I was initially dx'd with Chiari 1, and decompressed as such. However, I actually had an Acquired Chiari 1.5, secondary to Intracranial Hypertension. Because I was decompressed and the pressure was allowed to remain from above, I developed a dural leak (pseudomeningocele) and a significant brain slump. Two years later, the unaddressed psuedomeningocele escalated, and I had a Subgalealperitoneal (SP) shunt put in to deescalate it. After years of revisions, an even larger brain slump, the development of an 11mm syrinx in my medulla oblongata (syringobulbia) draining down my cervical spine (syringomyelia), I will eventually be needing my shunt replaced with a Ventriculoatrial (VA) shunt and all the revisions that will come with that, especially as an Ehlers-Danlos patient. I also have a tethered cord that has yet to be addressed, but I'm surviving and still trying my best to thrive.
What I LOVE about the Chiari & Syringomyelia Foundation (CSF) is all the amazing videos that they put out. They support research, but they keep awareness as a key factor. There really is so much known about Chiari and its comorbid conditions, the doctors now need to know. The videos that they release year round, enable us to share what the doctors know, and help us make others aware of all we "really" go through. They trust us to support their efforts through walks, which serve an additional purpose of getting us out of the house and actually having face-to-face encounters with other Chiarians. I will forever be grateful to CSF (and Cathy) for all the hard work they put into building a sense of community, in our community. I encourage everyone reading this, whether they have Chiari or love someone who does, get to a Unite@Night walk in your area. If there are none, start one. You'll never regret it, nor will those that join you, as they have that opportunity of community and hope offered through Unite@Night walks!
I have organized a unite@night walk for the past 4 years. I've attended the past two unite@thehill events. I have attended countless educational events and I am so very happy to be associated with them. CSF made a difference in my life!!!
CSF has made a HUGE difference in my life!! I had been diagnosed with Chiari just 2 months prior to the very first educational event in Washington DC. When I learned of the event I registered to attend. That night I met people who remain a part of my life, including the neurosurgeon who performed my decompression surgery. The group and the people who attend CSF events, are my lifelines during hard times. The research is above and beyond and I'm thankful for the advancements I've seen. Thank you CSF for ALL you do!!!!
My daughter has chiari. When we first found out this is one of the foundations that I was told to look into. I’m so glad I did.
The CSF organization has been a saving grace for me. As a person with chiari, they have provided support in the areas of education by sponsoring lectures, meet n greet medical professionals, informative info on social media, a supportive community, sponsored local events & even helped with finding the right specialists & doctors. The CSF staff is friendly & have a big heart for helping those struggling for answers. Thank you.
I was a young mother of 3 boys far away from family. My husband and I were walking to our sons first football game when I went down, my legs had NOTHING and stayed that way for 3 days. Went through decompression, twice. I was so alone as nobody had ever heard of it.
I found csf, they have made such a difference. Working together to bring awareness to this monster. Thank you for taking the time to read my story.
In 2009 my son was diagnosed with Chiari. CSF was one of my go to sites to get information. We host a walk every year for them. I highly recommend working with this group. They are quick to respond to questions.
Having a child with what seems like a very rare malformation is terrifying! Being misdiagnosed for over a decade because doctors, family and the general population have no idea what to look for, or how to test for it, or even what the symptoms are....is infuriating. But how will people know? How will doctors learn and our knowledge and understanding grow if not for organisations like this one getting the word out! The Chiari and Syringomyelia Foundation have featured so many of the 'experts' in this field, and there aren't many. What they are doing for this disease is fantastic, This information needs to be out there, and it needs to be available to the general public. Patients and mothers and caregivers need to be armed with useful and reliable medical knowledge so that they can help doctors diagnose and treat a disorder that is much, much more common than we understand. This is a problem that can be solved, maybe not prevented? But either way, this knowledge is power and it's so very important to me and hundreds of thousands of others.
As a patient who has Chiari I have been ignored, lied to, and ignored by this organization. The organization doesn't see any issue with spreading incorrect info regarding Chiari.
I was born with a tethered spinal cord and developed syringomyelia from it not being properly diagnosed. Two of my children have Chiari Malformation and we all have hypermobile Ehlers Danlos Syndrome. It took four and a half years for me to get the right diagnosis. After which I felt empowered to finally start treating my illnesses. That was quickly followed by hopelessness and despair as all of my doctors told me they knew nothing about any of it. The CSF has an amazing board of advisors, physicians recognized around the world, listed on their site. I first contacted Dr. Fraser Henderson, who reassured me, I was not an anomaly to him. He has since done three surgeries on my neck. Dr. Petra Klinge, also on the board, has performed Spinal cord surgery on me and is going to now start seeing my children. Without the CSF, the information and resources they provide, I don't know where I'd be. Those doctors saved my life. As I learned more about my illnesses, my desire to raise awareness has become a calling. Now, with the help of the CSF, I hope to bring awareness and education to the doctors in the Hampton Roads area of Virginia. This is only the second year our area has held a unite@night walk, and those of us chairing the walk feel the CSF provides such a tremendous service to people with Chiari and Syringomyelia, that we want to give back to the organization year after year so they can continue to serve their mission.
Four years ago, when my grandson was diagnosed with Chiari Malformation, my first call was to Dorothy Poppe. I cried and told her about my grandson's diagnosis. Dorothy was extremely compassionate and helpful on that day and in the months that followed. She has always answered every question and continues to do so to this day. Her first hand knowledge of chiari both as a mother and a professional has been an important resource to me and my family. We continue to support CSF and all it's programs.
I am so grateful this organization exist. I was diagnosis with Chari and Syringomyelia and had no knowledge of what this was or what I should do. I did a Google search and found this organization, CSF. Just so happen CSF was sponsoring a seminar in my area that same day. I rushed to register and make it to that session. I was welcomed with open arms and received a welt of information. I even met what I have learned is the best doctor in the world for my condition. Now, I am confident I received the best treatment possible. CSF is still working hard to get this knowledge to others and help those in need. CSF is doing a great service and I am so thankful.
Chiari & Syringomyelia and I have been working together for a number of years, sharing a goal of promoting awareness and educating the public and medical community about Chiari and syringomyelia. I am one of many people whose lives have been profoundly affected by Chiari.
I was forced to retire early and go on disability, a bitter pill to swallow. Every aspect of my life was affected by pain and mobility problems. Previously I was active as a volunteer in my community and profession. I reduced my many activities to two, my church and Chiari advocacy.
CSF gives me the ability to still use my leadership skills, while providing programs and support that reduces my fatigue and gives me emotional support when things get overwhelming. Their staff members are also physically there for us when needed. I remember being in Washington D.C. and becoming disorientated to the point I could not do my presentation when we reached the legislators office, the CSF representative stepped in, found a comfortable position for me, asked for cold water for me and explained that she would speak while I recovered. None of the legislative aides that we spoke to that day had ever heard of Chiari or syringomyelia. That is too often the case, which is why CSF and I are fully committed to spreading awareness. Unfortunately many n the medical community were not well educated in Chiari and syringomyelia, resulting in misdiagnosis and delayed treatment for many people including myself. My symptoms of excruciating pain, balance problems, trouble focusing, bladder and swallowing problems started in 1995. I have been misdiagnosed five times.
CSF helps people to easily understand the conditions. Support groups, national fund raising walks, regional conferences, online videos and so much more are provided. One of the advantages of CSF is the ease of using provided programs and materials.
I hope to be working with CSF long into my future and encouraging others to join forces with us.
CSF has provided high quality, relative and timely educational programs. The programs are made live on social media to reach members everywhere. The CSF Unite @ Nite Walks have raised awareness about CHiari, a relatively rare neurological disorder and all the associated disorders, across the USA. CSF provides a great guide so that members who are suffering symptoms of CHiari and want to chair a walk or event can do so with the least stress possible. Walk supplies are mailed to chairs and advice is always available online or by phone. CSF strives to work with other organizations doing joint programs. Research is ongoing.
The CSF organization was there for my family & me when I was first diagnosed & suffering from Chiari symptoms following a car accident. The team there helped us with resources, they introduced us to great medical doctors & we were educated through their sponsored lectures throughout the country. I am forever grateful for all their hard work, support & love for the hurting. We may look good on the outside, but we are hurting on the inside. Thank you & God bless.
CSF is such a professional organization! They provide outstanding information about these terrible disorders (Chiari Malformation and Syringomyelia) and they are leaders in funding the research needed to find a cure!
I'm not personally affected by these disorders but I've volunteered with CSF for many years now. I've met some of the most amazing people in the process. Even the kids and families who are really struggling always seem to have this amazing drive to get through it all. To be able to see them swell with happiness when they make a valuable personal connection at a lecture, unite@night walk, or any other event always makes me tear up a little. Seeing the look on someone's face or hearing the tone in someone's voice that says "you understand what I'm going through and I appreciate that" makes it all worth it. I'm grateful that CSF and the other dedicated volunteers who tirelessly work to make it all happen can make a difference for so many people.
315 National Lectures
1.6 million people view the educational videos!
over 3 million people afflicted in the US alone!
Education, Research, Advocacy! CSF #1
I was hesitant signing up for my first unite@night walk with the Chiari & Syringomyelia Foundation, but it didn't take long for that hesitation to disappear. As the mother of three young children, one of which has a diagnosis of Chiari malformation and syringomyelia, and working full time plus I was concerned that I would be unable to have a successful fundraiser. It took one email from Cathy at CSF for that concern to transform in to confidence! Cathy and the team at CSF were amazing!! They took care of all the technical things that concerned me, getting the place and date and time all approved and permit applications and fees taken care of, even sending extra emails to follow up when we hadn't heard anything and then letting me know everything was all set to go. Not to mention the text messages, Facebook messages, phone calls, voice mails making sure that I felt confident and comfortable with everything for the day of my event!! I wouldn't even consider doing an event with another organization for fear that I would not have such a fantastic experience. The team at CSF is top notch!!
How blessed I felt when I found Chiari & Syringomyelia Foundation ! I knew right off that I wanted to be a part of this organization. I was diagnosed with Chiari in 1999 and was told that it would never affect me and then was diagnosed with Syringomyelia in 2010 but told again that this isn't going to affect me either. Following this I was diagnosed with Tethered Cord Syndrome and Diastematomyelia. 2012 was the beginning. Many surgeries followed to try to control this body of mine. I felt that while I was trying to educate myself it was just as important to help some of the other medical staffs that I will forever be connected with to keep me as strong as I can be. It hasn't been easy and at times I wondered how much I was being heard. As time passed I know people realized that seeing my MRI scans and explain things certain things made since. I know with me they have to step out of the box that they have done before and realize that even doctors get baffled as well as the patients themselves. CSF goals are to raise money and awareness to the medical field and to the lay to get a better understanding of these debilitating disorders!
Growing up in a small town, my family became very close with the other residents of the town. One of the families learned about Chiari after the oldest son was diagnosed. By the time he had graduated high school he had spent more time in the OR than he did at school. Because of Chiari he was not allowed to play soccer, a sport which was a big part of his life, and he was not able to have a normal childhood because of the constant pain and frequent trips to Chicago for surgeries and doctors visits because it was the only hospital that had extensive knowledge of the disorder. This family started to grow awareness in our small town and I wanted to be a part of it because no child and no person should have to live through what this family had to go through. I have brought my passion for CSF from Cleveland, Ohio to Columbus, Ohio and will take it with me wherever I go because the more places I travel, the more people I meet who have had life altering conditions within CSF the more I want to find a cure so that every person will not have to put their life on hold for a disease.
CSF has been an invaluable resource to me and it is a marvelous organization! They are at the forefront of educating, researching and bringing about awareness of Chiari, syringomyelia as well as related conditions. Having several comorbid conditions and finding them so poorly understood in the medical community, the physician lectures that are available online have helped me to understand them better and become my own best advocate. I refer others often to CSF's site to learn more - patients, caregivers and medical professionals. Funding is critical to keep CSF moving forward with the important work they do. I am honored to be involved as a unite@night walk chairperson for the past 3 years as well as becoming the local chapter representative in my area.