Hello My Chronic Illness lovelies!

Can you believe we are almost through June? I have been super busy lately, but wanted to take a moment to remind you about the up coming ASAP Conference which I will be detailing below. I will be paying for a streaming ticket instead of trying to get to NY this year, and I will be taking notes and blogging about the information. There will be some amazing speakers and an abundance of information this year, as there is every year. I will be focusing on Chiari, as there are simultaneous talks this year. If there is something you would like me to talk about, or a topic of interest to you, please let me know, and I will try to make sure I cover it. I will be linking to my lifewithchiari pay-pal for donations toward the conference ticket, and the purchase of the whole series after, that way I can make as much available as possible to you all! 

This years conference is being organized by Drs. Kula and Bologense. Many of you will be familiar with Dr. Bologenese. He is my neurosurgeon, and the reason I am here today to write this blog.  I cannot stress enough the importance of this conference!  As an advocate and and educator on Chiari, this is an amazing opportunity to gain insight an perspective from several talented and knowledgeable individuals. There is so little known about Chiari and its co-morbidity’s that any chance to educate the public, our families, and the medical community can not be taken for granted.  Even if you can’t attend, please share this with as many people as possible. The more people we can get to understand what we go though on a daily basis, the better our lives and the lives of our fellow chronic illness brothers and sisters will be. 

Here is the information I have been sent. If you have any questions, you know how to reach me!

Love and spoons

Christina

 

FEES:  Admission fee: $ 175.

Webcast is available for the same admission fee (you and your family can watch it at home, from your computer, for the price of ONLY ONE admission). You just need a good internet connection. The Webcast will be in HD, over 2 channels. The conference is geared towards educating patients, their families, neurosurgeons, residents, and health care practitioners. With 70+ speakers from four different continents, this event will represent the highest concentration of experts on these topics ever assembled

(see Scientific Program at the bottom of this email)

ONLINE REGISTRATION AND HOTEL RESERVATION:

Go to asap
Select “Register for ASAP’s Chiari & Syringomyelia Conference now” On the same webpage select “Click Here” to make hotel reservations online or call the hotel 516-794-3800 and provide them with corporate code “CISCISA” to secure special rate of $135/night

 

XXIX ASAP CONFERENCE

SCIENTIFIC PROGRAM

Wednesday, July 19

5:30 pm – Registration and buffet

 

Thursday, July 20

Room 1 – Morning

PANEL: CHIARI SURGERY (Chair: Ulrich Batzdorf)

  • Non-Dural Opening, Current State of the State – Neil Feldstein (Columbia)
  • Dural Opening: Real or Perceived Risk? – Mark Souweidane (Cornell)

PANEL: COMPLEX CHIARI

  • Indications for Fusion in Pediatric Chiari I Malformation – Richard Anderson (Columbia)
  • Craniocervical Fusion in Adult: Complex Chiari and Condylar Screws – Paolo Bolognese (CNSC)

LECTIO MAGISTRALIS – KEYNOTE SPEECH

  • Primary Spinal Syringomyelia (including post-traumatic, post-inflammatory, arachnoid cysts) – Ulrich Batzdorf (UCLA)

 

Room 1 – Afternoon

PANEL: UNDERSTANDING SYRINGOMYELIA

  • Syringomyelia Not Associated with Chiari I Malformation or Arachnoiditis – John Heiss (NIH)
  • SM and CMI: Classification and Clinical Diagnosis – Palma Ciaramitaro (Consorzio Chiari Torino)
  • How Should Syringomyelia Be Defined And Diagnosed – Jörg Klekamp (Germany)
  • Questions on the Pathogenesis Of Syringomyelia – Andrew Brodbelt (UK)

Friday, July 21

Room 1 – Morning

PANEL: REDEFINING CHIARI

  • Toward a Consensus on the Definition of Chiari I Malformation. – Harold Rekate (Chiari Institute)
  • Pathogenesis and Clarification of Chiari Malformations: Morphometric Analyses of the Posterior Cranial Fossa And Craniovertebral Junction – Combined with Surgical
  • Management of Chiari Malformations Based on the Pathogenesis and Mechanisms of Tonsillar Decent – Misao Nishikawa (Osaka, Japan)
  • Genetic Hypotheses of Chiari Malformations Type I – Allison Ashley-Koch (Duke University)
  • Differential Diagnoses of Headache in the Patient with Chiari I Malformation –  Fraser Henderson (Maryland)

LECTIO MAGISTRALIS – KEYNOTE SPEECH

  • Syringobulbia in Chiari I Abnormalities – Arnold Menezes (University of Iowa)

Room 1 – Afternoon

PANEL: CHIARI SURGERY

  • Primum Non Nocere, First Do No Harm-Long-Term Follow-Up of Surgical Treatment of Pediatric Chiari I Malformation – Jeffrey Wisoff (NYU)
  • Rapid Fire Panel about Chiari Surgery – Selected Panel

PANEL: UNDERSTANDING SYRINGOMYELIA

  • Shunting to the Subarachnoid Space for Treatment of Syringomyelia – Marcus Stoodley (Sidney, Australia)
  • Pathogenesis and surgical treatment of syringomyelia associated adhesive arachnoiditis – IIzumi Koyanagi (Hokkaido, Japan)
  • Transverse myelitis in children with Chiari I malformation – Vadivelu Sudhakar (Cincinnati Children)
  • Failed foraminal decompression, surgical complications avoidance in syringomyelia – Fabrice Parker (Paris)

Saturday, July 22

Room 1 – Morning

LECTIO MAGISTRALIS – KEYNOTE SPEECH

  • Tethered Cord Syndrome – Scientific Analysis for Diagnosis and Treatment –  Shokei Yamada (Loma Linda)

PANEL: TETHERED CORD SYNDROME – BELIEVERS & SKEPTICS

  • Making the Diagnosis: Selection Criteria for Tethered Cord Syndrome – Monica Wehby (Portland, OR)
  • TCS Panel – Cormac Maher (University of Michigan)
  • The Clinical Triad of Tethered Cord –  Petra Klinge  (Brown University)
  • TCS Panel – Russell Lonser (OUMC) – *probable, not yet definite

LECTIO MAGISTRALIS – KEYNOTE SPEECH

  • Confessions of a Neurosurgeon: What 25 Years of Chiari & Syringomyelia Surgery Have Taught Me – Graham Flint (Birmingham, UK)

Room 1 – Afternoon

PANEL: REDEFINING CHIARI

  • History of the definition of the Chiari Malformation – Ghassan Bejjani  (Pittsburgh)
  • Chiari malformation and atlantoaxial instability: is there a cause-effect relationship? –  Atul Goel (India)
  • Chiari related syndromes – Timothy George (Austin, Texas)
  • Cervical Medullary Syndrome – Roger W Kula (CNSC)
  • Chiari malformation: does size matter? – Dan Heffez (Chiari Institute of Wisconsin)
  • Chiari malformation: Remember brain sagging! – Wouter Schievink  (Cedars Sinai)

Sunday, July 23

Room 1 – Morning

PANEL: CHIARI SURGERY

  • Pediatric CM1 and Surgery: why, when and how (learning by a review of more than 500 children, 160 operated on) – Laura Valentini (Istituto Besta, Milano)
  • Rapid Fire Panel about Chiari Surgery – Selected Panel
    LECTIO MAGISTRALIS – KEYNOTE SPEECH
  • Co-morbid Conditions Associated with EDS – Rodney Grahame (UK)

PANEL: EHLERS-DANLOS SYNDROME

  • Joint Hypermobility and Related Spectrum Disorders: Terminology and Classification – Marco Castori (Forlanini, Rome)
  • New classification of EDS and Diagnostic Criteria for Classical and Vascular – Clair Francomano (Harvey Institute of Human Genetics)
    LECTIO MAGISTRALIS – KEYNOTE SPEECH
  • What are Dysautonomias? – David Goldstein (NIH)

 

Room 1 – Afternoon

PANEL: ROLES AND GOALS OF INTERNATIONAL CHIARI SUPPORT GROUPS

  • Objectives and Communication Skills by the French Advocacy Group APAISER (French with English subtitles) – Mado Gilanton (APAISER France)
  • The Ann Conroy Trust: Development of a Patient Support Charity in the UK – Graham Flint, (ANN CONROY TRUST UK)
  • Topic TBA -Carlo Celada (AISMAC)
  • ASAP: From 1988 to the Future – Patrice Schaublin, ASAP President

Room 2 – Morning

PANEL: THE 101 LECTURES

  • Principles of Surgical Management of Chiari I Malformation – Ian Heger (Medical College of Georgia)
  • Syringomyelia: Basics about Pathophysiology, Diagnosis, and Principles of Surgical Management – Tina Loven (Mercy Clinic, Springfield, MO)

PANEL: OMNIBUS

  • Epigenetics and Regeneration of the CNS – Bermans Iskandar (University of Wisconsin)
  • Clinical Outcome Scales and Prediction Tools for Surgical Outcomes in Chiari Malformation – Nicholas Wetjen (Mayo Clinic)
  • Representing and Intervening. – Jorge Lazareff (UCLA)

Room 2 – Afternoon

PANEL: OMNIBUS

  • Incidental CMI – Robert Keating (Children’s National Washington)
  • Fluid Dynamics Ear & Brain, Cochlear Vestibular System and Tinnitus. A Clinical Protocol for Diagnosis and Treatment in Chiari Patients – Abe Shulman (SUNY Brooklyn)
  • Physical Therapy Evaluation and Treatment of the Neck and Upper Extremities for the Person with Ehlers-Danlos Syndrome – Kevin Muldowney (Rhode Island)
  • Pain Management and Botox in CMI – Robert Duarte (President of NY State Pain Society)
  • Medical Marijuana and Pain – Robert Duarte (President of NY State Pain Society)

Friday, July 21

Room 2 – Morning

PANEL: THE 101 LECTURES

  • “Basilar invagination”, and craniocervical instability – diagnosis and surgical treatment – Brian Dlouhy (University of Iowa)

PANEL: OMNIBUS

  • Further Experience with Trauma to the Head or Spine Causing Conversion to Symptomatic Chiari 1 Malformation or Syringomyelia. –  Charles Tator (Toronto, Canada)
  • Sleep apnea and CMI (running title) – Juan Sahuquillo (Barcelona, Spain)
  • Learning challenges in CMI – David Frim (University of Chicago)
  • Long Term Follow Up in Dogs With Chiari-Like Malformation having Foramen Magnum Decompression with Cranioplasty – Dominic Marino (Canine Chiari Institute)

Room 2 – Afternoon

PANEL: OMNIBUS

  • Orthostatic Intolerance in the Setting of Chiari malformation – Peter Rowe (Hopkins)
  • Peripheral Nerve Stimulation for the Treatment of Refractory Headache in the Chiari Population – Alon Mogilner (NYU)

PANEL: INTRAOPERATIVE NEUROPHYSIOLOGIC MONITORING

  • Neurophysiological Monitoring during surgery for Chiari Malformation and Syringomyelia: What for? – Francesco Sala (Verona)
  • Intraoperative monitoring of Craniocervical fusion with condylar screws placement -Marat Avshalumov (IOM at NSPC)

Saturday, July 22

Room 2 – Morning

PANEL: CHIARI SURGERY

  • Chiari Type 1 Anomalies in Pediatric Age. A Series Of 434 Cases – Mirko Scagnet (Istituto Meyer, Firenze)
  • Rapid Fire Panel about Chiari Surgery – Selected Panel
    PANEL: OMNIBUS
  • TMJ and CCI in Chiari, Hypermobile and EDS Patients, the Cervical Myofacial Pain Syndrome (CMPS)  – John Mitakides  (The TMJ Treatment Center)
  • Posterior Fossa Volume of Chiari Malformation: Is It Really Smaller? –  Yong Liu (Beijing, China)

Room 2 – Afternoon

PANEL: OMNIBUS

  • The Value of Chiari Research to Patients and Families: the Park-Reeves Study – Chevis Shannon (Vanderbilt)
  • Orthostatic Intolerance in the Setting of Chiari Malformation – Peter Rowe (Hopkins)
  • Occipital Nerve Stimulation in Patients with CM1: Experience with Pain Before and After the Decompression – Konstantin Slavin (University of Illinois)
  • Comparison of Pre and Post-Operative Foramen Magnum Measurements in Minimal Invasive Surgical Treatment of Chiari Malformation – Yongli Lou (Beijing)

Sunday, July 23

Room 2 – Morning

PANEL: OMNIBUS

  • Is it Mast Cell Activation Syndrome?  Diagnosis and Management of Mast Cell Disorders – Anne Maitland (Mount Sinai)
  • NIH Common Data Elements – Brandon Rocque (University of Alabama)
  • Engineering-based Methods for Static and Dynamic Assessment of Chiari Malformation – Bryn Martin (Iowa)
  • A Genetic Hypothesis for Chiari 1 Malformation – Sabrina Giglio (Meyer Firenze)

Room 2 – Afternoon

PANEL: OMNIBUS

  • Should Sports Participation be Restricted?- Cormac Maher (University of Michigan)
  • Intracranial Venous Stenting: Past, Present, and Future –  Kenneth Liu (UVA)
  • Chiari I and Pseudotumor: Neurosurgical perspective – Gerald Grant (Stanford University)
  • Non-Surgical Management of Chiari-related or Postoperative Symptoms – Andrew Ringer (Mayfield)

 

1.WHO IS YONG LIU? AND WHY ALL CHIARIANS SHOULD KNOW ABOUT HIM?

Dr. Yong Liu is a Chinese Neurosurgeon. With more than 1,500 Chiari decompressions under his belt, he has the largest personal surgical case series in the world. About 10 years ago, he founded the Department of Syringomyelia at the Hospital of the Police Armed Forces in Bejing, China. The Department was inspired by and modeled after the Chiari Institute and counted five Neurosurgeons and a Clinical Researcher. Two years ago, Dr. Liu left the Army and moved to a different hospital to start another CMI/SM focused Department: the Department of Syringomyelia, at Tsinghua University Yuquan Hospital, with a staff of five Neurosurgeons.

Dr. Liu is the inventor of the MIST technique (Minimally Invasive Subpial Tonsillectomy), has a sizeable case series of transoral C1-2 plate fixation, and has worked for more than 4 years on customized 3D-printed fusion hardware devices. Dr. Liu is one of the presenters at the XXIX ASAP Conference on Chiari I Malformation, Syringomyelia, and Related Disorders.

2. In the Baseball World Series, every year two US teams play against each other for the pennant.

Until the 70’s, the US automotive history had an unshakable belief that their cars were the best in the world. Until the mid 60’s, the results of the NASA space program were far behind the efforts of its USSR counterpart, led by Sergey Korolev. The average US citizen is a bit myopic, when it comes to world vision. The same applies to the field of Chiari.

Hans Chiari was a Pathologist in the Austro-Hungarian Empire. The first Chiari surgeon in history was Dutch: Cornelis Joachimus van Houweninge Graftdijk. His surgical effort preceded W. James Gardner (Cleveland Clinic) by more than 20 years. Dr. Garner was the first US surgeon to operate on CMI. Bernard Williams (UK) was the first surgeon who focused on CMI and SM. Thanks to his groundbreaking thinking, Great Britain was the Mecca for CMI and SM until the mid 90’s. Dr. Batzdorf, Dr. Milhorat, Dr. Benzel, Dr. Oakes, and Dr. Scott shifted the gravitational pull to the US after that, for almost two decades. The current map of CMI is a global one, like in many aspects of our current life. The biggest lab for Syringomyelia research is in Sidney and it is led by Dr. Marcus Stoodley.

  • The biggest Chiari Center in the world is in Beijing. It is called Department of Syringomyelia.  Its Chairman is Dr. Yong Liu, who is also the owner of the largest CMI surgical series in the world to date.
  • The largest clinical network for CMI/SM is European and it is called SYRENET.
  • SYRENET was born out of the efforts of many European CMI experts, including Dr. Ciaramitaro (Italy) and Dr. XXX (France).
  • Most of the measurements that you see used around had been introduced in the CMI world by Dr. Misao Nishikawa, the current Chairman of Neurosurgery in Osaka, Japan.
  • The most prolific high level scientific writer of the last year about CMI/SM is Dr. Juan Sahuquillo from Barcelona, Spain. All these experts will be presenting at the ASAP Conference in July.

3. Brain fog and Attention Deficit Disorder (ADD) are common features in the mind and the behavior of many Chiarians. Well, my fellow Chiarians, do not let these two bullies interfering with your ability to attend the XXIX ASAP Conference. If you need to book a hotel room, do it now and do not wait until the last minute. This is not going to be the same ol’ Conference and the attendance is already projected to be higher than in the past.

4. The XXIX ASAP Conference is continuing in its long tradition. It is and has been the longest running series Chiari Conference in the world. Many experts and trendsetters have participated to the Conference since its inception. Its formula and its structure have been constant through almost three decades. Tradition is good, so now we are going to change…?! The next posts will analyze this Conference’s new features.

5. The old Conferences had 2 and a half days of presentations in one single room, generally from 9 to 4PM. This year’s XXIX ASAP Conference will run for 4 days. More than 70 presentations will take place in two main Rooms, which will run simultaneously.

  • Room #1 will mostly run presentations grouped in panels, with each panel focused on a disease process, or a specific problem.
  • Room #2 will mostly have miscellaneous presentations.
  • Both rooms will have world class presenters. Both rooms will run simultaneously.
  • The Scientific Program will be available soon and will be posted online. Read it, analyze it, study it, and then make your choices. Like in your school days, sometime some of you will spend the morning in Room 1, and the afternoon in Room2, or viceversa Other times you will go back and forth between the two Rooms, more than a few times. On a given day, you will spend all day in one room.
  • Every possible topic will be covered. Just choose what you like and roam between the two Rooms according to your individual interests.
  • For example, if a CMI patients does not develop a Syrinx by age 21, he/she is home free about developing a Syrinx for the rest of his/her life.

In this specific case, why spending the afternoon of day so-and-so in Room #1 listening to the Syringomyelia panel, when Room #2 has plenty of other things which could be of interest for you? With two Rooms constantly running in parallel, the most presentations you will be able to attend in person by yourself will be only 50% of the total of the Conference. So how can you get the WHOLE Conference experience? You can bet your cerebellar tonsils that we have a solution for that.

6. The XXIX ASAP Conference will be Webcasted live. For the same price of admission, people can tune in from home, through their computers and follow the Conference. The presentations will be aired live as a live video stream. As you remember, the Presentations will take place in two Rooms, simultaneously. The live Webcast will take place over two channels, one channel for each Room. In order to fully enjoy the experience, you will need a high-speed Internet connection.

7. If you attend the Conference in person, you can be only in one room at the time. There are two Rooms running simultaneously. If you attend the Conference through Webcasting, you can only be watching one channel at the time (one channel per room). There are two channels running simultaneously. So, can you experience the WHOLE Conference? The answer is YES, LATER.

  • All the presentations will be recorded and posted online after the Conference. The access to these recordings will be free for whomever attended the Conference, in person or by webcasting. All the others will be able to access by paying a (reasonable) fee.

8. Many of the topics presented at this Conference will not be found online, nor were presented at older ASAP Conferences, or other groups meeting. Once the basic topics were covered, the speakers have been invited to avoid duplicate presentations, and to present original material. The sheer size of the meeting did the rest.

The following are just a very few examples to demonstrate the point.

  • Dr. Konstantin Slavin (University of Illinois) – Occipital Nerve Stimulation in patients with CM1: experience with pain before and after the decompression.
  • Dr. Richard Anderson (Columbia) – Indications for fusion in pediatric Chiari I malformation.
  • Dr. Abe Shulman (SUNY Brooklyn) – Fluid Dynamics Ear& Brain, Cochlear vestibular System and tinnitus. A Clinical Protocol for diagnosis and treatment in Chiari patients.
  • Kevin Muldowney (Rhode Island) – Physical Therapy evaluation and treatment of the neck and upper extremities for the person with Ehlers-Danlos Syndrome.
  • Kenneth Liu (University of Virginia) – Intracranial Venous Stenting: Past, Present, and Future.
  • Clair Francomano (Harvey Institute) – New classification of EDS and diagnostic criteria for classical and vascular.
  • Ann Maitland (Mt. Sinai) – Is it Mast Cell Activation Syndrome?  Diagnosis and Management of Mast Cell Disorders.
  • David Goldstein (NIH) – What are Dysautonomias?
  • John Mitakides – TMJ and CCI in Chiari, Hypermobile and EDS Patients, The Cervical Myofacial Pain Syndrome (CMPS).
  • Robert Duarte (Northwell and President of the New York State Pain Society) – Pain management, botox, and marijuana.
  • Cormac Maher (University of Michigan) – Should Sports Participation be Restricted?
  • Andrew Ringer (Mayfield Clinic) – Non-Surgical Management of Chiari-related or Postoperative Symptoms.
  • The XXIX ASAP Conference will have 75 presentations plus 15 videoposters.

9. The XXIX ASAP Conference will start with a bang.

Day 1, Room 1, first Panel: Extradural vs Intradural techniques in Chiari surgery.

The opening act of the Conference will be a point-counterpoint between two long time good friends airing their different viewpoints on this matter: Dr. Neil Feldstein (Columbia) and Dr. Mark Souweidane (Cornell).

  • The extradural technique for Chiari surgery was first used by Milhorat in the mid 90’s. He published it in 1999 and then abandoned it in favor of intradural variants.
  • Ten years later, Dr. Feldstein reintroduced the extradural CMI decompression, with a stress on complication control and a pediatric focus
  • Extradural decompressions have been then adopted by many Pediatric Neurosurgeons.
  • In 2008, Dr. Souweidane summarized his experience with intradural (arachnoid sparing) techniques in an article which reported a very low complication rate, in a case series of 40 pediatric patients.

This debate is very strong within the Pediatric Neurosurgical community, but some points need to be made:

  • Pediatric CMI cases are not the majority of the overall CMI cases, by far. In a recent poll designed up for this Conference, only 18% of the Neurosurgeons declared to favor the extradural technique in their practice, while the reminder were divided between intradural technique with tonsillar reduction and intradural technique without tonsillar reduction
    There is no standard of care about CMI surgery (there is no one RIGHT way to do it). For what CMI surgery is concerned, “there are many ways to skin a cat” and you are going to hear from many of these catskinners at the Conference.

10. EDS is an important co-morbidity in the Chiari field.

  • Many of you have been seen by local rheumatologist, told that everything was fine, to later find out by national experts that your suspicion of indeed having EDS was correct.
  • On Sunday 23rd, the XXIX ASAP Conference is going to have an all star lineup in the Panel dedicated to EDS. Dr. Francomano will talk about: New classification of EDS and diagnostic criteria for classical and vascular.
  • Prof. Grahame (UK) will talk about: Co-morbid conditions associated with EDS.
  • American patients do not know that Prof. Grahame is one of the fathers of modern EDS, as one of the leaders of the Villefranche classification of EDS.
  • Dr. Castori (Rome, Italy) will speak about: Joint hypermobility and related spectrum disorders: terminology and classification.
  • Dr. Castori is one of the world leaders in field of EDS.
  • Prof. Grahame, Dr. Francomano, and Dr. Castori have been important members in the steering committee leading to the reclassification of EDS, the results of which were recently published.
  • Dr. Henderson, Dr. Bolognese, and Dr. Ellenbogen were part of this project as well, as members of the subcommittee covering the Neurological manifestations of EDS.

On a different note, as soon as the last two stragglers are going to be providing us with the title of their presentations, we are going to publish the Scientific Program, hopefully at the beginning of next week.

11. CSF and Chiari Connection International were founded in 2007. Conquer Chiari and Column of Hope were founded in 2004. WACMA was founded in 1996. ASAP was founded in 1988.

  • Well, ASAP is a youngster compared to the ANN CONROY TRUST, which was founded in 1980, thanks to the joint efforts of Ann Conroy, a tough Syringomyelia patient, and her brilliant Neurosurgeon, Bernard Williams, the Surgeon who single-handedly ushered Chiari in the modern era.
  • The history of these two great people is full of energy, great ideas, and courage in the face of hardship and tragedy. It is because of these two great individuals, that Chiari and Syringomyelia are no longer hopeless diseases, relegated as side notes of medicine textbooks as rare and poorly understood disorders.
  • The ANN CONROY TRUST is the inspiration for all the Chiari groups which followed world wide.
  •  Ms. Lynn Burton and Prof. Graham Flint are now carrying the torch of this unique Institution.

It is our greatest honor to announce that Prof. Flint will be at the XXIX ASAP Conference. He will pull a triple duty:

  • he will present a speech titled “Confessions of a neurosurgeon: what 25 years of Chiari & syringomyelia surgery have taught me”
  • he will prepare a videoposter titled “The life and legacy of Bernard Williams”
  • he will present a speech on behalf of ANN CONROY TRUST about “The Ann Conroy Trust: development of a patient support charity in the UK”.

12. A Panel is a group of presentations from different speakers revolving around a common team.

The following is the list of the Panels for the XXIX ASAP Conference.

  • Redefining Chiari
  • Understanding Syringomyelia
  • 101 Lectures
  • Chiari Surgery
  • Complex Chiari
  • Tethered Cord Syndrome: Believers vs Skeptics
  • Ehlers-Danlos Syndrome
  • Roles and Goals of International Chiari Support Groups
  • Miscellaneous topics will be presented daily in Room 2, under the Panel title Omnibus

Every day is going two have a Keynote Speech from a Master.

13.The 101 lectures are basic introductory presentations for beginners.

These lectures have been the core of the ASAP Conferences since their inception, almost 30 years ago. In an era when the Internet was in its infancy, the education of the Chiari patients heavily relied on these lectures. Several years later, the 101 lectures are still there, to help the “newbies”, who have just found themselves knee deep in the meanders of these complex disorders.

14. Are the 101 lectures only for the newbies ?

By looking at nowadays Facebook pages, there are many people who are militantly vocal, but obliviously inaccurate. Would you buy sushi at a gas station ? Well, on the internet everything is so uniformly packaged that it becomes very difficult to know how legit things are. Unless a Seal of Approval reassures you of your choice.

The 101 lecturers of this Conference are:

  • Ian Heger (Medical College of Georgia) – Principles of surgical management of Chiari I malformation
  • Tina Loven (Indiana) – Syringomyelia: basics about pathophysiology, diagnosis, and principles of surgical management
  • Brian Dlouhy (University of Iowa) – “Basilar invagination”, and craniocervical instability – diagnosis and surgical treatment.
  •  Dr. Heger did his Residency under Dr. Milhorat, was one of the first Travelling Fellows under Dr. Michael Scott (Brigham), and did his Pediatric Neurosurgery Fellowship at CHOP with Dr. Leslie Sutton
  • Tina Loven did her Residency under Dr. Milhorat and Dr. Rekate, and completed a Fellowship with Dr. Grant at Stanford.
  • Dr. Dlouhy trained under Dr. Arnold Menezes, and currently works with Dr. Menezes.

These three Doctors have breathed and lived Chiari and related disorders for a large part of the professional life. If you are a newbie, or you want to check how accurate your basics really are, come to the XXIX ASAP Conference and you will find the 101 lecturers in Room 2 on Thursday and Friday.

Dr. Wouter Schievink has been the pioneer in the field of Intracranial Hypotension and is the current world leader in this field.

  • He has developed protocol and procedures to treat occult CSF leaks. Many of his patients have EDS, while many others have acquired tonsillar herniation. Acquired tonsillar herniation is a “false Chiari”.
  • In Chiari, the driving force of the herniation is a small posterior fossa. In patients with occult leaks, the tonsils are driven downwards by the equivalent of a cleaning vacuum sucking from way below in the spine. In addition to his knowledge and his innovations, his patients and his Colleagues are in love with his outgoing and cheering personality.
  • Dr. Schievink is going to be at the XXIX ASAP Conference. His presentation will be on Saturday afternoon in Room 1: “Chiari malformation: Remember brain sagging!”

15. Money is tight and you think you cannot afford the ASAP Conference?

That is why we have boosted WEBCASTING at the XXIX ASAP Conference. For the price of one admission, and without the added costs of hotel and meals, you and your whole family can access the Conference without moving from your home. The Webcasting will be in HD. The only things you are going to need are a computer, a good internet connection, the price for one admission ticket, and popcorn. (lots of popcorn).