Chiari & Syringomyelia ASAP.org
Chiari & Syringomyelia ASAP.org
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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
Переглядів: 77

Відео

ASAP Chiari & Syringomyelia Conference
Переглядів 952 місяці тому
ASAP Chiari & Syringomyelia Conference
ASAP Chiari & Syringomyelia Conference
Переглядів 1542 місяці тому
ASAP Chiari & Syringomyelia Conference
2023 ASAP 35th Conference "Psychological Impact of Chronic Illness" K Lester, PsyD
Переглядів 1472 місяці тому
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
Переглядів 722 місяці тому
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
Переглядів 812 місяці тому
Title: The Controversy Speaker: Erol Veznedaroglu, MD
2023 ASAP 35th Annual Conference
Переглядів 972 місяці тому
Title: The Controversy Speaker: Erol Veznedaroglu, MD www.ASAP..org
2023 ASAP Conference Dr. Plonsker "Variations in Presentation/Management of Pediatric vs Adult CM"
Переглядів 34710 місяців тому
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"
Переглядів 11810 місяців тому
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"
Переглядів 24110 місяців тому
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"
Переглядів 99210 місяців тому
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..."
Переглядів 21710 місяців тому
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
Переглядів 14510 місяців тому
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
Переглядів 14110 місяців тому
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
Переглядів 19310 місяців тому
2023 ASAP Conference Question & Answer Session
2023 Conference Question & Answer Session
Переглядів 19810 місяців тому
2023 Conference Question & Answer Session
2023 Conference Question & Answer Session
Переглядів 25910 місяців тому
2023 Conference Question & Answer Session
2023 Conference Dr. Kelly "The Decision - Making Process...with progressive scoliosis & CM"
Переглядів 20111 місяців тому
2023 Conference Dr. Kelly "The Decision - Making Process...with progressive scoliosis & CM"
2023 Conference Dr. Klinge "Occult Tethered Cord..."
Переглядів 1,6 тис.11 місяців тому
2023 Conference Dr. Klinge "Occult Tethered Cord..."
2023 Conference Dr. Crawford "Pain Profiles in CM and Management"
Переглядів 31611 місяців тому
2023 Conference Dr. Crawford "Pain Profiles in CM and Management"
2023 Conference Dr. Yang "Craniocervical Anatomy in Black & White"
Переглядів 20311 місяців тому
2023 Conference Dr. Yang "Craniocervical Anatomy in Black & White"
2023 Conference Dr. Patel "Historical Perspectives, ... Management in our Chiari Patients"
Переглядів 15911 місяців тому
2023 Conference Dr. Patel "Historical Perspectives, ... Management in our Chiari Patients"
2023 Conference Dr. Ravindra "Morphological/Ultrastructural Investigation....in Children with CM"
Переглядів 6611 місяців тому
2023 Conference Dr. Ravindra "Morphological/Ultrastructural Investigation....in Children with CM"
2023 Conference Dr. Maher "Participation in sports with CM"
Переглядів 15211 місяців тому
2023 Conference Dr. Maher "Participation in sports with CM"
2023 ASAP 35th Annual Conference Dr. Levy "Syrinxes Resultant from Trauma..."
Переглядів 32911 місяців тому
2023 ASAP 35th Annual Conference Dr. Levy "Syrinxes Resultant from Trauma..."
2023 ASAP Conference Dr. Heiss "Study of the Natural History of CM/SM"
Переглядів 30911 місяців тому
2023 ASAP Conference Dr. Heiss "Study of the Natural History of CM/SM"
2023 ASAP Conference Dr. Grant "Chiari Surgery"
Переглядів 1,1 тис.11 місяців тому
2023 ASAP Conference Dr. Grant "Chiari Surgery"
ASAP Chiari & Syringomyelia Conference
Переглядів 1,3 тис.Рік тому
ASAP Chiari & Syringomyelia Conference
Meet the renowned doctors.
Переглядів 218Рік тому
Meet the renowned doctors.
ASAP Conference
Переглядів 316Рік тому
ASAP Conference

КОМЕНТАРІ

  • @jonr6680
    @jonr6680 Місяць тому

    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!!

  • @ceptember.
    @ceptember. 2 місяці тому

    Bless you

  • @janycebrown4071
    @janycebrown4071 3 місяці тому

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

  • @brianmcreavie3810
    @brianmcreavie3810 5 місяців тому

    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

  • @theangrytiredzebra
    @theangrytiredzebra 6 місяців тому

    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.

  • @LisaMitchellGD
    @LisaMitchellGD 7 місяців тому

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

  • @loisslovin8185
    @loisslovin8185 9 місяців тому

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

  • @Janice_V
    @Janice_V 11 місяців тому

    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!

  • @renu653
    @renu653 Рік тому

    Thank you so much

  • @denisehaley9271
    @denisehaley9271 Рік тому

    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.

  • @kouserbegum7856
    @kouserbegum7856 Рік тому

    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

  • @shaunscott9671
    @shaunscott9671 Рік тому

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

  • @nojremlock6826
    @nojremlock6826 Рік тому

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

  • @Cicibloom47
    @Cicibloom47 2 роки тому

    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!!!!!!!! ❤️❤️❤️

  • @MishMacky
    @MishMacky 2 роки тому

    Excellent presentation. Thank you.

  • @howlatthemoonandstars2665
    @howlatthemoonandstars2665 2 роки тому

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

  • @johnbmadwis
    @johnbmadwis 2 роки тому

    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.

  • @koyaanisqatsi5163
    @koyaanisqatsi5163 2 роки тому

    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.

  • @melanievesters5473
    @melanievesters5473 2 роки тому

    Very informative. Thank you 😊

  • @AbhishekTibrewalnoida
    @AbhishekTibrewalnoida 2 роки тому

    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...

  • @pixiemermaid
    @pixiemermaid 2 роки тому

    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.

  • @crystalgoodchild3001
    @crystalgoodchild3001 2 роки тому

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

  • @wramsey2656
    @wramsey2656 2 роки тому

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

  • @pixiemermaid
    @pixiemermaid 2 роки тому

    This explains, me.

  • @claudbob1849
    @claudbob1849 2 роки тому

    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🤷‍♀️

    • @julierogers4473
      @julierogers4473 Рік тому

      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.

  • @Patriotintexas
    @Patriotintexas 2 роки тому

    Thank you.

  • @alisenielsen640
    @alisenielsen640 2 роки тому

    This woman is an amazing researcher

  • @TheBodybuilder4life
    @TheBodybuilder4life 2 роки тому

    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

  • @jeanwinders9556
    @jeanwinders9556 2 роки тому

    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.

  • @kirapyromantic4431
    @kirapyromantic4431 2 роки тому

    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

  • @MelodyGossandannie111
    @MelodyGossandannie111 2 роки тому

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

  • @shecat1964
    @shecat1964 2 роки тому

    What about sudden weight gain?

  • @travishanson166
    @travishanson166 2 роки тому

    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.

  • @deepakkumar-kr8xg
    @deepakkumar-kr8xg 2 роки тому

    Permanent ilaaj chutiyo tum log bhi nahi sari sakte

  • @tailzzzzz
    @tailzzzzz 2 роки тому

    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.

  • @TheAn0maly
    @TheAn0maly 3 роки тому

    This is a revolutionary presentation, truely amazing.

  • @Chiari_Queen_T
    @Chiari_Queen_T 3 роки тому

    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!

  • @sarahb.6475
    @sarahb.6475 3 роки тому

    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.

  • @DonnaC7071
    @DonnaC7071 3 роки тому

    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.

  • @scottmiller6950
    @scottmiller6950 3 роки тому

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

  • @kimg7421
    @kimg7421 3 роки тому

    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.

  • @IslandStyle123
    @IslandStyle123 3 роки тому

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

  • @davidwilson5207
    @davidwilson5207 3 роки тому

    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.

  • @trsavage9778
    @trsavage9778 3 роки тому

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

  • @JayInt
    @JayInt 3 роки тому

    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.

  • @totherescue3556
    @totherescue3556 4 роки тому

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

  • @victoriamartinez8183
    @victoriamartinez8183 4 роки тому

    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. 🥺

  • @sadyecheverria7066
    @sadyecheverria7066 4 роки тому

    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

  • @PEMF.Hydrogen.LLLT.Experts
    @PEMF.Hydrogen.LLLT.Experts 4 роки тому

    Interesting for sure!

  • @karenrayner839
    @karenrayner839 4 роки тому

    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.