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Chiari & Syringomyelia ASAP.org
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Добавлен 17 мар 2015
The American Syringomyelia & Chiari Alliance Project (ASAP) is the leading 501(c)(3) donor- supported organization dedicated to promoting awareness, advancing research, and providing support to individuals and families affected by syringomyelia and Chiari malformation. ASAP aims to improve the quality of life for those impacted by these conditions through education, advocacy and collaborative initiatives with the medical community.
The ASAP Annual Conference is our most valuable resource available. This event brings together leading experts, researchers, medical professionals and individuals affected by syringomyelia (SM) and Chiari malformation (CM) and related disorders for a collaborative exchange of knowledge, insights and support.
Watch presentations from our latest conferences for free on this channel.
Follow and subscribe for support group information, updates on the latest research and much more.
www.ASAP.org
The ASAP Annual Conference is our most valuable resource available. This event brings together leading experts, researchers, medical professionals and individuals affected by syringomyelia (SM) and Chiari malformation (CM) and related disorders for a collaborative exchange of knowledge, insights and support.
Watch presentations from our latest conferences for free on this channel.
Follow and subscribe for support group information, updates on the latest research and much more.
www.ASAP.org
2023 ASAP 35th Conference "Primary Spinal Syringomyelia" Dr. Batzdorf
2023 ASAP 35th Annual Chiari & Syringomyelia Conference
San Diego, CA
Title: "Primary Spinal Syringomyelia"
Speaker: Ulrich Batzdorf, MD
David Geffen School of Medicine at UCLA
Department of Neurosurgery
Los Angeles, CA
www.ASAP.org
San Diego, CA
Title: "Primary Spinal Syringomyelia"
Speaker: Ulrich Batzdorf, MD
David Geffen School of Medicine at UCLA
Department of Neurosurgery
Los Angeles, CA
www.ASAP.org
Просмотров: 97
Видео
ASAP Chiari & Syringomyelia Conference
Просмотров 1003 месяца назад
ASAP Chiari & Syringomyelia Conference
ASAP Chiari & Syringomyelia Conference
Просмотров 1663 месяца назад
ASAP Chiari & Syringomyelia Conference
2023 ASAP 35th Conference "Psychological Impact of Chronic Illness" K Lester, PsyD
Просмотров 1573 месяца назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego, CA Title: "Psychological Impact of Chronic Illness" Speaker: Kate Lester, PsyD Director, Neuropsychology Global Neurosciences Institute San Diego www.ASAP.org
ASAP Chiari & Syringomyelia Conference
Просмотров 793 месяца назад
Joins us in Durham, North Carolina at Duke University for ASAP's 36th annual conference on July 16-18, 2024. Our first-time attendee, Sarah had wonderful things to say about her first experience at an ASAP conference: "This conference is special because of how you can meet with all the different doctors from around the country. They are so readily available to talk to you. They have multiple Q&...
2023 ASAP 35th Annual Conference
Просмотров 953 месяца назад
Title: The Controversy Speaker: Erol Veznedaroglu, MD
2023 ASAP 35th Annual Conference
Просмотров 1123 месяца назад
Title: The Controversy Speaker: Erol Veznedaroglu, MD www.ASAP..org
2023 ASAP Conference Dr. Plonsker "Variations in Presentation/Management of Pediatric vs Adult CM"
Просмотров 35611 месяцев назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego, CA Title: "Variations in Presentation and Management of Pediatric versus Adult CM" Speaker: Jill Plonsker, MD Senior Resident UCSD Dept of Neurological Surgery San Diego www.ASAP.org
2023 ASAP Conference Dr. Lazareff "Chiari in low and middle-income countries"
Просмотров 12011 месяцев назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego, CA Title: "Chiari in low and middle income countries: a proposal for action" Speaker: Jorge Lazareff, MD www.ASAP.org
2023 ASAP Conference Dr. Oro "Beyond Chiari & Syringomyelia"
Просмотров 24511 месяцев назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego, CA Title: Beyond Chiari & Syringomyelia Changing your focus to longevity Speaker: John Oro', MD, FAANS Denver, CO www.ASAP.org
ASAP 2023 Conference Dr. Bolognese "Craniocervical Instability"
Просмотров 1,1 тыс.11 месяцев назад
2023 ASAP 35th Annual Conference San Diego, CA Title: "Craniocervical Instability" Speaker: Paolo Bolognese, MD Chiari EDS Center, Mount Sinai South Nassau www.ASAP.org
2023 ASAP Conference Dr. Iskandar "Hydrocephalus and CSF Shunts..."
Просмотров 22311 месяцев назад
2023 ASAP 35th Annual Conference San Diego, CA Title: "Hydrocephalus and CSF Shunts: Association with Chiari I, current challenges, and outcomes" Speaker: Bermans Iskandar, MD Dept of Neurological Surgery University of Wisconsin - Madison www.ASAP.org
2023 ASAP Conference Question & Answer Session
Просмотров 14711 месяцев назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego, CA Question & Answer Session Friday July 28th Speakers: Drs. Maher, Patel, Kelly, Crawford & Levy www.ASAP.org
2023 ASAP Conference Question & Answer Session
Просмотров 14511 месяцев назад
2023 ASAP 35th Annual Chiari & Syringomyelia Conference San Diego CA Speaker Panel: Drs. Heiss, Levy, Oro, Yang, Batzdorf, Ravindra Friday, July 28, 2023 www.ASAP.org
2023 ASAP Conference Question & Answer Session
Просмотров 19711 месяцев назад
2023 ASAP Conference Question & Answer Session
2023 Conference Question & Answer Session
Просмотров 20111 месяцев назад
2023 Conference Question & Answer Session
2023 Conference Question & Answer Session
Просмотров 26511 месяцев назад
2023 Conference Question & Answer Session
2023 Conference Dr. Kelly "The Decision - Making Process...with progressive scoliosis & CM"
Просмотров 20711 месяцев назад
2023 Conference Dr. Kelly "The Decision - Making Process...with progressive scoliosis & CM"
2023 Conference Dr. Klinge "Occult Tethered Cord..."
Просмотров 1,6 тыс.11 месяцев назад
2023 Conference Dr. Klinge "Occult Tethered Cord..."
2023 Conference Dr. Crawford "Pain Profiles in CM and Management"
Просмотров 32511 месяцев назад
2023 Conference Dr. Crawford "Pain Profiles in CM and Management"
2023 Conference Dr. Yang "Craniocervical Anatomy in Black & White"
Просмотров 21211 месяцев назад
2023 Conference Dr. Yang "Craniocervical Anatomy in Black & White"
2023 Conference Dr. Patel "Historical Perspectives, ... Management in our Chiari Patients"
Просмотров 16411 месяцев назад
2023 Conference Dr. Patel "Historical Perspectives, ... Management in our Chiari Patients"
2023 Conference Dr. Ravindra "Morphological/Ultrastructural Investigation....in Children with CM"
Просмотров 6911 месяцев назад
2023 Conference Dr. Ravindra "Morphological/Ultrastructural Investigation....in Children with CM"
2023 Conference Dr. Maher "Participation in sports with CM"
Просмотров 15411 месяцев назад
2023 Conference Dr. Maher "Participation in sports with CM"
2023 ASAP 35th Annual Conference Dr. Levy "Syrinxes Resultant from Trauma..."
Просмотров 33411 месяцев назад
2023 ASAP 35th Annual Conference Dr. Levy "Syrinxes Resultant from Trauma..."
2023 ASAP Conference Dr. Heiss "Study of the Natural History of CM/SM"
Просмотров 31311 месяцев назад
2023 ASAP Conference Dr. Heiss "Study of the Natural History of CM/SM"
2023 ASAP Conference Dr. Grant "Chiari Surgery"
Просмотров 1,1 тыс.Год назад
2023 ASAP Conference Dr. Grant "Chiari Surgery"
ASAP Chiari & Syringomyelia Conference
Просмотров 1,4 тыс.Год назад
ASAP Chiari & Syringomyelia Conference
Dr. Grant is the best!
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🤷♀️
I totally understand 🫂. I'v been in a living hell for 10+ years now. I had a 3 level lumbar fusion with rivison on L4 5 in March of 22. My pain is unbelievable! I live in the bed now. I haven't driven since last February. Pain medicine isn't touching my pain. I know it's my si joints 💯. But there's something else going on.
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.
You have Syringomyelia?
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!