's been a nightmare. Good luck but keep pushing them till you get answers!! ❤

[@chakkakon]

ClaireNicole33 I got a ct scan on 11-29-19 but interestingly enough, every view, any view that would possibly show a Chiari malfunction is cut off. I have an appointment with a neurologist in 10 days and I’m praying he orders an mri of everything. If not, I’ll pay for it myself. They aren’t going to stand down while I live 24/7 in absolutely the worst pain I’ve ever felt in my 50 years on this earth. Thank you for your response. 💕

[@debbiereiter3279]

You need a MRI to detect Chiari.

[@ofbigcities]

I hope you figured this out but it’s possible you could have a csf leak. It can mimic chiari bc it also causes brain sag, so you have similar symptoms and the mri appearance looks similar. But you really need to have many people look at your imaging… it’s terrible. Fb groups are helpful

[@BohumilRajchl]

I am 34 was officialy diagnosed with Chiari malformation week ago. Before I had terrible headache/headpressure, dizziness, nausea etc… I have only 4mm and I have to risk operation because I cant function.

[@destinyshumate5143]

Did you have surgery?

[@hemandas5360]

Wow greatly articulated

[@acruzm1347]

I’m at 3 cm and I am experiencing almost ever symptom. I also have empty sella syndrome because of this. I’m in the ER often!

[@christophermurray2534]

My wife has had this surgery at Wesley medical center in Wichita ks and it's absolutely wrong f.u.b.a.r or whatever other adjective you can muster that is a synonym for cereal box surgery and her quality of life is terrible. I'm at a loss because I have absolutely no medical insurance and she is on disability and SSI and Medicare /medicaid and all the surrounding doctors won't help us. I've given it to God for the wisdom to help my lovely wife now I'm polling the audience. Any LEGIT advice is much appreciated. Please and thank you kindly. Good Day

[@denisehaley9271]

Same with me 😢

[@kedarkarmarkar1850]

I am a patient of Chiari Type 1 and syringomyelia for last 2 years and have been told to undergo decompression and Occipital fixation due to AAD in my case. I also have a congenital fused C3 to c7 (some syndrome) by birth. I have been advised for the "rod-wire fixation". Can you please advise/comment on the durability and benefits of that type of fixation? TIA.

[@cutiebabe36]

Find me on Facebook..I can send you photos of my hard where C1-c6..my c2 and 2 are completely gone.. it's painful at times but worth it. Better than b4. Khristina Hindmand.

[@joseevocalist]

Has anyone come across the Barcelona institute for chiari and Syringomyelia's Chiari 1 surgical treatment?

[@NENANY24]

What do you do to ensure that you are not preforming a Chiari Surgery on someone who is just a CSF leak and should not be having the Chiari Surgery and just treating the leak? In my experience I have talked to NUMEROUS patients who do not seem to have a full work up and told after that it might have just been a leak and that is why the Chiari surgery failed.

[@aricanto1764]

First GP i saw said misshapen skull was normal (I thought bullshit), next doctor said try physio (did it for 3 months - only temporary relief) finally second doctor said get an MRI... chiari 1, 10mm. Not particularly happy, but relieved as it explains the fatigue, difficulty sleeping, tingling of hands and feet, basically everything that I've struggled with over the past year. Will likely get surgery soon

[@martileonard8254]

Thank you dr. very much 😮

[@andreasmith9724]

I was told migraines through all this medication I was told to stop crying there's nothing wrong with me until I brought it into another doctor and he said I have chiari! I just wish it was somewhere in Michigan that I can talk with other patients that's going through what I'm going through!😢

[@denisehaley9271]

I'm in Michigan. Tuscola county. I've had 2 decompression surgeries.

[@leesin5826]

9 m cerebellum sagging 6 I have a headache for 7 years, my complaints especially when I sneeze when I cough I have pain in my head when I sneeze and sneeze while coughing in movements that increase body pressure

[@leesin5826]

I'm sick of suffering from it every day doctors don't know anything more annoying head pain I say your head pain is not so stupid doctors varki information about the disease olmıyabilir, but no head pain he claims as a joke .E

[@travishanson166]

What buggers me is doctors who know about chiari but believe they DON"T cause symptoms at all. I experience everything but vomiting on the symptom list from time to time (would be every day if i didn't severely limit my activities) and i have been told 2x now that "the chiari is not causing your symptoms" i also have three levels of cervical central stenosis and 2 levels of bilaterial foramenal stenosis...same story... finally got a ct angiogram. I won't be shocked if it shows narrowing and occlusion of vessels (especially through the foramen magnum) and they tell me my symptoms can't be explained by reduced blood flow leaving the brain....oh and empty sella without papilloedema and normal endocrine function at the time the blood was drawn.

[@koyaanisqatsi5163]

Same experience here, I have 5 mm herniation and told x2 by neurologists I have no Chiari. BTW I have all the classical symptoms plus some of the "rare ones" - my neck MRI is a mess as well and again that is not the cause of all my symptoms, I feel patronized and mistreated, at the merci of the medical establishment.

[@eScential]

Can it be dignosed without mri? Are mri done with pacemaker now?

[@denisehaley9271]

No.

[@loveKG26]

At least those in the states have health care that knows about these key facts in Canada I’m without I’m odsp and have seizures my necks bothered me since age 14

[@tailzzzzz]

Is the risk of adhesive arachnoidosis higher in older patients? Seems many on here are young. Also, can osteoporosis cause a 5mm tonsillar ectopia to become more symptomatic?

[@Wherewordsend]

I’m begging for help

[@Wherewordsend]

My surgeon isn’t practicing anymore

[@Wherewordsend]

I’m wheelchair bound

[@anneblubaugh58]

I’m so sorry 😢

[@helenhamill]

can i ask if you have many patients who have "central hypoventilation syndrome secondary to chiari malformation"? I have had full foramen magnum decompression, chemical meningitis, pseudo- meningoceles, CSF leaks and a VP shunt. I require a BIPAP during sleep. But i have never seen any expert on this condition.

[@denisehaley9271]

There are no experts on Chiari.

[@carlosresendez7754]

Also i believe most people have it but wont be reactive until a whiplash situation happens.

[@denisehaley9271]

That's bs.

[@mushtaqking6634]

Arnold chiari malformation bamari ka ilaj batay urdu

[@jessicafeliciano3285]

I feel like a have a bad head cold with no mucus at all. Lots of pressure in the head and ears that causes pain. I feel sick everyday but like I said before no mucus! Just sick and fatigued. I also have tremors that started in the chest and gradually moved to my head and other parts. It's anyone experiencing these symptoms with Chiari??

[@tailzzzzz]

I have tonsillar ectopia approaching 5mm, my most recent MRI in 2018. Head tremors as if I am nodding no until it lets up and starts again. Hand tremors too. No doctor will listen to me. They think this is psychosomatic since my granddaughter was diagnosed with chiari recently, but won't say so outright. All of these symptoms started prior to my ever hearing about chiari though and should be right there in my records.

[@Jill.Edwards]

​@@tailzzzzzpsychotropic medications can also cause movement disorders. Don't know if you are on them, but it's something to consider. It could also be related to your Chiari. I hope you find answers.

[@mwngw]

Is surgery a reasonable course for a 72 year old, even with many moderate symptoms?

[@ameegrant6055]

Live your life with moderate symptoms if you can perform daily activities. As she said surgery may not be a success if you have other issues.

[@CindyCyndiCinde]

Can removing the tonsils help with type 1?

[@denisehaley9271]

Not usually.

[@mushtaqking6634]

Arnold chiari malformation bamari ka ilaj