Please consider supporting our efforts to raise money to help Sarah and her husband James offset medical and related expenses for her continuing struggle with a chronic and debilitating spinal CSF (Cerebrospinal Fluid) leak condition. Continue reading below to gain insight into Sarah's condition and her story. Her husband, James, travels a lot for work and she is nearly completely bedridden, so she will need at-home care providers especially when James is traveling. Medical and travel expenses for ongoing care and treatments is relentless.
What is CSF? What is a spinal CSF leak?
Cerebrospinal fluid or CSF is a mostly watery substance derived from blood plasma that circulates through and around the brain and spinal cord. The dura mater is a thick membrane of connective tissue that surrounds the brain and spinal cord and contains the CSF. This less well known but extremely important biological system provides functions that are critical to the healthy operation of the brain and neurological system. A spinal CSF leak means the dura in the spinal cord is punctured or torn and leaking CSF. This results in low CSF pressure and causes many strange neurological and physiological symptoms. When a CSF leak won't heal properly it can be crippling and disabling.
If interested, learn more about CSF and CSF leaks here:
Sarah's personal story:
It all started back in 2015 when continuing back pain prompted Sarah to try an epidural steroid injection. Her dura was accidentally punctured during this procedure. This is a known but not advertised risk and for most people the hole usually heals within a week or two. The condition is not well understood and often misdiagnosed as was the case with Sarah. It took many months of research and frustrating interactions with many doctors to understand what happened and get an accepted medical diagnosis.
That was 3 years ago and she is still suffering and essentially bedridden. Since then she has traveled across the country to specialists at Duke University and Cedars-Sinai hospital, endured many procedures and medical missteps, most recently a laminectomy (surgery that removes part of your vertebra) to access and attempt to patch the leak. Regrettably she had no improvement and is still recovering from the surgery.
Sarah's own writing describing her experience with CSF leak symptoms:
"The symptoms are severe. It is insanely disabling and debilitating and so many people suffer everyday, including myself. Your brain needs this cerebral spinal fluid!! When you don’t have enough to surround your brain and protect it so it floats in your skull, let me tell you it’s a nightmare. It is NOT just a headache. I suffer with headaches, head pain and pressure, occipital pain, neck pain, nausea, vertigo, severe fatigue, rocking feeling like I’m on a boat all the time, tinnitus, imbalance, extreme hearing sensitivity (opening a soda can is like a gunshot to my ears), squeezing pressure like feeling in brain, can’t think clearly, stumble when walk, a sensation of unbearable heaviness when upright, and myriad other neurological problems. It’s beyond what you can imagine. Everything gets worse the longer you are in an upright position. I am essentially bedridden. It gets so bad I want to crawl out of my own body, to just get some minutes of peace."
Though she and James live in Whitewater WI, she is currently staying with James' brother Phil and his wife Allison in Glendale CA where she sought out the most well respected specialist in the field at Cedars-Sinai hospital working with chronic CSF leak condition patients. She has been in LA since February of 2018 where she has had multiple blood patches and the spinal surgery. She plans to try one more blood patch there and then attempt to come home to Wisconsin.
Due to the symptoms, traveling is extremely difficult. Driving that distance is out of the question. If she flies commercial, they will have to purchase three tickets for her so she can lie down after takeoff. They are also considering private medical air transport. Regardless, depending on various factors, it could be quite an expensive endeavor getting her home.
"It’s almost impossible for me to describe the impact of being this sick for this long, relentlessly physically neurologically miserable. There are countless days where I say to myself “just make it through this next hour “, and the hour comes and I say it again. I have no life except simply existing through this pain and misery, while trying to have hope that the next painful procedure will fix me. The physiological trauma of this also beyond measure. Having something happen like this from a “routine” procedure and on top of that having to deal with medical world that is largely [ignorant] about it and having to navigate this by myself and seek out expert care. It’s exhausting and takes such a toll on every part of you physically and mentally."
"My life before leaks was a good normal life! I was active, had no major health issues, I worked, shopped, cooked, did chores, was avid road cyclist, worked out daily, took my dog for long hikes, got together with family and friends, traveled with my husband. A good normal life. That was taken from me in an iatrogenic instant. Hard to find words for just how hard and life changing this has been."
If you would like to read more about Sarah's CSF leak story, here are two of her posts on the subject:
I also want to express my gratitude and appreciation for James, his sister Maria, Phil and Alison, and his entire family for everything they have done to help care for Sarah on an everyday daily basis.
We remain hopeful that someday Sarah's leak condition will be cured and she will recover, but for now the reality is she will need home care-givers, home healthcare, meals on wheels, travel expenses to get back home, travel and accommodations for trips to other heath organizations as needed, and her out-of-pocket health care expenses continue rising.
Please consider helping our cause to continue to care for Sarah and her battle with this unrelenting and devastating condition. Sarah and James and their extended families will be forever grateful for your generosity.
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