Honestly was going to play this in the background to go to sleep... BUT THEN HE STARTED DROPPING INFORMATION BOMBS SURROUNDING CELIAC ETC, and slide after slide adding more. Got to fix my diet now!!

Bless you

I received a FMT a month ago, and I am grateful for the opportunity! I have never felt better 😌 🌝❣

I've had adhesive arachnoiditis for decades this curse even made my bladder collapsed straight to augmention cystoplas I've had five spinal surgeries even spinal simulator fully implanted we are hospitals dirty secret animals are treated better at least when they are bad can be put to sleep us torture now my mind is just on death nobody cares that's it

I wish there were more talks about syringomyelia without chiari in hEDS. I am suffering so badly but local doctors don't know what to do with me.

I was bragging about Dr Grant to my Neurologist. I don't know him but I love his videos

Wonderful talk. More people should follow what Dr. Barth Green says.

I had my decompression surgery after these horrendous headaches-I'm sure that other Chiarians can relate. I don't think I've ever felt that good before. Good luck to you all!

Thank you so much

Another blow hard talking smack about chiari. I don't believe ANY of you know anything. I've had 2 PFBDS with duraplast and removal of lower portion of cerebellar tonsils, 4th ventricle shut off. Now I'm WORSE than I've ever been and symptoms continue getting worse.

Thank you so much for your information definitely i will follow your guidance and i will recover soon from my neuroinflamation (peripheral neuropaty) thank you doctor

Dr. Oro: Really appreciate your great talk. Really helped my understanding. Thank You

Finally...research in this most critical area. I have been suggesting research since undergrad studies at UW 30yrs ago. PHD Garmase agreed. Thank you

I was diagnosed with Chiari Malformation type 1. Feb 27 2022. Fast forward to Today. I’m begging you please look in to Traditional Chinese Medicine. Please. After 4 months of suffering and 3.5 months of self healing I have never felt better in my life!!!!!! I still got work to do but I will 100% be better. DO YOUR RESEARCH. THERE IS ANOTHER WAY TO HEALTH!! #1 Diet is EVERYTHING!!!!! #2 Find an Acupuncturist!!!!! #3 RESEARCH RESEARCH RESEARCH RESEARCH RESEARCH!!!!! I hope all of you special Chiari Warriors feel better soon!!!!! WISHING YOU ALL STRENGTH AND POWER!!!!!!!! ❤️❤️❤️

Excellent presentation. Thank you.

Dr grant is monster. A piece of shit. He ruined me botched surgery.

Thank you. Assume: (1) 16 year old boy, (2) 8mm distention, (3) chronic, debilitating rear head headaches as well as migraines (chronic nature began apps. 1 year ago, prior thereto, one migraine per month). No other major quality of life symptoms. What is the ballpark percentage for when each of the following are used if performing a decompression: (a) duroplasty/patch, (b) removal of c1, (c) removal of c2, (d) tonsil reduction. Thank you.

Thank you for your time and effort, great presentation - how I wish the neurologists I've seen knew at least some of this information - I've been told my 5 mm tonsils herniation is not the cause of all my symptoms - basically all the ones you've included. Please continue educating all of us patients and providers.

Very informative. Thank you 😊

My Wife is having Syringomalia, She was diagnosed with TBM-MDR, we all lost hope of her survival but she is a fighter, she got cured from the same but the medications were very devastating for her Body. Due to heavy dosage steroids she had to undergo Bilateral Hip replacements and post that now she is in pain because of Syringomalia. Hope to see such support groups here in India too...Doctors here are prescribing symptomatic medications and has advised supervised neglect...Hope to see some cure...

Thankyou for this video. It is so nice to finally have understanding of my symptoms I have been experiencing my whole life but never understood until mri revealed I have this, so I am now researching my condition. This is excellent video of information. Thankyou.

Blessed Be Beautiful Souls My fellow Chiarians I have endless love for you ALL

Dr Ulrich, can a thoracic syrinx reduce the spinal nerve conductivity; therefore, creating problems with walking ( intermittent signals from brain to legs) ?

This explains, me.

Thanks for your video, Dr. I believe I have AA. I just wish I could get a post-surgery MRI following my L4-L5 discectomy in March 2020 (which was supposed to be left sided but ended up being bi-lateral). My surgeon refuses to give me a post-MRI even though I am in worse chronic pain post-surgery, falling over again, taking prescribed Fentanyl and walking with crutches for last 18 months, unable to work... I live in the UK and had surgery under the NHS. I'm baffled🤷‍♀️

Thank you.

This woman is an amazing researcher

cannabis was able to relieve my pain, but the trade off of alerting perception is something to consider. very strong cbd doses without thc may be the key. was the only thing that's ever relieved the pressure headaches and body pains

Great Video! I was diagnosed at 33 after years of migraine severe low blood pressure and syncope. I always had massive head & neck pain, but I noticed a huge increase in symptoms after the birth of my daughter. 3 hours of pushing nearly did me in. I would love to know if any or patients had similar problems. Five years after the birth I could no longer stand the pain and was concerned about the syncope especially driving. The doctors at MGH operated one week after diagnosis and saved my life, forever grateful for those who are committed to finding answers for rare conditions.

Also a lot of women are finding the peak at menopause. Im guessing because the lack of estrogen causes looser ligaments. My neck started about 2 years post menopause

Thank you for the information. I only wish more doctors took advantage of your videos.

What about sudden weight gain?

This is an excellent presentation. Covers essentialy everything I have been experiencing. Today I met with a new doctor and asked him to look at my recent MRi images, as soon as i saw the malformation, i just simply pointed at it and asked him what that was. He blurted out chiari malformation. He was the 7th doctor to look at the image. If chiari is confirmed and treated in my case, you may add oliguria to the list of rare symptoms. It has started with me recently, with exertion while being fully hydrated and unable to sweat, or not sweating to normal amounts for the temperature and work. Also on some really hot days I have not been bothered by the heat, no thirst, no discomfort etc. 100 degrees felt like 70 or feeling cold at 80. Always co-committant with exertion sufficient to increase blood pressure or flow requirements under normal metabolic conditions.

Permanent ilaaj chutiyo tum log bhi nahi sari sakte

I have tonsillar ectopia 'approaching 5mm', but not quite there yet. Pressure at the base of my skull was the reason for that 2014 MRI. Seven years later now, and the neurologist is blowing it off. I'm now 56 now, have macular degeneration...which I've read chiari can cause drusen to appear. Osteoporosis now too, so more pressure on that area. I'm basically preparing to go blind.

This is a revolutionary presentation, truely amazing.

This man really gets it! I hope he's taking new patients! It will be a bit of a drive, but it seems worth it. I've been doctor searching for so long, it's the dismissive doctors pushing me over the edge, not my medical problems! I'm praying this doctor can diagnose me and get me some help!

Thank you for posting this and for giving this speech. Lots of new information in this video! I'll have to watch this one a few times to absorb it all.

OK so my question is this... Are you treating the neuroinflammation inside the spinal cord with meds that cross the BBB before and AFTER surgery? As with any procedure, wound, trauma to the body.. Inflammation will occur! The problem with NI inside the spinal cord is if not treated then AA adhesive Arachnoiditis can/does progress. The patients who did poorly after surgery.. Perhaps try treating their pain, NI inside the spinal cord and using meds for nerve regrowth? More info on this is at arachnoiditishope.com 😉 I have had AA for over 31yrs now in thoracic, and over 26yrs in lumbar from epidural during labor which BTW can be another cause of AA. It took me 22yrs before I was properly dx with AA. I also have Tarlov Cyst Disease. Have you had any benefits with treating patients who have AA and Tarlov Cyst Disease?? Thanks so much for this video!! Very informative.

Oxycodone is a the medication for Pain the only place to get hold of it with prescription is at , pharmacytechmeds.com

Would enjoy some input, trying to get info. Between chiari and ongoing breathing issues chiari surgery 2012 and in 2018 after a splenectomy ended up on 24\7 oxygen now hearing could be steming from chiari this whole time?? Would love to pick your brain.

Cut out carrageenan right away. A toxic addititive in our food.

I heard about the amazing herbal service Madidaherbal center renders then I purchased a herbal medicine from them. I used the herbal medicine for 2 weeks and few days, it was so infective and it cured me permanently...you can WhatsApp Dr Madida on +2348071-333-118 or email:Madidaherbalcenter@ gmail. Com.

Thank you for doing this on MCAS. All your videos are *extremely* informative...and I wish other doctors would get up to speed.

Thank you so much for this video. As a parent of a child with chiari this really helps to make sense of some aspects of our experience. My daughter used to have the respiratory fits you mention, particularly in the few months immediately after decompression. Her neurosurgeon dismissed the episodes immediately as "hysteria" which was infuriating. Fortunately those episodes eventually stopped.

I had undiagnosed Chiari - I had an epidural and pushed for an hour. Immediately after I developed POTS and became extremely symptomatic

I dont know if its chiari that I have. The neurosurgeon called it cerebellar tonsilar ectopia 3.7mm. I tell her my symptoms and she said it might just be fibromyalgia or depression. Im in constant pain. I wake up with a headache and fall asleep with a headache. Get migraines about 4 times a week. My whole right side of my body is tingly. I have tingling on the top of my head. I have control of my right hand but it shakes sometimes. I drop and break a lot of things. I have too many symptoms to put on here. She ordered an antidepressant. A cervical spine mri because my neck and shoulders are stiff. I think because I'm on medicaid that she doesn't really care. I have been on the antidepressant for 4 days and all I seem to get out of that is sleeping at random times of the day. No help with the pain. 🥺

My son did have decompression with fusion head with C1 - C2 and Chiari malformation I , with Dr. Rikate six years ago and my son is having a normal life after surgery thank Dr Rikate and staff

Interesting for sure!

My Syringomyelia was found when I had MRI just before surgery on herniated disc. The doctor who was supposed to operate then refused as he thought the Syringomyelia was the root of my pain. So I was then passed back and forward for next 3 years before any would operate on disc problem. When I still had pain after operation I was more or less told that I was faking it and the main treatment they proposed was to go into rehab to reduce my dependency on pain relief. The pain meds are the only reason that I am able to bear this horrendous disease. Doctors generally know nothing about this condition. On one visit to pain clinic I was basically told to stop being lazy and get a rowing machine. With Syringomyelia you need to avoid anything too repetitive that would put strain on your back. Needless to say I have not been back to see that doctor. Keep changing until you find health care professionals that believe you, the others are just a waste of your time and energy, not easy I know. We have recently moved house and had to move from a wonderful GP to another who now treats me as a lazy drug addict, so I'm now looking for another GP.