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Interesting listening to great minds explain in layman's terms. I hope these phenom doctors keep going in their specialties.

Urinary frequency, nighttime urinary frequency, insufficient bladder emptying, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Dystonia, double vision, fuzzy vision, non-epileptic seizures, spasicity, sharp shooting electrical pain in arms and legs, weakness, Scoliosis, hEDS, chest pain, tachycardia, heart fluttering, gasping, hiccups, spasms, deviated uvula, mild to moderate disc degeneration, sensory processing disorder, high functioning autism and 'superior' intelligence (tested by psychologist) in cranial cervical instability (?), leg weakness and more symptoms in my 21 year-old daughter. Thinking to start with a visit to see this doctor, rather than someone to strengthen ligaments in the neck...possibly the foundation is the problem which is causing pressure at C1-C2. L-2-L3; L-3-L-4 are dessicated. Im not sure all the terminology is correct or my remembering of the mri terms. She has done physical therapy, but when the pt doctor pressed on her mid back when there is a twist in her spine, it caused a full day of episodes (POTS-like weakness, then non-epileptic seizures that she let make her pass out...if she rearranges her head to a central position as the seizures weaken, she stays conscious and the seizures contiine. When she doesn't pull her head back to neutral, she passes out and the seizures stop.) She also has muscle twisting and passes out in her sleep, waking up feeling exhausted, blue lips, weak. Sometimes she has to try to waken herself up to 4 or more times.

I either have this (CCI) or something much much worse. All I know is that I have like 20 symptoms and I keep getting worse. The fatigue is tremendous.

Hola doctor ami me operaron ace tiempo pero los síntomas noseme quitaron

El Arnold Chiari tipo 1 es degenerativo? Si es así de qué factores depende?

I now have ocular hypertension because of prolonged pressure as a result of Chiari.

Most Chiari 1 patience have obstructive hydro but why do most Spina bifida patience with chiari malformation 2 have comunicaiting hydrocephalus?

I wish my doctor would acknowledge the obvious diagnosis of EDS in me or at least send me to a Dr that can diagnose . I have had physical therapist and other specialists tell my doctor that I am hyper-mobile. He just said he didn’t think I had it or at least not the vascular kind . But yet I have a paralyzed diaphragm and my blood pressure has been high . I’m extremely anemia and he hasn’t sent me to a hematologist, even though. I have had 2 iron transfusions in a year and half

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I have syrinx from 1974 car accident: the twisting of my spine destroyed every disc and created 6 slipped vertebrae; by 2007 the doctors put me on hospice; Three years later I stopped going to doctors, worked out my own plan, burst the cyst, straightened my spine, and have a wonderful life! No picnic! But my cyst continues to drain (2024) and I've developed a home method of chiropracty to keep my spine aligned.. I wish doctors would listen to real life solutions!

Did Dr. GREENFIELD say he did 700 surgeries or is it 700 Chiari surgeries total at the clinic????

Why do neurosurgeon think that after the surgery is done i should be better but unfortunately im still having major symptoms

I’m void of CYP2D6. I was prescribed so many meds for over 20 years I can’t metabolize. Plus MCAS, hEDS,

Solutions chronic pain & insomnia?

3 pfizer = pots too.

2002 I have many tests and finally an MRI. 3 Doctors my MD, a neurologist and a neurosurgeon. Now living in a whole new area. They did a MRI and said I do not have it???? Is that possible? I continue with symptoms. Muscles, headaches, neck pain is horrible. 5cm Balance, I can’t walk a straight line for nothing. And fall easily. Help! New mri is coming up, how can I ask my doctor to look for Chiari? Can it just disappear?

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.

This was intresting. My geadaches had gone on since age 8. Told.migraines. saw Neuro and was diagnosed with IH in 2001. Went into remission. MRI in 2011 (chiari found, no one told me) then symptoms got worse in 2019/2020. I was passing out while sat or led down. I was concious but my body was fitting , burning through my body, when my son shook me i came too. I could hear him crying (age9) screaming at me to wake up. Felt sensation of wetting myself but didnt. Neuro couldnt tell what that was. UK nhs is great but when you have something like this, no one tells you anything. I had no idea my neck pain/migraines were to do with chiari. Surgeon said its not bad enough to operate. I had no idea until now that all my "fibro" symptoms could be realted to my chiari

Wonderful presentation !

Is Dr. Miller in Boston referring to Robert Miller in Lawrence?

When you say finding a Dr to work with is "a problem for all of us" please know that what you're actually confirming is that it's a problem trying to find a Dr who is committed to healthcare, not the medical industry, and has the respect for patients to listen and believe that our experience is real, that we're smart enough to research on our own when Drs abandon us, and that we are the MOST reliable witnesses to our physical health, not the most unreliable witnesses. And that we are there seeking ATTENTION to our health, and DRUGS that we know are safe and effective FOR US. And we may very likely know this information better than you do. The medical industry has caused more bias-based harm than we'll likely ever know, because Drs are insulated and protected from being held accountable or liable for that harm. The ones harmed are aggressively silenced.

Very informative. I wish my Drs would take the time to hear it. Yes my living situation and mattress are big contributors to my sleep deprivation, pain, and disautonomia problems. What's the plan, where are the folks who give money to disabled people in the US to find more accommodating environments, buy healthy mattresses and pay for all the health aids to compensate for medical neglect and abandonment. Who's funding bite guards that cost $800-1000 WITH INSURANCE?Just wondering because I keep trying. This is killing people, and that IS harm, just in case the medical industry isn't aware.

I have it too God bless

This is brilliant. My drs in Scotland just don't understand. This helped me a lot

Thanks SO MUCH! Any update’s are appreciated as it’s saying on googling that it’s MIA3 gene variants/mutations that may cause hEDS and as You explained so many of us are hanging on the edge of the seat for the study to progress. Hot prayers for all interns, Who go on to achieve great things for the community. ❤

I have a 8mm Chiari Malformation also Cervical Stenosis C4 C5 C6 .Will an Anterior Cervical Disectomy with fusion at this level cure the Chiari?

In Australia the surgeons all cover up each other’s mistakes and use patients like none human Guinea pigs and I am one it destroyed my life my family. I have no love in my life anymore.

Anyone recommend a good Rhumatologist in UK 🇬🇧 im struggling very much , just awaiting to be diagnosed with Ankylosing Spondylitis as hla b27 and have all symptoms and sacral pain. But just looked on medical patient summary report and says Muskoskeletal Connective Tissue Disease in 2014. I was never told nor referred.

Forceps birth ...chiari nearly kileed me...can't help but wonder about the connections

Dr Bauer performed my decompression surgery. Feeling much better now. I still have symptoms but they are not near as severe as they were.

I have heard about Heart Rate Variability testing for ANS dysfunction for decades. How is it not mainstream by now? That tilt test is barbaric when positive.

En Barcelona (España) hay un instituto especializado se llama Institut de Chiari. Alguien conoce otro instituto o especialistas en LATINOAMERICA?

Lately I'm extremely sensitive to light & sound. is that natural with TC issues?

THIS WAS AN AMAZING PRESENTATION! BLESS YOU FOR THIS! Why don’t more people know about this! Share it far and wide!

Thank you for posting this video. Absolutely riveting. Dr Damadian's inventions, research and investigation have astonishing implications and impact on health care and recuperation. All glory and praise to the Lord Jesus Christ for saving Raymond Damadian, and giving him the insights and skills to accomplish all these breakthroughs. He was a 'living legend'. Maybe posterity will one day more fully appreciate his contributions to medicine.

Why does this doctor sound like he is down playing the symptoms of chiari?

Why not find out what caughing does to a chiari in terms of pressure by perfoming mri and video of the cfs flow while the patient with chiari is actually caughing.

Has anyone with chiari Malformation waken up from their sleep throwing up? Or what about if your legs start feeling sore to the point its uncomfortable to walk?

"There is no reason why adults cant tolerate it" re cpap....that's simply not true. I really hope science comes up with something better soon

Connection not studied: childhood vaccines and effects like these. Would be amazing but won’t happen

3:25 I am so grateful to hear these points made on imaging CCI patients. My CCI diagnosis was missed for years and it was only after imaging protocols like those mentioned here that my diagnosis was discovered. Thank you DR. Koby.

I am so grateful for people like Dr. Henderson who are speaking on behalf of patients and helping these conditions gain awareness. I spent 14 years without a diagnosis and treatment and it was by luck I found a physician that diagnosed and helped me access treatment for Atlantoaxial Instability and Cranial Cervical Instability. It is because of this that I am still alive and am incredibly lucky to have regained my ability to walk. This condition is often missed and in my case I was referred to specialists in Stroke, Ear, Nose and Throat, vascular surgery, Physiatrists, Headache, and multiple Neurologists. None who were aware of or screened me for this condition.

Is this doctor still in practice

I think I have a CSF leak into my left ear since 2010 I had hydrocephalus since about 2014 for sure when my horns were commented on by a DR or Dr assistant. Saying they looked like the devils horns. Only way horns look like that inside your brain is with hydrocephalus. They lies to me at a university hospital I assume now…. Years later in 2020 I got so sick been having horrible increase in head pain pressure and new dizziness…. All chalked up to be epilepsy still. At least I got some steroids that helped immensely. Even went seizure free for over a year after ten years straight of no changes….. My neuro didn’t even care…. Glad that nystagmus is gone and a lot of the headaches for these past years but starting g to come back like I suspected and I have no way to get proper treatment diagnosis even slim acknowledgement… Going into seizures while awake before steroids it was only in my sleep while I’m squishing brain stem as I sleep making it dangerous… now it’s worse maybe? I assume I’m having stoke like seizures after syncopal events. My necks so tense each day it cracks everywhere I had a X-ray tech say I has cysts all through my neck it’s just super scary. My sons now 9 this week. I just had stats in my eyes after blowing my nose.

I had hydrocephalus so bad it was a long ride through I think steroids helped immensely they even stopped the seizures for almost 2 full years I’ve never went seizure free… my neurologist in Toronto Ontario ignored my requests to search for inflammation or neck issues and years ago a image done there seen hydrocephalus with my horns being longer and shaped like a devils…. I didn’t know that meant hydrocephalus back in 2014 or so but remembered the comment made about the horns in me. By early 2020 my head had been in constant headache with worsened pain new pressure and dizziness…. All chalked up by specialists I’ve been able to see to be epilepsy well now if you leave a person with hydrocephalus for the ventricles to enlarge as they were in my head I could feel them pressing on my brain…. The DR here at local hospital said my ventricles were huge very huge brain very tiny…. He gave me some steroids antibiotics and some other things…. Weeks after that I woke feeling completely better it was weeks after the IV steroids but wow a huge change from goi g to bed and waking up to no pressure nothing. I still strictly have only the ridiculous epilepsy diagnosis it can’t be the only thing but definitely make a person into an epileptic I mean I feel for the treatments and no help regarding neck chiari hydrocephalus inflammation brain stem…. They want you deemed epileptic and put on the magic pills that people say are no good for us…. Gotta make money one way, the big pharmaceutical way….. Human health not cared of apparently after experience with them.

No foundations like this where I live.

VERY VERY SEXY TOES 🔥🔥🔥

Thank you for this presentation it is one of the most outstanding I have seen on MCAS.

I’ve had seizures neck pain hydrocephalus but only epilepsy diagnosis… X-ray tech said I’m full of cysts in my neck….

I was recently diagnosed with IIH and have been to by neurologist ophthalmologis i am a candidate for a stent and am absolutely TERRIFIED when reading on how it goes it