Tethered Spinal Cord Syndrome

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Tethered Spinal Cord Syndrome
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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

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    I'm new here!

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

    #MightyTogether

    #TetheredSpinalCordSyndrome

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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

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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

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    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

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

    ”But you already had your surgery? Shouldn’t you be back to normal by now?”
    “I’m double jointed too.”
    “You look fine to me.”
    “Get better soon!”
    Your words hurt.
    But It’s ok.
    I am glad you may never have a true understanding of what it is like to live with my disease and it’s comorbidities.
    I wouldn’t wish it on my worst enemy.
    So, I forgive you.
    In my opinion, the ignorance you display is not reflective on you as a person but rather on society’s ill perception of chronic illness.
    It’s a systemic misconception.
    Society instills in us at an early age that If you don’t walk like a duck, and talk like a duck, then your not a duck.
    While we have improved immensely in expanding this belief system in the last few decades, there is still improvements to be made in our way of thinking.
    “Seeing is believing” is not applicable to chronic illness.
    NEWS FLASH:
    - Chronic illness is CHRONIC. We aren’t going to magically “get better soon.”
    -You don’t have to be in a wheel chair to have a disability.
    -Some people in wheel chairs can walk. That doesn’t mean they should and it certainly doesn’t mean they are “faking”.
    -You being double jointed is not the same as living with a connective tissue disease. Sorry.

    My disease is invisible but it’s not irrelevant.
    🦓❤️🧬
    #MightyPoets #EhlersDanlosSyndrome #EDSAwareness #ChronicIllness #ChiariMalformation #TetheredSpinalCordSyndrome #PosturalOrthostaticTachycardiaSyndrome #MCAS #MastCellActivationDisorder #MightyPoets

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    To the person who feels hopeless on their diagnosis journey.

    I see you.
    I have been you.
    I am sorry you feel lost.
    Not having a name to put to the thing that hinders your bodies ability to function is menacing.
    But don’t give up.
    It may not be today, or tomorrow, or this year,
    But if you are persistent and advocate for yourself,
    Someday you will meet the right doctor that will give you the diagnosis that you have been yearning and praying for.
    The diagnosis that makes everything else make sense.
    So just keep keepin’ on.
    Because I see you,
    Because I have been you,
    and because no one deserves to feel hopeless.
    The is light at the end of the diagnosis journey.
    ❤️🦓
    #MightyPoets #EhlersDanlosSyndrome #EhlersDanlosSociety #RareDisease #GeneticDisorder #LivingWithPOTS #RaynaudsPhenomenon #ChronicPain #Osteoarthritis
    #ChiariMalformation #ArnoldChiariMalformation #PosturalOrthostaticTachycardiaSyndrome #MCAS #MCAD #MastCellActivationDisorder #MastCellDisease #SpinaBifida #TetheredSpinalCordSyndrome #TetheredSpinalCord #rarediseaseawarenes #Dysautonomia #ChronicIllness #Spoonie

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    If my health condition could talk...

    If my Ehlers Danlos Syndrome could talk,
    I hardly think it’d have anything nice to say.
    My EDS may not speak to my mind but it certainly speaks to my body.
    If my EDS could talk I would beg, plead, and barter for relief from the pain, even just for a day.
    If my EDS could talk I would beckon the question “why me?”
    EDS is so many different things to so many people.
    No ones experience with EDS is the same as another’s.
    Through my eyes, EDS is something my family has struggled with for generations.
    It’s something that has taken friends and opportunities away from us,
    Something that plagues our bodies and genetics,
    Something that has put us in so many uncertain and scary situations,
    Something that doesn’t care if you would rather spend Christmas (or any holiday) at home rather than the hospital,
    Something that effects every single cell in our bodies.
    BUT,
    To me, EDS is also something that builds character.
    Because of my EDS, I am undeniably a better person.
    I am more appreciative of my health because I have seen parents walk out of the hospital with a teddy bear in memory of their child.
    I am more grateful for my family who are on this journey with me every day.
    I am more empathetic toward those who are struggling, whether it be mentally or physically, because I myself have hit many bumps in the road and know how hopeless life can feel when you are simply dealt the wrong cards.
    I am more positive because I have learned the hard way that when the going gets tough, when life is pitching curve ball after curve ball, choosing to respond with pessimism not only doesn’t change your situation but it pushes away the people you care about.
    If my EDS could talk...
    I pray it would listen first.
    I’d thank it for how strong I have become,
    I’d say that although it is apart of me it is not all I am,
    and that I’m not going down without a fight. ❤️🦓🧬

    #MightyPoets #MightyPoets #ifmyhealthconditioncouldtalk #NoOneFightsAlone #fighter #EDSAwareness #Spoonie #ChronicPain #zebrastrong #EhlersDanlosSyndrome #SpinaBifida #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #TetheredSpinalCordSyndrome #ChronicIllness #GeneticDisorders #EhlersDanlosSyndrome #Osteoarthritis EhlersDanlosNationalFoundation