Transcript
Good afternoon. I would like to thank Dr. Callen, the University of Colorado, and the Spinal CSF Leak Foundation for this wonderful conference and the opportunity to speak to you today. Awareness and advocacy have been a big part of my spinal CSF leak journey. My journey began in about 2010 when I began having stabbing pains on the top of my head every time I stood up from getting something from under my cabinets. After four days of this, I looked at my husband and said, “There’s something seriously wrong with me.”
My local neurologist ordered a brain MRI, and it showed brain sag and dural enhancement. He told me I had something called intracranial hypotension. I went home and immediately started looking things up on my computer. I admit it – I am a research-aholic. When my children were young, they used to tell people that my bedtime reading was the Merck Manual. So, while I was researching on the computer, I began to realize that I had a lot of the symptoms listed.
My symptoms continued to get worse. I would turn on a movie to watch and, six hours later, wake up. I couldn’t remember anything. I couldn’t stay awake. People were talking around me, and I would hear them, but I couldn’t respond to them. I could understand what they were saying, but it just didn’t make sense. I slept 20 hours out of 24. I don’t really remember anything from those first few months. Slowly, my overall fatigue improved. My limited uptime was basically researching and trying to work a little bit. I began to realize just how about every symptom I had was in the books. I was pretty much a textbook case.
I tried to have about four hours of uptime, and I was fortunate that all my symptoms went away when I laid down. During my research, I found a forum on neurological disorders, and there was a lady who began communicating with me. She called me on the telephone. Her husband was the one with the leak. She told me how to live my life with the leak. I will always be grateful for that conversation. She told me no bending, no twisting, no lifting, and no reaching. She told me not to load or unload the dishwasher, not to do the laundry, not to sweep the floor. She told me to have someone take everything out of my cabinets that I would use on a daily basis and put it on the counter so I wouldn’t have to reach anymore. We talked for about 90 minutes. She became my lifeline – someone I knew who was going through this each day.
Shortly after that, several folks left the forum and formed the Facebook page. That was around 2012. The Facebook page grew rather quickly. I began to understand that I was not alone in this journey. I began to share my experiences with others, and them with me. We began to share what worked and didn’t work for us each day. We began to share our encounters with doctors. I learned there were only two doctors in the U.S. that were treating people with spontaneous CSF leaks at the time. I learned that people – and doctors alike – didn’t know much about leaks. At that point in my journey, I couldn’t even imagine what it must have been like for people with a leak before me who didn’t have social media. I learned so much and I needed others like me to support me.
In 2014, when the Spinal CSF Leak Foundation was founded, it became a wonderful way for people like me to find reliable information about spontaneous intracranial hypotension and spinal CSF leaks. Because of the Foundation, so many other great resources evolved. For instance, the Foundation joined Inspire, which is an online community that includes a spinal CSF leak community. They joined NORD – the National Organization for Rare Diseases. These organizations make it easier for someone with a leak to share facts and updated information about their condition to family, friends, coworkers, and even their physicians. Information was spreading, and I was sharing it with everyone I knew.
While traveling to Louisiana in 2016, I asked to meet a friend I had met on the intracranial hypotension Facebook page. It was hard to describe what that meeting meant to me. It was the first time I met someone in person with a spinal CSF leak, just like me. After many tears, we sat down and talked for a couple of hours. I will never forget that meeting.
Also, in 2016, I was asked to be co-chair of the Volunteer and Awareness Committee for the Spinal CSF Leak Foundation. I was excited to give back to an organization that had already helped me so much. This small community of people who were suffering from leaks themselves met monthly via telephone conference to discuss how we could move forward with awareness – how to spread awareness among family, friends, our physicians, and even the general public. We came up with ways to fundraise, which would ultimately raise awareness. We discussed what could be added to the website so people could understand our condition better. We planned the first leak week and we decided on small gimmicks like plastic bracelets. I was glad to see the “Come Back” campaign, which was really popular at the time. All these things gave myself and others ways to spread awareness and advocate for themselves. I personally give a bracelet to every physician that I come in contact with.
In 2017, the Spinal CSF Leak [Foundation] held its first conference. I was feeling a bit better, and I was bound and determined to go. I wanted to learn more – I needed to learn more. I wanted it to be successful, and I wanted to meet others who had leaks. My husband and I rented a small VRBO – and I mean small. It was a small 10-by-10 living space and a small kitchen. The photos we received made it look even smaller. Well, being the social person I was, I decided I wanted to host the participants of the conference. I didn’t even know how many were going to attend. I just wanted to give us some time that we could talk and get to know each other a little bit. I knew the apartment was tiny, but I also knew we would not have time to chat at the conference to sit and really chat. So, I decided to go for it. I put out an invitation on the Facebook page, not knowing how many people would even come. I was explaining to the awareness and fundraising committee about how small our apartment was, and one of the members said, “Oh, my father lives in the area – he would be happy to let us use his home.” At this point, we put out the extended invitation to all the physicians as well. We had about 20 participants. It was a lovely reception where we could all meet and talk about our illness, but we could also talk about our hopes and dreams for a better life.
By this time, Spinal CSF Leak Canada and the CSF Leak Association – which is a charity based in the UK – were formed. Individuals from the main CSF leak page had also made a group, what we call a “sister group”, for people experiencing rebound high pressure. A couple of people from the main Facebook page wanted a book study, so I began a sister group that became a place for people to come together and pray for one another and our intentions. People like me need credible information and need to make personal connections, and it is happening. People with leaks are meeting all over – in waiting rooms while awaiting procedures. People are also meeting in their hometowns.
When I found out that there was someone in my hometown that had a leak, she was coming to the hospital for a procedure. I asked to meet her. I connected with her and went to visit her in the hospital. She told me, for the first time, she realized she was not alone. That’s how most of us feel when we meet someone else with a leak. I tried really hard to heal on my own. I had decided not to have any procedures.
My symptoms had improved twice, and I thought I was sealing on my own. When my symptoms came back stronger for the third time, I decided to seek treatment. I had been suffering for 10 years – 10 very lonely, very painful years. I had CSF venous fistula surgery in 2019, and in December, I’m celebrating five years leak-free. It took me – Asia and I are celebrating five years leak-free – high five! It took me many years to get my energy back, to get my muscles to perform the simplest of tasks. After 10 years of being mostly bedridden, it was a struggle.
I continue to advocate for those suffering from leaks by telling anyone who would listen to our story. A friend of mine who is an RN asked if I wanted to tell my story at a conference of emergency room nurses. How could I refuse? She gave the basic PowerPoint presentation about leaks, and I told my story. We were very well received and have been able to present at several conferences in Alabama.
Living with a spinal CSF leak is a very lonely journey. We lose our friends. We lose family. We seem to fall off their radar when we can’t participate in events with them anymore. Many times, our family and friends don’t even believe us. We see our spouses, our parents, our siblings, and even our children go on about their life without us.
But there is hope. Every time we verbally share our experience with others, every time we share what the Foundation is doing, every time we share a link from the internet, we plant seeds of hope. More and more people believe us. More and more people begin to look up information on their own. Every time we share our experiences with our physicians, and every time we give them information from the Foundation website, we plant seeds – seeds that we will probably never, ever see grow personally, but they will grow. We are spreading awareness. We are advocating for ourselves. We are spreading hope. We have hope for the future, hope for a cure, and hope for a better life. Thank you.