Depression and self destruction…

Depression and self destruction…

Hello my dear readers!

 

I can’t believe how long its been since I updated the blog. Unfortunately, my life went to hell, and I fell into a deep hole of depression and self destruction. Its important to talk about what we go through, not only physically but mentally as well. Theses conditions take a toll on us that most people will ever understand. The frustration, loneliness, depression, chronic pain, and just overall unknowing of what is going to happen to us. I separated from my husband, stopped taking my medications, stopped eating, and went into other self destructive behaviors. If I am being honest, I was sitting around just waiting to die. After my miscarriage, and everything else that EDS and Chiari have taken from me, I didn’t want to live anymore. I pushed away everyone and everything in my life.

As I sit here and write this, I have been contemplating so much in my life. Monday, I am seeing Dr. B. again to review my newest MRI and discuss if I need another surgery. When I got my first surgery, I had made the decision then and there to never have surgery again. It may seem a rash decision to make, but I almost didn’t survive the first one, and I didn’t know if I could handle the physical and emotional toll it would take on me.

I don’t know where this appointment will take me, and I have no clue if I will follow though with surgery if I need it. Going into it, I know I take all of your love and well wishes with me. I will update you all after the appointment.

 

Thank you everyone. I have missed you all, and I look forward to regular writing and counseling again.

 

Love and spoons.

 

Christy.

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

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).

 

 

Surgiversery and other things…

Surgiversery and other things…

Hello Everyone!

May sure went by quickly! Its finally starting to warm up here in Pennsylvania, and thank goodness. The cold weather always takes its toll on me.

As many of you know, I had my surgery the day before my 30th birthday, May 29,2013. This year marks four years since surgery! Fortunately for me, my MRIs have come back clear every six months for the last four years. Chiari is progressive. I will always have to be monitored, but, starting next year I will be able to switch to yearly MRIs. I’m so excited! This may not seem like a big deal to some, but it means a lot to me.

I have had a love/hate relationship with my surgery since the day I found out I was having it. Yes it saved my life, but it also changed it forever. The pain, heartache and misery it has caused makes me wonder sometimes if it was worth it. Then I realize, I am here. I am still alive, still walking. I am grateful for every single day I have had since May 29, 2013 no matter how hard or painful, because it is one more day I shouldn’t have had.

Whatever life brings you, be grateful for it. Pain, joy, misery, ecstasy, heartbreak, love, relish it all. Live in the moment. Feel them all because you can.

 

I wish you many happy days dear readers. Whatever lies ahead of you, face it with courage and a good heart. Know that you matter, pain will pass, and you are never alone.

 

Much love

Christina

 

Struggling

Struggling

Hello my lovelies!

I share a lot of my life with my readers. Good, bad, ugly, I try to give myself and my journey through Chiari and Ehlers-Danlos with you. My heart and soul goes into all the work I do surrounding lifewithchiari.com, hopesoup.me, the foundation, counseling those of you that need it, advocating for patient rights  and educating the general public about what we go though on a daily basis.

In spite of all of this, I struggle everyday. It isn’t the pain, limitations, side effects, or complications of the conditions, but the immense loneliness and profound sadness of the situation these conditions have caused.  There are times I get tired of having to constantly explain myself, of having to make excuses of why I can’t do things, having friends and family abandon me because the don’t understand that I WILL NEVER GET BETTER. THERE IS NO CURE. IT WILL ONLY CONTINUE TO GET WORSE.

From talking to many of you, I know I am not the only one working through these types of feelings. Chiari and EDS suck, but they have managed to give me something very precious… all of you. A wonderful, beautiful community of people, that without these conditions I would have never gotten the chance to know. If no on has told you lately, YOU MATTER!

I am also working though some personal issues right now, and have not been able to write as much as I would like, but you can always reach out to me anytime through the blog, lifewithchiari@yahoo.com, instagram, facebook, and twitter.

Ehlers-Danlos Awareness Month

Ehlers-Danlos Awareness Month

Hello my lovelies!

Where does the time go! When you have a chronic illness or condition ( or two, or three…) there never seems to be enough time for the spoons you have available. Keeping up with the blog, counseling people, advocating, living, (LOL) it gets exhausting, but I have missed you all! Today’s post is focused on Ehlers-Danlos Awareness. May has been designated as Ehlers-Danlos Awareness month, so all month long, I am going to focus on EDS, and try to bring you some extra resources and information to hopefully help any one who is newly diagnosed, or who may just have questions. I am pretty new to having EDS myself, so we will learn together!

According to Ehlers-danlos.com EDS is defined as “A group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hyper-mobility (joints that stretch further than normal), skin hyper-extensibility (skin that can be stretched further than normal), and tissue fragility.” This does not mean you have to have these two specific issues to have EDS. That is a myth, and one that is sorely outdated.

There is a lot of great information on their site, I highly recommend reading through it when you have the time. That being said, like most under diagnosed or rare conditions, there can be multiple different types, with different symptoms manifesting in different ways across the population.  As you can imagine, this can lead to a great deal of frustration.  Often times, family and friends don’t understand what we are going through, doctors can’t tell us what is going on, our bodies are doing things to us we can’t understand, and all we want are some answers!

As of 2017, there are thirteen sub types of ED, each with their own clinical criteria. This alone can make getting the proper diagnosis a nightmare. These are the current sub types.

Click through the links to be taken to each sub type of EDS to learn more about it.  I have Classical, or in the UK, Hyper-Mobile EDS. I suffer from frequent, random dislocations, easy bruising, long healing times, easy scaring, velvety skin, and I look much younger than my actual age. My body hurts all the time. With Classical/Hyper-Moblie EDS, your surrounding muscles have to work harder to support your weak joints, which is exhausting. It can be very hard for someone to understand why you are so tired all the time, when you don’t really do anything!

Together, we can raise awareness and shine a light on this debilitating condition. Never forget my dear zebras, you are not alone!!

 

Much love!

 

Christy

Advocating and how you can help!

Advocating and how you can help!

Hello all!

A little disclaimer. I will be talking about some new medications I am trying. While they work for me, I am not a doctor. This should not in any way be considered medical advice. Please make sure to speak with your own doctor about any medications you may be taking or are interested in trying for your own treatment plan. 

What a whirl wind few weeks it has been around here! I started seeing a new pain management doctor, Dr. Upadhyay, with Keystone Pain and Rehabilitation here in Pennsylvania.   ( I will be adding him to our doctors list!) He was AMAZING! When you live with several conditions that are relatively unknown it can be extraordinarily hard to find a doctor that will listen and help you.  He started me on Doxepin and Zonisamide, and the changes have been incredible. I have been able to severely cut down on my narcotic usage, and haven’t had to use my wheel chair in weeks. While I always like to share what does and doesn’t work for me, I am not a doctor, and therefore can not give medical advise! 

If you have known me for more than 10 minutes, you know that I am a hard core advocate for invisible illnesses. I mainly focus on Chiari and Ehlers- Danlos, not they are not the only ones I work with. 🙂 There are a wealth of organizations out there that are working tirelessly on our behalf to make sure our voices are being heard! I will be listing their links at the end of this post. Now the fun part! What can you do to help advocate for your specific cause? Some are easier than others, but here are some basic tips.

Education

  • Start with what you know. If you live with a condition day in and day out, you are more intimately aware of how it affects a person’s daily life than most others.
  • How does it affect you?
  • What are some things you want people to know about your specific condition?
  • What is being done right now to help?

Information

  • Have information at hand to back up what you are saying. I carry business cards and “pass it on” cards from Chiari Gear. It’s a good idea to be able to have something at hand until you get used to speaking to strangers about something so personal! Even if its just hand written note cards.
  • Be prepared for questions. People are curious by nature. If you start talking about your condition, people are going to want to know more about it. Don’t be discouraged if they don’t listen, don’t take you seriously, or are just flat out rude. Remember step one! Education! You can’t teach people who don’t want to learn. Best to just move on I say!
  • Social media can be your best friend. Post E-cards, notes, photos, statistics, ect. Anything to get people talking. Follow other people with your same condition. Work as a team!

Hard Work

  • This one is usually the toughest for most. Not because they don’t want to put in the effort, but because it can be physically, emotionally and spiritually draining talking about this one aspect of your life day in and day out as well as living it! Remember what your doing it for!!
  • I talk to anyone and every one who will listen to me. I wear Chiari and EDS gear, have purple hair, talk about my scar, tell people why I have to use that handicap placard, explain why I have to use the motor buggy at the grocery when they stare at me because they think I am being lazy.
  • Along with my husbands help, we managed to get several bills passed though the PA Senate to recognize September as Chiari Awareness month.
  • I sold bracelets and gave cards out to strangers to help spread the story and raise money for awareness education
  • I council others with Chiari and EDS to help them better understand what they are going through.
  • Biggest of all, I started the blog!

It may seem overwhelming at first. I have been an advocate going on four years now, and I still get overwhelmed. You brain didn’t fall out in a day, so take your time! ( Chiari joke lol) Please take the time to check out these other wonderful organizations! Please tell them lifewithchiari.com sent you 🙂 If you have any questions, or your struggling to get started, you can reach out to me through here on the blog, or via the following:

lifewithchiari@yahoo.com

on instagram

on facebook

Chiari & Syringomyelia Foundation

Ehrick Garion’s Act

The Chiari Project

Conquer Chiari

Chiari Gear

The Ehlers-Danlos Society