To be honest, I never wanted to share this story. It came deep feelings of personal failure, embarrassment and suffering that led me to the brink of insanity and death. I have hated to share the details of what happened to me when I started leaking brain fluid and my chronic spinal fluid leak impacted every aspect of my living but somewhere deep down I knew that I had to. I had to share my story for many reasons: the needs of my family, the suffering that I uncovered as I learned more about my condition, the others I have met who are too sick to share their own. Primarily, I am sharing because my commitment to the the belief that people working together can do unimaginable good in hopeless situations. My story was never really about me, it was about thousands and thousands like me - about deep unrelenting human suffering and the power of family and friends when everything else fails. I had known suffering before but nothing like this. The physical and psychological suffering of having a chronic spinal fluid leak that would not stop broke me over and over and over again. It came to the point, many times, where I no longer even felt like a human being. I was not even trying to survive I was just suffering. I realized that in order for me and my family to create awareness and find a cure I had to get honest about what living with a leak is like so I started sharing my story through social media. Nothing about it was pretty, in fact, being confined to a bed in constant pain and undergoing dozens of failed treatments while missing my 3 young children’s birthdays, first days of school and all the little moments was so profoundly painful. I cannot talk about it today without tears streaming down my face. What little I have come to learn in the past 4 years is that a healthy life is a gift. . . being able to brush your teeth, take a shower, heat up a frozen meal, talk, walk, think clearly is all a gift. Life is a gift but being able to live it is the best gift ever. It is one I never fully could comprehend until it was all stripped away. Looking back is way easier then living in it. I have come to understand that life can break you so very badly over and over again but there is something in us that is not part of this world. There is a spirit that is far more resilient than I ever thought possible. I saw it when it was all I had left, it was there just enough to keep going.
My spinal CSF leak story is long and painful but it has a beautiful start. In March 2015, I was 33 years old, sitting on the operating table getting my spinal epidural. I was so excited to meet my 3rd child who was going to be delivered via planned c-section. I had my amazing son a few hours later and we called him Joshua because his name means "God is our Salvation". As I write this, Joshua is now 4 and he is jumping up and down on the couch dancing and full of life. I came home from the hospital not feeling well but I was sure it was just because I had a third child, I was older, it was the hormones. I had never heard of a spinal fluid leak nor had I ever heard of a story like mine before. Looking back, I can see I was sicker than I realized. There were late night feedings where I would be so unwell I would lay on my kitchen floor too dizzy and sick to get up. The constant nausea, sweating and afternoon head pain were nonspecific so I tolerated them until the pain lasted all day long and I could no longer bear it. After seeing some great doctors and having scans, I was told I suffered from intractable migraines. I began a few months of several hospitalizations, injections, and dozens of medicines. I returned home from one of my hospitalizations in order to make it to my daughter's 3rd birthday but I had to sit in the back room at my parents' house because I could not handle any stimulation. I eventually had a spinal tap and there was not enough fluid in my brain and spinal cord to get a sample. After a few more tests, a spinal fluid leak was diagnosed 8 months after my son was born. After weeks of 24 hour bed rest and failed IV steroids, I began getting blood patches. It did not sound nearly as bad as what I had already endured and the outcome looked good at the time.
For the blood patches, I found myself laying on my stomach with my arms stretched out over my head while my veins were accessed for blood and my spine was prepped for the procedure. I would be getting a high volume blood patch so my own sterile fresh blood would be quickly transferred into the spinal needle that would push my blood into my spinal column. The hope was that the blood would create a clot and my leak would stop. As the blood was injected into my spine, my legs would shake from the pain and tears would stream down my face. High volume blood patching was thought to give me a better chance at sealing the leak. I stood up from the first procedure a day later and it was the first time I did not feel my brain hurting. All I could do was cry of joy and thank God it was all over. I went home so thankful and full of hope. A few days later it all came back and I found myself again laying on my stomach this time having blood taken from both my wrists and injected again into my spine. I bit my cheeks and knew there was nothing to do but take the pain. I closed my eyes and pictured each of my kids and told myself I was doing this for them. I could handle anything for them. I stood up again but my head pain was still there. Hopelessness settled in. I stayed for weeks in the hospital - 24 hours a day staring at the ceiling, unable to move my spine or neck or head. I could not bear to let my children see me. After the 3rd patch I was able to have the bed up and see my oldest son for a little bit on his 5th birthday. He had a party with my family while I was at the hospital and I knew from the doctors faces they did not know what to do. There was more imaging done but this time no leaks were seen. At the time, if they did not see holes, then it was thought you did not have one.
Over the course of the next two years I went to Northwestern, Hinsdale Hospital, Mayo Clinic, Stanford, Cedar Sinai and Duke. I had seen dozens and dozens of doctors. I had more blood patches and eventually I had a full exploratory surgery in my whole lumber back. Two small leaks were found and repaired with fat and dural grafts. I came home late Halloween night on a walker. I walked up the street with my husband for the first time and I was full of hope. I was so happy they found something that was causing me to become so sick. Before that exploratory surgery, I lived in my bedroom searching and searching online for answers. I would stare at the ceiling fan wondering if it would hold my weight when despair was too much. But after the exploratory surgery and coming home with some relief I found hope. Walking home that one block where my feet touched and the thought that I was healing was pure joy. I began working on building my hand muscles, and cognitive function as well as learning how to live without bending, lifting or twisting my spine. I did no worry about taking this extra care, I just wanted to live. I just wanted to be with my children and maybe even one day sit at the park and watch them play.
I relapsed before my stitches healed and heartbreak and fear were my closest friends. I hated God and could not understand what I did wrong, I obsessively followed every rule, despite my maternal instincts I did not lift or hold my children, I dressed myself using assistive devices. I had been sick for 2 ½ years and the last possible hope was hopeless. The neurological symptoms that were most prominent were mostly related to the central nervous system ( head shaking, weakness in my arms and legs). I had already caused so many problems I needed to recover from but even more important then all of that was the sadness in my children’s eyes. Up until this point, only my oldest son knew me well. My daughter and little son only knew hospitals, emergency rooms and a mom who cried all day and laid in bed too sick to even talk to them. I searched online trying to find resources sick moms and how to be a mom while bedridden, and how to talk to your kids about what is wrong. I wanted to help them cope. I could never follow through because days would go by and I would be too sick to mother them. I came to really understand that sheer will power, begging God, pleading, crying and screaming would not fix me. I told God, if You are out there then I want nothing to do with You ever again.
I could not lift my head. Noise and stimulation made me feel ill. I think back and it pains me to know I missed 1st days of school, first steps, just everything. When I could, I would lay flat on a hospital bed in the living room and watch Jahary and the kids eat dinner. I could manage this on a good day and after an hour I needed to be in silence in my bedroom or my brain was going to explode. My legs would shake so badly that walking was hard. The sadness in my young children's eyes reminded me again how much I was hurting them and how desperate I wanted to be a mom to them. had another blood patch and went as I prepared to have my 3rd blood patch.
I later returned to Duke and I begged God let this next time work. It did not work and I went home in as much pain as I was in before. My leaks were no longer showing up on any imaging. The neurological symptoms began to get more severe and my arms and legs would be so heavy I laid flat in bed all day with full time daycare for my kids. I had a trip to Mayo planned and told myself to hold on until I get there. After flying to Mayo because I was too sick to manage in the car, I met with the doctors and afterwards found myself in tears, kneeling on the floor in the bathroom totally devastated. They did not know what was wrong with me and they could not help me. The trip almost broke me and I went home and spent months confined to my bed in so much pain and suffering from tremors, vertigo and head pain. I was constantly consumed with a fatigue so profound that breathing was difficult work. Nannies came and went, months passed and I spent my days flat in bed - even a pillow under my head was too much. I could not focus on a tv show and no amount love, or instinct could help me get to my children. I was trapped inside side my bed, my room, my body. Eventually in October of 2017, I underwent more blood patches at Duke but returned home without symptom relief. I started palliative care to relieve symptoms and decided to take a break from procedures. The medications from the palliative team were not curative, but they provided some relief. Months later I experienced life threatening infections and was hospitalized. After recovering from the infection, in the spring of 2018, I started experiencing more periods of relief. But it was an ongoing roller coaster of physical and emotional symptoms. Little by little I started to get relief. No one really knows why. Maybe the patching at the last visit to Duke eventually started working and I have been healing ever so slowly overtime. Maybe it is my body and prayer and medical procedures all together. I believe prayer, my family, my community and the skilled physicians taking care of me have all contributed to how I feel today. I pray it lasts. I pray I can continue to support people who suffer and the medical professionals who fight for us everyday. I know I will continue to lean on God and this gift of life.
Are you all better now? Is the question I get the most. I never know what to say. My last procedures were at Duke in the Fall of 2017. I had no idea how difficult integrating back into a normal life would be. The nightmares, panic attacks, and fear of a relapse consume most of my mind. During this first year, it has been a slow to recovery - physically and psychologically. I have had so many relapses with this illness. My three kids have grown up so much while I was sick. The impact of my illness on my children has been difficult to swallow. I've had to relearn how to manage a calendar, go to the grocery store, cook dinner, and manage the household stuff that comes with kids. I have done more living in the last few months than I have done in years. Cleaning up a life that stopped 4 years ago has been overwhelming and I still have a very long way to go. However, most days I can walk my kids home from school, read them stories, give them baths and think about the future. I have had to relearn how to be a mom and wife. At this point I have no idea if I am all better but I doing way better. I have days that are very rough and evenings when I am so sick that dinner plans have to get cancelled. I will continue to fight everyday to pull myself back and lift the others who suffer from this illness. It is my hope that by sharing my story, we will create awareness for this rare illness and raise funds to support research.
Thank you for listening, praying and supporting this effort.