Symptomatic Chiari Malformation and CCI

[@Monette7812]

Is there any way to relieve pressure and pain in the brain ears and neck without surgery?

[@vids1661]

You should see someone who has good experience with craniosacral therapy. If youre around Vancouver BC I can make a recommendation

[@LisaMitchellGD]

This is a great video . I was just diagnosed with this condition and actually admitted to the Neurology unit for observation..the headaches and neck pain and other symptoms have been brutal

[@LisaMitchellGD]

Just subscribed. I can tell You are truly a Physician who cares about people

[@SarahEWalsh]

I was diagnosed with CCI with cerebellar ectopia from injury. Having trouble finding surgeon to help with that and the 10 mm synovial cyst by my brain stem. Oy! Once treated by Dr. Bashir, however, it wasn’t helpful being that I have all the other stuff going on and needing fusion surgery. Having issues with C0.

[@anythinggoes5574]

Who diagnosed you and what scan did you get? Can you list some of your symptoms for me please, Sarah?

[@allisong2159]

Are there any studies out there for EDS/CCI/Chiari right now? I feel like I would be a good study case. I have 2 girls who also have all of these issues. I am really getting frustrated with doctors totally dismissing my symptoms and saying Chiari 1 is not a big deal. I am having a lot of Chiari symptoms and they are getting worse.

[@Wherewordsend]

I’m screaming this one but nobody is listening

[@allisong2159]

@@Wherewordsend Sending you virtual ((hugs))

[@kassi4837]

Same boat seriously. Wishing you answers and effective treatment!

[@jen0667]

Dr. Anne Maitland, MD, PHD has videos on KZbin about this subject.

[@aliciaparker7238]

Have you gotten any help. I'm having the same issue and 2 daughters I think have it as well.

[@andream8176]

What it you’ve already been fused C0-C2 and still spontaneous CSF leaks out of your nose? Can you still have treatment?

[@putDiet]

On a tab on a graph what is the depth and lenth in mm mean? Why dont add explanation?

[@Wherewordsend]

I’m literally begging for help. Klinge was my surgeon and she’s not practicing right now but I am suffering sooooooo terribly!

[@SteppesoftheLevant]

Thank you for this video!

[@loveKG26]

I can’t even get a diagnosis in Belleville Ontario Canada I’m sick of the pain pressure stiffness cracking seizures syncope. Now it’s been almost 20 yrs since it began to hurt. About 15 years of seizures now. Steroids gave me almost 2 years seizure free. A lot of headache pain dizziness pressure in head gone still mostly. Hydrocephalus is possible as imaging seen very large ventricles compared to brain. Sad.

[@49598588dk]

I'm scheduled to have my MDB treated by Dr. Centeno in March with stem cells but just wondering - is there any way to diagnose a damaged MDB through imaging? (I don't technically have Chiari but did have CCI prior to a C1/C2 fusion. My current symptoms seem to fit the cascade effect of MDB and suboccipital muscle dysfunction.) Thanks for this explanation!

[@centenohome]

Maybe. The MDB is hard to visualize even on 3.0T MRI, that's why it was likely missed for centuries by anatomists. The only thing we can confirm is dysfunction of it causing kinking at the posterior dura on flexion-extesnion upright MRIs. Scott Rosa in NY has the experience to do those studies, see rosaclinic.com/scott-rosa/

[@Monette7812]

What does it mean if someone that has Chiari malformation gets an mri but the spinal cord does not show up on the brain scan

[@LilJarvan]

What do you mean? Spinal cord extends down from the brain, its not part of the brain itself. If you want to see your whole spinal cord you would need a whole spine MRI. That is cervical spine MRI + thoracic spine MRI + lumbar spine MRI, maybe on discount if all at once. But each MRI takes around 20-30 minutes, so take it into account.

[@draggeddownbystone]

How do I get a doctor to take me seriously on this? Where are you at, and can I come see you?

[@loveKG26]

Imagine this but having seizures so it wrecks even further with random falls and jerks. It’s only epilepsy. That’s all they want to say. Why? Why do they ignore my neck? It hurts….

[@lizziehyde2431]

I’m curious if herniations and compressed vertebrae would contribute to issues with csf flow? I have a Chiari 1 but it was discovered after I had a c7 compression fracture and simce developed a herniation at c5/c6 and more symptoms in recent years

[@tashamcmahon251]

Same