XXIX Chiari Conference

XXIX Chiari Conference

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



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)


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




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)


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


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


Room 1 – Afternoon


  • 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


  • 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)


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

Room 1 – Afternoon


  • 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


  • 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


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


  • 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


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

Room 1 – Afternoon


  • 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


  • 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
  • Co-morbid Conditions Associated with EDS – Rodney Grahame (UK)


  • 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)
  • What are Dysautonomias? – David Goldstein (NIH)


Room 1 – Afternoon


  • 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


  • 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)


  • 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


  • 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


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


  • 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


  • 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)


  • 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


  • 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
  • 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


  • 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


  • 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


  • 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)



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).



Loosing Sight

Loosing Sight

Hi All.

Today’s post isn’t a very positive one. I had to go to the eye doctor six times since September. After three pairs of glasses, a failed pair of bifocals, and three eye exams later, I found out I am legally blind. It’s a condition called Cortical Blindness. The part of your brain that controls vision is the Visual Cortex.

Apparently, with all the brain swelling, pressure changes, and surgery, this part of my brain has been damaged beyond repair. My physical eyes themselves are healthy.  As you can imagine, this has been a very overwhelming situation to process. Not only does it affect my life, but the lives of my family, friends, and all of the Chiari community that I counsel on a daily basis.  I’m sure, dear reader, you can understand that I am finding it very hard to be the Positive Chiarian I am known for being.

I have been spending the past week wallowing in self pity, trying to figure out what this means going forward with advocating, writing the blog, and counseling. My eye doctor, Dr. Smith, has been so warm and kind through the whole process. She and her staff have taken an abundance of their time helping me to navigate what I am going through. If you live in Central Pennsylvania, I highly recommend them. Dr. Smith is also helping me to find the help I need to relearn how to do things without vision.

Going through everything that I have lately, my spirit has been in the toilet. I have the dearest friend, Sheryl, who is always available to listen to me rant, rave, cry and laugh. We found each other on the internet, and have never actually met in person!  This is what I emailed to her when I got my final diagnosis.

“Everyone keeps telling me what a strong, positive person I am, and they KNOW I will get through it. I just want to tell them to shut up. Not to be mean, but I just can’t deal right now. If it was one thing, it would be different. But my body is failing me, and now loosing my sight? These conditions have and continue to rob me of so much. I have no distraction now. I can’t really write my blog. My eyes hurt so much anymore I just have to sit with an ice pack or cold rag. I can’t sew, paint, draw, read, cook, drive, walk much, bath or dress myself, talk on the phone, text ect.”

I felt horrible saying these things to her. Sheryl has so many issues of her own and she always has a kind word for me. This was her response:

“…You whine, rant and rave all you want…do whatever it takes to get it off your chest.  And, I know, because this is chronic, you NEED to whine and rant and rave often.  I’m here to listen.  I wish there were some words of wisdom to share with you, but I guess the best thing is to just be here and listen, and let you share with me. I can understand that you no longer want to hear how strong you are, you already know that to get to this point in your life, of course, you have been strong and persevered.  It’s those of us who are ignorant of each and every aspect of your life, who say stupid things, thinking that we are being encouraging…”

Isn’t she amazing? She is so fully of sage advice and so very modest. I felt like a complete arse after reading her email. I truly don’t know what I would do without her!

I am looking into software that will allow me to use my computer without having to see what I am doing, but at this time, it’s a bit cost prohibitive. contrary to what some people think, I don’t get paid to blog. I also never charge any “patient” who comes to me for advice or help. Everything I do is done out of love, and wanting to help others. I know how I felt when I was diagnosed, and there was no information available to me. No one should ever feel alone trying to understand Chiari and everything that goes with it.

What I want to get across to you dear reader is this, no matter what our respective conditions do to us, no matter how hard they try to break us down, make us wish we were dead, or feel like we can’t keep going, know that you ARE STRONG. In the words of my dear Sheryl,

“You already know that to get to this point in your life…you have been strong and persevered.”


Stay positive dear readers!



Loving Someone Who Suffers From Chronic Pain

Loving Someone Who Suffers From Chronic Pain

Hello dear readers.

I have been away from both blogs for a little bit lately. My pain has been horrible, uncontrollable, and making me wish it was all just over. Its hard not to have those thoughts when you live with the pain I and others do. I’m still not feeling well enough to write, so my husband and care taker wrote a post for me from a caretaker and spouse’s point of view. Please welcome Jason Thompson.

When my beautiful wife was first diagnosed with Chiari in 2013, it changed our lives forever in ways we never could have imagined. It has created new obstacles, unforeseen challenges and persistent frustrations. However, despite all of those hurdles, it has also given me a deeper appreciation for what matters most in life, and an even deeper appreciation for the incredible woman I married almost nine years ago.

The transition hasn’t been easy for either of us. It’s not just a few minor changes; it’s a whole new way of life. Being married to someone who suffers from a chronic condition like Chiari and EDS means taking on new responsibilities, but it also means finding new and meaningful ways to support your partner. For too long, I thought that just meant getting up early and doing the dishes or folding the laundry (and yes, taking on a larger share of the household responsibilities is certainly part of the equation). What I’ve come to realize is that supporting a partner emotionally is far more important than chore you might complete around the house.

Loving someone who lives with chronic pain is a constant struggle because the pain can twist their mood and outlook in awful ways. But that same sweet person still stands in front of you, crying out for understanding, acceptance and love. Pain takes away so much; loving someone who is in constant pain means finding new ways to give our loved ones a life worth living.

If someone you love has been diagnosed with Chiari, EDS or another condition that causes chronic and debilitating pain, here are several pieces of advice I’ve found to be invaluable.

Support, Don’t Demand

One of the areas where my wife and I have struggled most stemmed from my habit of dictating what she should and shouldn’t do based on her pain. It’s OK to have a conversation from time to time to voice your concerns if you suspect your loved one may be doing something that is counterproductive or even a little bit dangerous. However, this doesn’t mean you should treat them like a child. Allow them listen to their bodies and do what they are capable of doing. Be willing to discuss their capabilities and limitations, and offer suggestions of ways you can support them rather than making them feel like an invalid. Having an honest discussion about these sorts of things is paramount. But lecturing your loved one and treating them like a toddler will only breed resentment.


This one seems like it should be obvious, but I can’t tell you how many times I’ve caught myself trying to “fix” my wife’s problems as quickly as possible when she says she’s hurting. Sometimes, my first inclination isn’t to listen; my priority is always to do whatever I can to make her feel better ASAP. In many ways, I think that’s a natural male instinct to adopt the role of a protector, and many parents doubtlessly feel the same instinct with their children. But oftentimes, your partner or loved one doesn’t need protection or a solution. They just need someone to listen and understand what they are going through, and to be able to connect with another human being. Pain is isolating, so when someone in pain reaches out to you, the best thing you can do is reach back. Not with a bottle of pills or a list of activities they should or shouldn’t do, but with an open hand and a sympathetic ear.

Be Patient

As I alluded to earlier, pain can often bring out the worst in people. But it is important to realize that the anger and depression associated with chronic pain won’t last forever. Someone in the throes of pain might withdraw or lash out when they are feeling their worst. Understand that if you respond to that negativity with more negativity, you only have yourself to blame. Instead of responding to a terse or angry comment with frustration or angry, focus on the reasons why they might be reacting in a negative way. If you know they are in pain, suggest ways to help. If that fails, give them reassurance that you care about them, and be willing to give them some space if necessary.

Most of us don’t fully comprehend what it’s like to go to sleep at night wondering if we’ll wake up tomorrow in too much pain to even get out of bed. I’ve heard too many stories of people who have Chiari whose partners jumped ship because they couldn’t handle the situation. I often wonder how many good relationships have gone down the tubes due to an unwillingness or inability to adapt to a partner’s disability, and more importantly, how many goodhearted people have been cast aside due to simple misunderstanding or just plain selfishness. In the end, leaving behind a good wife, husband or loved one due solely to their medical issues will never enrich your quality of life.

Patients who have chronic conditions don’t have a choice. They have to live with pain and physical limitations every day. But everyone around them has the ability to make a choice. We can decide whether to reach out a helping hand, offer a shoulder to cry on, or even just provide a sympathetic ear. Believe me when I say that every time we’re willing to make that kind of choice and give a little piece of ourselves, that love is appreciated more than we could ever possibly fathom and returned tenfold. And perhaps just as important, it shows us the love we have within ourselves.

When we are in pain, we don’t always take into account how those around us are feeling, nor can they truly understand what we are going through. I hope this post will be able to help some of you talk to your loved ones, and help them understand what we are going through.


Stay positive my dears!



Fact sheets for Docs-on-the-go

Fact sheets for Docs-on-the-go

Hi all

This is a fact sheet endorsed by my surgeon, Dr. Paolo Bolognese. It is a great help if you want to print off and take to your next doctors appointment!

Fact sheets for Docs-on-the-go:

Chiari-1 Malformation©2005 SJ Rodgers, Educational Therapist, and Danny Whitehead, M.D.
Endorsed by Paolo Bolognese, M.D. Director of Chiari Neurosurgical Center at Neurological Surgery, P.C.

You know how to recognize multiple sclerosis (MS) – you probably have several cases in your busy practice.You also expect to add one or two new cases every year, because you know that 400,000 Americans have MS, and that another 200 are diagnosed every week:

1. MS is rare, but not uncommon, so it doesn’t surprise you.

2. Did you know that similar numbers apply to Chiari-1 Malformation? How many Chiarians have you identified in your practice? Most cases of Chiari are left undiagnosed, or worse, misdiagnosed as multiple sclerosis, migraine, fibromyalgia, or psychiatric disturbances, a common error that prevents physically ill Chiari patients from getting the kind of help they need and deserve.

Let’s take a closer look.

Chiari-1 Malformation is properly defined as a mesodermal anomaly, a deformity of the posterior cranial fossa boundaries, most notably the occipital bone, but also the tentorium, clivus, basion and opisthion.The deformity subtly compresses the cerebellum and often the occipital lobe, brainstem, and/or spinal cord, too. The cerebellar tonsils herniate into the foramen magnum and may occupy a small portion of the upper cervical spinal canal .

They are visible on mid-sagittal and slighty parasagittal MRIs . However, in some cases, the tonsils wrap around the brainstem or curl up like tiny snails; then their appearance is more subtle, but their effect is just as debilitating .The reason for symptom and sign manifestation – and an important key to the severity of a case – is the deformity’s effect on cerebrospinal fluid (CSF) dynamics.

When CSF flow is turbulent, reduced, or absent in one or more locations, adjacent brain tissue receives little nutritional support, cellular by product removal, or cushioning from the effects of mechanical or Valsalva maneuvers. Brain function in the affected areas is disturbed. Naturally, patients report debilitating effects that correspond to the malfunction of the affected brain parts.

Symptoms and signs can number into the dozens, can appear to exist in unrelated systems, and can wax and wane as influential factors change.

How can you identify your Chiarians? (Yes, you do have some.) The easiest way to identify Chiarians is by cataloging their complaints in categories corresponding to brain anatomy:

1. Listen for details indicating cerebellar, occipital lobe and brain stem malfunction, then add upper spinal cord symptoms, and the malfunction of midline structures such as the hypothalamus, amygdala, and pituitary gland.

You’ll see a pattern that is unique to the patient’s anatomy; it matches the territory of the malformation and reflects defects in the patterns of cerebrospinal fluid flow. Order MRI scans to verify your clinical observations.

MRI of the brain will show subtle structural defects in addition to any obvious tonsillar herniation. An MRI of the entire spine will rule out or confirm a syrinx; this fluid-filled cavity often accompanies Chiari and can be found anywhere in the spinal cord. A Cine MRI of the cranio-cervical junction will outline CSF flow dynamics. Watch for diminished or absent flow, especially in the retro cerebellar spaces, and from the fourth ventricle between the brainstem and cerebellum. Hydrocephalus is not necessary for the diagnosis of Chiari.
Keep in mind that subtle deformities within the posterior fossa, with or without frank herniation, can be more problematic in their effect on brain function than a large but simple ectopia that happens to leave room for normal fluid flow. This explains why short, thick cerebellar tonsils that barely plug the foramen magnum can cause a serious impediment, while a longer herniation that is thin or peg-shaped sometimes can cause few problems.

Ok, so you realize you have a few Chiarians. Now what? Take good care of them. Typically they have been suffering for a long time, with no name for their assailant. Explain Chiari to your patients, and reassure them that they are not psychologically ill, that their compressed brain tissue and altered fluid dynamics do have measurable effects on their physical function. Encourage them to learn more .

Work as a team to decide which of several courses you’ll follow:

In cases with mild symptoms, encourage your patients to keep you informed of any changes, follow good health habits, and avoid physical activities that promote whiplash, such as trampolines, roller coasters, and contact sports.

In cases with moderate symptoms, also consider trying a biochemical treatment such as Diamoxto reduce fluid production if indicated, or suggest a mechanical treatment such as cervical traction to increase space in the cranio-cervical junction.

In cases with moderate to severe symptoms, do all of the above and encourage your patients to consult with a neurosurgeon who is very experienced with Chiari cases. Surgery for this debilitating malformation is a delicate art form; it requires a resculpting of the retrocerebellar spaces to create the missing cisterna magna and to redirect cerebrospinal fluid and establish proper flow dynamics in multiple planes.

Two more points to consider:
1: Instruct your patients to report immediately any of the red-flag warning signs of severe brainstem compression: breathing difficulties, swallowing/choking problems, wild heart rate fluctuations, and/or drop attacks.  When they call you, take action. Brainstem compression from Chiari can develop at a variable pace, and it has been known to KILL.

2: Familiarize yourself with the subtleties of this rare-but-common disease.

Check out the following internet resources for accurate, up-to-date information:

Chiari Institute

conquer chiari



National MS Society

“Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. “Until recent years, CM1 was regarded as a rare condition. With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition. Genetic studies spearheaded by Dr. Milhorat support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected three times more often than men. Approximately 3,500 Chiari operations are performed each year in the United States. ”

http://www/. conquerchiari. org/FAQ. htm

“Estimates for the number of people with true Chiari range as high as 500,000 in the United States .A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population. ”

Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery.1999May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.

ML, Nimjee SM, Floyd J, Bulsara KR, George TM Neurosurgery.2005 Apr; 56(4):716-21 “Correlation of cerebrospinal fluid flow dynamics and headache in Chiari I malformation.“Regardless of the degree of tonsillarectopia, occipital headaches were strongly associated with hindbrain CSF flow abnormalities.”

Quigley MF, Iskandar B, Quigley ME, Nicosia M, Haughton V. Radiology. 2004 Jul;232(1):229-36.Epub2004 May 20. “Cerebrospinal fluid flow in foramen magnum: temporal and spatial patterns at MR imaging in volunteers and in patients with Chiari I malformation.“CSF flow in symptomatic patients with Chiari I malformation , unlike that in volunteer subjects, is characterized by flow jets, regions with a preponderance of flow in one direction,and synchronous bidirectional flow.”

Chiari Institute “The majority of patients complain of severe headache and neck pain .Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet .Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed. ”

ASAP “Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, and muscle weakness or balance problems. Often fine motor skills and hand coordination will be affected. Vision problems can also occur. Some patients experience blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights. Physical examination may reveal nystagmus (involuntary eye movements).Other symptoms include tinnitus (buzzing or ringing in the ear),hearing loss or vocal cord paralysis .Patients may have difficulty swallowing, frequent gagging and choking and, in some cases, sleep apnea may be present .”

ASAP “The most frequent symptom groupings include: headache,pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of voice, frequent respiratory tract infections, coughing when swallowing foods and fluids, compression of the spinal cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g., arms are effected but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle). Combinations of these syndromes occur commonly.”

Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery.1999May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.