Tethered Spinal Cord Syndrome

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Tethered Spinal Cord Syndrome
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    I’m new here!

    Hi, my name is victorymightylovable. I'm here because
    I'm tired of trying to explain to people my diagnoses and how they affect me, even though I look all right.
    #MightyTogether #Anxiety #Depression #Migraine #TetheredSpinalCordSyndrome

    15 reactions 3 comments
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    1 Week Post-op #EhlersDanlosSyndrome

    #TetheredSpinalCordSyndrome
    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 comments
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    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

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    newbie here 👋 #EhlersDanlosSyndrome #TetheredSpinalCordSyndrome #MastCellActivationDisorder #Dysautonomia

    heyo- just putting myself out here !
    hopefully I can meet some others with similar conditions (^:
    looking forward 2 reading y'alls stories

    Post

    I'm new here!

    Hi, my name is almondsandmilk. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #TetheredSpinalCordSyndrome

    3 comments
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    Back to school #Parenting #TetheredSpinalCordSyndrome

    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.

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    How I feel almost every damn day!

    I really wish I had friends and family who understood what I was going through, or at least tried to understand. Living with Chronic pain isn’t living, well, at least for me it’s not. I feel like a burden and my family and friends don’t really care to listen. They don’t see me crying all the time. If I talk about how I really feel it’s stop ✋🏻 you shouldn’t talk this way. 😢😢
    #TetheredSpinalCordSyndrome #FeelingAlone #Depression

    6 comments
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    Surgery again...

    So I have #HEDS and #PosturalOrthostaticTachycardiaSyndrome. I will be having Ankle surgery this upcoming January and it will mark my third surgery in three years.
    I feel like I am experiencing some PTSD from my last surgery #TetheredSpinalCordSyndrome it caused damage to my bladder. the recovery was painful and I am still dealing with issues. I was so depressed from this surgery.
    now the fact that I have to have surgery on my Ankle has me feeling all kinds of emotions. mostly depressed.
    #EhlersDanlosSyndrome
    #EDS
    #ChronicIllnessEDS
    #HypermobileTypeEDS
    #LivingWithPOTS