Cerebrospinal Fluid Leak

Join the Conversation on
Cerebrospinal Fluid Leak
849 people
0 stories
80 posts
  • About Cerebrospinal Fluid Leak
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in Cerebrospinal Fluid Leak
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Sara Bohling

    Finding Little Moments of Joy While Enduring CSF Leak

    December 2016: The holiday season was in full swing. I was busy wrapping gifts for our young girls, baking cookies, doing holiday and year-end activities at work, all the usual things. Fast forward two weeks, to early January 2017; I woke up one day with severe body aches, elevated temperature but not an official fever, and more-than-usual fatigue. Being a nurse for nearly two decades, I assessed the situation and determined that I was well enough to go to work. No official fever, no cough, no GI symptoms, means I can make it through the day. I survived that 12-hour hospital shift, but barely. By the end, I was in so much pain — every joint and bone ached, especially my back. From the base of my skull to my tailbone felt like someone had shortened my spinal cord and it was being stretched beyond its limit, just to connect one end to another. The following days were the same. On day four, I woke up, put my feet on the floor to shuffle to the bathroom, and BAM! I was hit with crushing pain in the back of my skull — like someone had taken a baseball bat to the area where your head and neck connect. The pain was unexpected and took my breath away. I knew I needed to be seen by a medical provider, today. Nurses are often reluctant to go to the doctor, unless severe bleeding or loss of consciousness is involved, so my husband knew this was serious. We got an appointment right away and off we went. While waiting in the lobby, filling out the usual intake paperwork seemed extra challenging. I was having trouble focusing, reading the questions, and answering the easiest of things — home address, phone number, etc. I chalked it up to distraction from the pain and waited for my name to be called. The provider assessed me; nothing drastic was noted but I was sent for a CT scan, just to be safe. The results came back normal, so it was assumed I was having a migraine. I was told to go home and rest. The following days turned into weeks; I continued to see a worsening of my condition. I returned to the doctor multiple times. More imaging, tons of lab work… all normal. Yet I did not feel normal, in any sense of the word. They decided I must have viral meningitis due to the symptoms I was experiencing. As many know, meningitis can involve a lengthy healing process, with the main prescription being rest. So I was to continue resting and things should improve. However, I continued to have excruciating pain when I transitioned from laying to sitting or standing. My confusion and sense of disorientation and brain fog were overwhelming at times. Nausea was in full force when upright. My heart was racing and pounding out of my chest. I experienced major sensitivity to light and sound. I was now wearing sunglasses inside, with all the blinds pulled, and could no longer stand to watch TV. The noise of the microwave beeping sent me over the edge. By May 2017, I was staying in my pitch-black bedroom, curled up in bed, in silence. Sometimes sleeping, sometimes just existing for hours on end. I said daily “I love yous” to my family, but that was all the interaction I could handle. My husband was continuing to work full time, coming home to prepare meals, bathe, play with and raise our girls, as I was being held captive in a body that was abandoning me. I began crawling as my mode of transportation, the limited times I got out of bed, because my head didn’t hurt as much if I didn’t change positions to fully upright. I was eating meals lying flat in bed. I went through more doctor and specialist visits, more testing — all still normal. Some doctors even refused to treat me, saying it was “all in my head,” or “I don’t know what’s wrong with you, but I can’t help you,” before walking out of the room, leaving me to continue holding this heavy weight of illness and unknown. Finally taking matters into my own hands, I began to use my nursing knowledge to carefully and wisely search online for patients with similar conditions. I found many things — Lyme disease, meningitis, vertigo, the list goes on. Then I stumbled upon spinal CSF leak. I was most familiar with those affecting women after childbirth when using an epidural. But I last gave birth four years prior, why would this be affecting me now? More research, an incredible Facebook group, and the Spinal CSF Leak Foundation website helped me to learn that while it is a rare diagnosis, the most common causes of spinal CSF Leak are from surgeries or procedures. It is also possible to get a spontaneous spinal CSF leak. I found a local doctor who agreed with this diagnosis. We attempted treatment which resolved the issue short term, only to have it return a couple of months later. More research led me to travel 1,200 miles to be seen by some of the world’s experts in treating this condition. They also helped me uncover that the viral illness producing the body aches, etc. that started this cascade, was likely the trigger of my CSF Leak. While we will never know the specific name of that virus, when know it was powerful and impacted my entire nervous system. Whether the virus, the nearly one year in bed, or likely a combination of the two was to blame; I was also experiencing dysautonomia symptoms. When the body’s autonomic nervous system; responsible for heart rate, breathing, temperature regulation, digestion, etc. is in a state of dysfunction. I was fortunate to have my spinal CSF leak repaired after multiple attempts and multiple providers, and it has remained sealed since October 2017. An average patient with CSF leak symptoms can wait a year for an accurate diagnosis, so to have mine addressed and resolved before that timeframe was very fortunate! Today, I continue to recover and heal from my body’s unique history and medical challenges. I am using a unique interdisciplinary team approach to physical therapy, to explore and explain the science of postural adaptations, asymmetrical patterns, neuromuscular applications, and more. It has healed me in ways nothing else has come close to. Throughout my entire journey, I have focused on finding joy in the small moments, from giggling with my girls while I lay flat in bed, to making it to the front porch to feel the sun on my face, to the moment I was well enough to stand and when I “got” to do the dishes for the first time in over a year — all very intentional moments of joy. I have just published a book, sharing more of my story, fighting invisible illnesses and how the power of positive thinking along with fierce faith, has gotten me to where I am today. Check it out: “When Grit and Grace Collide: Persevering Through Life’s Challenges with Grit and God’s Grace.”

    Community Voices

    Recovering from surgery

    I'm struggling, friends. 12/22/2021, I had surgery (posterior fossa craniectomy, duraplasty & C1 laminectomy. Went well until I developed a CSF leak that required another surgery on 2/17/2022 to find & repair the dural leak. I'm back to work & outwardly doing well but behind closed doors...not so much. Exacerbation of depression & anxiety, sleeping a lot, no energy, no motivation, withdrawing from social activities & just feeling scared & stuck
    #Syringomyelia

    5 people are talking about this
    Lakyn

    How the Disability Community Helped When My Chronic Illness Got Worse

    I could write about the trenches of disability and chronic illness. Needles in my spine. Brain surgery. Passing out in front of my friends at school. The constant nausea, missing out on events, depression and anxiety. Chronic illness and disability are teeming with valleys and trenches; holes so deep sometimes you feel like you can’t pull yourself out. But what if you didn’t have to pull yourself out? What if there were others out there who have been in that same trench, fighting that same battle as you who are ready to help you through your hardest battles? What if all you had to do was look toward Instagram to make you feel a little less alone? Today, I want to write about one silver lining of living with a chronic illness or disability — the community. I’ve been “manageably chronically ill” (I would call it) most of my life, but the past year has led me further from “chronically ill” toward identifying as “disabled” for the first time in my life. I started 2021 in the ICU with a massive CSF leak where there was virtually no spinal fluid left in my spine and ended 2021 with major brain and neck surgery to have my skull decompressed and fused to my spine to combat dangerous spinal cord and brainstem compression from severe instability in my neck. 2021 was understandably one of the lowest, longest years of my life. I had to quit my job, enroll my daughter in full-time care, and spend most of my days unable to get out of bed, awaiting surgery as my last shot at getting some of my life back. Upon hearing that I needed an Occipital-Cranial Fusion and Chiari Decompression surgery in late 2021, I decided to jump into social media to find others who had had this procedure done, which turned out to be one of the best decisions I have ever made. I came to hear their stories, to get their tips, and to learn from their experiences. However, what I found was far more valuable than anything I set out for. I found myself instantly and overwhelmingly welcomed into the virtual chronically ill and disabled community. Instantly. And. Overwhelmingly. Social media sometimes gets a bad reputation. We spend too much time on it. We miss out on real-life moments because our heads are stuck in our phones. It leads to unfair expectations as influencers carefully curate their lives to look picture perfect on the square grids where they can tell whatever story they choose. And before this year, I would have completely agreed with this assessment of the dangers of social media. However, after getting involved in the chronically ill and disabled community on social media, this assessment could not be further from the truth. I was recently talking with one of my Instagram friends about my post-surgery recovery when I mentioned that I made it through an entire meal at the dinner table with my family, which I haven’t felt well enough to do in over a year. She celebrated this small victory with me as if I told her I climbed Mt Everest. It wasn’t until then that I stopped and realized how minor sitting through a meal really was. Most people do that three times a day and don’t even think about it. Her celebrating this small win with me showed me just how important community is in the disability space. No one understands our daily battles like we do. No one can empathize with the struggles like we can. No one can help pull us out of our trenches better than someone who spent time in that same trench themselves. And no one can celebrate these small, but actually huge victories for each other like we can. As one of my good friends from @TheUnheardOnes says, “your story is my story, and my story is your story.” This is the true beauty of social media–finding hundreds of people from around the world who share your illness, your pain, your journey, and therefore can share in your successes, your path forward, your healing. I often think about if I could do my life over again without my health problems, would I? And I can honestly say that I don’t think I would. Without my disability, I wouldn’t be so passionate about inclusion and accommodations. Without my disability, I wouldn’t be as compassionate and understanding toward the visible or invisible load others might be carrying with them. Without my disability, I wouldn’t have been able to raise my young daughter to view others who may look different from her with so much respect and love. And without my disability, I wouldn’t have made some of the best friendships I have ever had, ones I am not sure I would trade my diagnosis for. If you are disabled, or are a caregiver for someone who is disabled, or you’re feeling alone, or even if you just want to learn more about disability and inclusion, I encourage you to jump in and create or deepen your friendships with other disabled people, both virtually and in real life. Follow chronic illness or disability hashtags. Friend the people sharing their stories. Research the diseases they are raising awareness for. Take the steps they suggest toward making your own life more inclusive. I promise, it will change your life, just as it has changed mine. And if you ever need a friend who can empathize, cry with you, share in your small victories, or help you find your own online community, I’m always available to talk, @BracedAndFused.

    Community Voices

    Future appointment for potential CSF leak

    About 10 days ago, I was unexpectedly and urgently referred to neurosurgery and I'm so scared. The letter came through yesterday saying I'm on the waiting list.

    I didn't expect to be referred. I was trying to send a sample but they needed me to see a nurse, which I did and she just said they could do a test.

    But then I spoke with a doctor just for a medication review and she saw the notes from my previous chat with the nurse and asked me about it. She said she thinks they won't test it so she needs to double check. She rang me back and told me she has referred me urgently to neurosurgery and I immediately had an anxiety attack.

    I was hoping for a simple little test to be done to rule it out. I know my symptoms don't make much sense and they definitely don't seem to be allergy based. I've had the same allergies all my life, I've been affected like this before. It's affecting my life and my work at his point, it's embarrassing.

    So at the same time, I'm grateful to have a doctor who's on the ball about all of this and felt it necessary to refer me but I can't help but feel like I'm wasting their time.

    What if it all comes back normal? I feel like the doctor will laugh at me and patronise me and act like I'm being a hypochondriac.

    It sounds terrible, but I hope they find something wrong just to be like 'see I'm not a hypochondriac, I knew something was wrong'.

    Idk, I'm just doubting myself. I find it so hard to advocate for myself. :( I haven't even told my mum because I don't want her to laugh at me basically saying it's nothing and making me feel worse. I'd rather hide it and only say something if the findings do show what I thought.

    Either way, maybe they can figure out what's happening and work out a way to stop it happening. I don't want to live with this for the rest of my life.

    Any advice/help? Anyone been to see a neurosurgeon?

    #EhlersDanlosSyndrome #CerebrospinalFluidLeak #PosturalOrthostaticTachycardiaSyndrome #Anxiety #MentalHealth

    Community Voices

    How much can one person take ?

    <p>How much can one person take ?</p>
    6 people are talking about this
    Community Voices
    Community Voices

    Not feeling good today.

    Does anyone else just wake up and feel like crying because they're still tired? 😔 I went to bed early last night and had to wake up very early for work. I usually sleep well too, I often sleep all night but it's never enough. I've felt miserable since I woke up because every morning, I wake up feeling too tired to get out of bed but I still have to for work.

    Then today I arrived at work and my nerve got trapped in my elbow as I walked in which just felt like the icing on the cake.

    My job is a physical one, often walking a lot and no time to sit down. Lately my legs have just been aching and hurting following a shift. Just driving home hurt my legs and it only relieves when I raise them and rest. The intense full body ache can be so overwhelming sometimes.

    I feel like I'm falling apart but no one seems to notice, care or take it seriously. All my wisdom teeth are impacted so they are now causing me problems and headaches. I feel like I'm presenting symptoms of a CSF leak but I doubt any doctor will take me seriously so I don't want to see them, even though it's affecting my work.

    I've got a huge EMA due at the end of the month and I've lost all motivation. I just had a huge row with my mother which never happens and that's made me feel worse.

    On top of that, my friend is constantly messaging me to go out, to go on holiday, to go away somewhere and as an introvert, it's all kind of overwhelming. We are going out tomorrow which means another early morning, and whilst I'm not particularly up for going, I know it's not good for me to stay home all the time.

    #EhlersDanlosSyndrome #POTS #ChronicFatigue #CheckInWithMe

    3 people are talking about this
    Community Voices

    Anyone want to be my friend?

    <p>Anyone want to be my friend?</p>
    28 people are talking about this
    Community Voices

    RA in Cervical Spine? #RheumatoidArthritis #neckpain

    I’m waiting on a diagnosis - 99% sure it is seronegative arthritis. In the last few weeks I’ve been having issues with my neck. It’s painful and stiff and my head feels like it’s a thousand pounds. Eventually I get a headache but the tricky part for me is that I also have a CSF leak and the headache from that is similar to what I think is originating from my neck.
    I’ve searched but I can’t really find any information about the specific symptoms of RA of the neck so I thought I’d ask here. #ChronicPain

    16 people are talking about this
    Community Voices

    I have fibro, chostochondritis, & pain from a CSF leak on the brain. I am also obese due to a binge eating disorder. How do I get appropriate

    treatment, respect, and support from medical staff and others who do not take my documented diagnosis seriously but blame my weight?

    They say that I am making excuses and refuse to help me until I help myself by losing weight. I am working on weight loss but it is extremely slow because of my pain, ptsd, borderline personality disorder, & bipolar. All of which many feel like are excuses.
    #Fibromyalgia #BorderlinePersonalityDisorder
    #SpinalCSFLeak #Obesity

    5 people are talking about this