Tethered Spinal Cord Syndrome

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Tethered Spinal Cord Syndrome
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    Community Voices

    1 Week Post-op #EhlersDanlosSyndrome

    I had my Tethered Cord Surgery on September 14th. It is both better and worse post-op than I expected. The hospital experience was hellishly painful, but since arriving home, I’m moving around better than I expected. I am more fatigued and more in pain than I remember being after my C1-C2 fusion (although almost 3 years might have softened the memory). Bowel and bladder seem better, but I am concerned with some heaviness in my legs and some discomfort in my hips like that pre-surgery. The real test for my walking will be leaving the house for my follow-up with my neurosurgeon. For those who have also had tethered cord release surgery: how did it improve your symptoms and how soon did you notice improvement? Did it take a while for the full effect to be seen? I know that there was always the chance of some of the neurological symptoms becoming permanent, but I hope that this is not the case here. I’d welcome any input/ would appreciate hearing your experience with tethered cord release surgery; I believe my was L5-S1 and I had an occult tethered cord, if that helps. God bless… #EhlersDanlosSyndrome #tetheredcordreleasesurgery tetheredciresurgery #laminectomy

    7 people are talking about this
    Community Voices

    I’m new here!

    Hi, I’m new here, I’m Samantha from RareResilience where I share my journey with chronic and rare conditions, my fight for survival & justice and I also advocate for others in similar circumstances. I’m a senior psychotherapist and Psychology major, with additional training in healthcare, SEN, functional medicine & nutrition.
    I’m here to meet likeminded people, to share my writing & journaling & to connect … connection is what we all need I think 💖💪🏼
    #MightyTogether #ehlers-DanlosSyndrome #Dysautonomia #Dystonia #PelvicOrganProlapse #TetheredSpinalCordSyndrome #Scoliosis #PTSD #complexpost-traumaticStressDisorder #Anxiety #Grief #RareDisease

    3 people are talking about this
    Community Voices
    Community Voices
    Community Voices

    Thoughts on going back to school ? I asked my daughter to comment on the pro and cons. "So far, my back to school experience has been virtual, as most of the schools are. Its been challenging, but intriguing to find out how to use different apps, and technologies so that I can continue school virtually. This virtual school actually makes it a lot easier for me personally. I honestly prefer virtual learning, other than the fact that I don't see my friends. Since going virtual, it helps a lot with my pain, since I can sit at the comfort of my home without having to climb stairs or walk from and to different classes. Another helpful part of virtual learning for me is how I have so much flexibility to attend my physical therapy and laser therapy. This is mostly why I love taking part in virtual learning! as frustrating as it may be, the best this I can do is stay virtual to keep myself and everybody else safe". I think that having the option of virtual is a good option for a kid with a medical condition.

    Community Voices

    How I feel almost every damn day!

    <p>How I feel almost every damn day!</p>
    6 people are talking about this
    Community Voices

    Surgery again...

    <p>Surgery again...</p>
    Community Voices

    It’s been a weird day.

    So, I am not usually an emotionally sensitive person. I had an incredibly rough childhood and that made me strong but damaged and very guarded and I have always had a wall up. I have really struggled with ptsd and ocd since I was a kid which lead to me being an alcoholic and then two years ago I found out that I have Chiari Malformation type 1 and a tethered spinal cord. I require two or more surgeries to relieve my many painful symptoms. This has really broken me over and over again. I lost my career, I’ve lost some mobility, I haven’t even driven a car since last December. My memory has faded and my body trembles and moves on it’s own. I can’t afford the surgeries, and the thought of going through long periods of other people in charge of my life makes my head want to explode. But lately, I’ve been crying. Crying at silly things, even at lovely things. I have found myself missing things that used to make my days difficult. My pain has almost doubled in the past year and I don’t know if I’m accepting that I’m close to giving up, or if I have just gotten that much worse. I’m a year and 5 months without a drink, but honestly the constant migraine in my neck makes that easier than it’s ever been. Here’s to hoping I can find a way to fix this. #Depression #ObsessiveCompulsiveDisorder #PTSD #ChiariMalformation #TetheredSpinalCordSyndrome #Alcoholism #AnxietyAttacks

    3 people are talking about this
    Community Voices

    To the person who just doesn’t get it...

    <p>To the person who just doesn’t get it...</p>
    5 people are talking about this