CSF presents If It's Not Chiari, What Else Could it Be?

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"If It's Not Chiari, What Else Could it Be?" addresses the differential diagnosis of CM I. Lecture given by Dr. John Oro at the Cleveland Chapter Meeting in March 2012.
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[@lacyreeves6696]

This is an excellent lecture, it explains a lot of my problems. I know I have chiari malformation and intracranial hypertension. I got mine from a brain injury, its taken a long time to get where I am at, now it's the waiting game. I hope anyone else going through any of the above mentioned, have hope! I have had many doctors tell me that it was all in my head mentally. They were wrong even though I do suffer from ptsd. Don't even think about giving up, I've been at this since I was 22 and I just turned 30. I have hope of finally getting insurance so that I can be seen at the Chiari Institute in New York.

[@judycampbell7681]

Lacy Wilcox

[@sammoo5300]

What king of Chiari institut in NY???

[@BrittanyJean88]

Thank God for the discovery you made & also you being able to get insurance! So happy for you. I wish I was still on the East Coast I feel like I trusted them more there & they knew more 😅 I lived within an hr or so of New York & compared to where I am now I wish I knew it was gonna get this bad. I left randomly because of DV in my family. I had found out around 20 years old I have chiari 1 malformation because of my migraines, they gave immatrexbut it didn't do anything really. Then they were going to do surgery at 28 but I chickened out & literally thought it would go away & didn't take it seriously thought I'd be fine. I'll be 36 in May and I'm not fine. I've also got several spine issues that I'vedealt with for aroundthe same amount of time (was gr 1 now gr 2 anterolisthesis, left convex scoliosis etc) & it all just hurts so much, the pressure & sharp pains in my brain & neck are terrible. I've been in bed mostly for the past year besides to attempt to eat dinner & try to shower or go to the bathroom I just thankfully saw a nuerologist last week & they want a new MRI of my brain & spine & I guess we'll go from there... I kept looking back at my comment & I tried my best but I'm so all over the place. It's definitely not how I wanted it to be 😂. Anyhow I hope God blesses you & anyone reading this & I hope everyone can get help for their health issues & has doctors that actually listen to them & we can be pain free one day 💜💜💜

[@slemdlem]

So much information here.

[@dalepremier]

Great lecture

[@gavinsmith6658]

I like you so much! Thank you for this talk. It was so helpful!

[@xxgoodnevil17xx]

Thank you so much for this lecture it was super informative!! Will help me figure out my pain.

[@blackbearhomestead]

Thank you

[@kmelodyg]

This was extremely helpful. I have Chiari and my doctors have me on a "wait and see" approach. We do not want to do the surgery yet. There are many more avenues to explore first. I have heard wonderful things about Dr. Oro and am glad that I was able to see him lecture on this.

[@Tonelli2121]

I know this was from a long time ago, but I was curious what you ended up doing

[@ufcfighter1488]

And what other avenues are there?

[@tenminutetokyo2643]

High grain diets also increase adipose fat, which increases inflammation, etc.

[@sandywhat2429]

I have to say (in my own experience and thoughts) its much more than just wheat or flour, its all grains like wheat, corn etc. but other factors that can cause inflammation like drugs/pharmaceuticals and other inflammatory issues.

[@MotoDoug]

Headache starts in 2002, decompression surgery in 2008 (doesn’t change anything). Come 2022 and want to improve general health so I start Keto diet. 10 days later headaches gone and haven’t returned after 2 years.

[@kalijuri]

My cervical spine was injured by a dentist. It affects my lower back. So top issue effects rest of spine.

[@nanallen1]

@kalijuri Hope this note reaches you. After a cervical spine/ sacrum injury in 1998 ( bed ridden one year) I took a deep dive into this mystery. Included 3 expert neurosurgical appointments, writing to researchers, etc. Also literature from the craniosacral chiropractors, more. Here is what I learned : the sacrum and occiput have a reciprocal motion that pumps spinal fluid back to brain against gravity. ( brilliant detailed text : Chiropractic : The Anatomy and Physiology of SacroOccipital Technique by Jonathan Howat - asked the neurosurgeon expert in tethered cord to read this . What did he think ? Walked around room, looked out window , “It will take 20 years.” That was 17 or 18 years ago.) But also important is the function of the jaw, which interplays and reciprocates with the occiput and upper neck. Yes, my jaw got pulled out of position ( by neck/ occiput problem) and I developed a constant fine jaw tremor. Flew to see the expert in this area of jaw and neurological symptoms - Dr. Brendan Stack, DDS. Brilliant doc. He developed techniques for bracing the lower jaw that reduced or eliminated neurological issues. ( see his videos on you tube). Had MRI of jaw - the discs at the TMJ had slipped inward. Had appt. with the surgeon who has moved TMJ discs back to position ( prior to jaw appliance application ). He told me : people who have there TMJ discs slip forward have more pain, few neuro issues, but people who have discs slipped inward have more neuro symptoms, less pain. ( true for me) The spine is supported by the sacrum, to which it is attached. So people who have issues with an unstable sacrum can have back pain. ( Alan Lippit, MD did a lot of work in this area. ) But all of these structures mentioned influence each other, and an issue in one area acts like a domino effect and affects other areas. Craniosacral work and body work with a traditional osteopath helped me. Why was I particularly susceptible to all of this ? Probable mild Ehkers Danlos. Also, Chiari expert neurosurgeon found I have : a small,posterior fossa, short clivus bone, steep angle of the tentorium, but no classic Chiari. Nevertheless, the CINE MRI showed reduced spinal fluid flow in lower brain and CSF jets in upper neck. Sorry for long post, but I hope this understanding is helpful.

[@kalijuri]

@@nanallen1 thank you for that insightful response! i will look up those resources. Good health to you.

[@nanallen1]

@@kalijuri ❤️

[@Fireoflearning]

Wouldn't humans have adapted biologically to grains within the past 10,000 years in the same way we've adapted to lactose?

[@MrDeterministicchaos]

i have a question ? i have low bp and low temp leak in ear. from neck surgury and posible syringiomylia what causes the low temp. and chest pain heart palpitations. heart all normal

[@BobbyJonesCSF]

Somethign masquerading as a heart condition sounds a little like orthostatic intolerance and chronic fatigue. Watch more about what SEA Board member Dr. Peter Rowe has to say about it: kzbin.info/www/bejne/nGrHd2l-ba2eobM

[@dana102083]

Pots and a spinal fluid leak could also explain those symptoms.. Except im nit sure what "low temp leak in ear" means but stand by my choice. Theres a video on csf leaks by dr ian carroll. He asks people to point people to it. Here i am. kzbin.info/www/bejne/h6rZiKull9Z-qMU good luck!

[@VeteranNikky26]

Can Chiari be passed down from a parent my father has it and had to have surgery. I have been having headaches and neck pain since I was a child now I have numbness on my hands and feet sometimes my left eye goes black my ocular nerve is swollen my eye Dr was worried about me after I told her my symptoms and the fact that my dad has it scared me because even before I told her about it she asked if I was ever diagnosed with Chiari she told me to go to the ER Right away but I know it’s not easy to diagnose so im worries it will be missed I don’t even know where to start!

[@cecilyecily]

You should really find a chiari specialist. Many doctors even neurosurgeons dont know enough about Chiari to properly diagnose. I am fighting to get to john hopkins

[@Jkstolz]

Can chiari malformation cause eye seizures or ocular migraines? Facial numbness and temporary facial paralysis?

[@8thleostellium734]

First this info is amazing but scary stuff. Oh my yes I have all that but also tons of adipose little bumps of different sizes from head to toe lately tons popping up all over. Very scared very worried and very curious if it could cause partial focal seizures, ocular migraines, the facial numbness and I also have some limb numbness but not every time... and episodes of confusion after having the partial focial seiz or really bad headaches? Before Being told about dercums I thought I maybe could have PCS cuz I do have a mirena...... wow and drs tell me my tonsils are huge usually are shocked at how much they hang 🤦🏼‍♀️ they just tell me it’s lupus and pump me with prednisone and I just become worse and worse vicious cycle. Fingers crossed I can find a dr near me at my wits end. Thanks for all the knowledge

[@joshuatmorton5716]

Yo I think I have this or something similar. Over the past few days I have been applying traction to my cervical spine and I feel like I have wayyy increased sensation and strength in my face and neck. Like for example my tongue is strong enough to facilitate swallowing with enough pressure to drain my sinuses. Also have way more saliva. All these are in addition to significantly reduced ICP... Now more racing thoughts and my vision and smell are like high def now lol.

[@tiffanyryan5578]

Yes!

[@cecilyecily]

Yes

[@MichelleMartinez-ei1bp]

My MRI showed cerebellar tonsil extended 5mm below foreman what's that mean

[@dana102083]

Do you have a headache that is worse when upright?

[@MichelleMartinez-ei1bp]

@@dana102083 no I dont have the headaches anymore just whole right side head pain ear pain jaw pain

[@MichelleMartinez-ei1bp]

@@dana102083 it also hurts 5o swallow right side my right leg hurts from butt cheek down

[@carlacorrales3065]

@@MichelleMartinez-ei1bp yup i get those too

[@cecilyecily]

It means you need a chiari specialist

[@sandywhat2429]

Dr. John who? Who is this?

[@mq1712]

Highly respected surgeon and researcher. Very nice guy, the real deal.

[@laurieriley7736]

@@mq1712 WHAT US HIS NAME????

[@laurieriley7736]

sorry - what is his NAME? Where is he located?

[@theresageiger584]

NO NSAIDS EVER