Syringomyelia

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Syringomyelia
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    Syringomyelia Awareness

    May is #Syringomyelia Awareness month. I’ve probably had it since I was 12 when I woke up and had lost feeling on my right side, but it wasn’t till I was 18 that someone finally agreed to give me an MRI. The doctor at the time was so perplexed he redid all my neurological scans as he couldn’t believe how well I was compared to how bad my spine was.

    Syringomyelia is a neurological condition where a fluid-filled cavity (syrinx) occurs in the spinal cord. They don’t quite know why but it’s very common in conditions like Chiari Malformation (which I have), Tethered Cord (I also have), trauma to the spinal cord and a few other things. These cysts expand and put pressure on the nerves running in our spine causing pain mainly in peripheral areas. It can lead to paralysis but chances of this are getting less with increased knowledge. Mine was so big C2-T10 and the width of my cord in most areas it stretched the cord and perforated it in areas. So I’m lucky to be walking and only part-time wheelchair user.

    I had the Chiari decompression surgery to help both my Chiari 1.0.0.5 and Syringomyelia. However, it took another surgery for my Syrinx to diminish a lot and the nerve damage is permanent. Which includes a lot of pain which I needed a surgically implanted medical pump which sends medication like morphine to the area around my spinal cord. Sadly some doctors don’t recognise this can be a very painful condition so not everyone is as lucky as me. Interestingly animals can get this too - especially Cavalier King Charles Spaniels and no one doubts their pain. In fact some countries are banning them being bred because so many have it the risk is too high and it’s considered cruel to breed them knowing the pain and neurological problems that do occur.

    During May we wear blue to do with our awareness ribbon (blue ribbon with a little drop of CSF). It’s a rare condition with around 8.0.0.4 per 100,000 people having it. So many people are not aware of this very invisible condition. So I am hoping sharing my story and a brief overview of the condition will help people learn it’s name.

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    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

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    I'm new here!

    Hi, my name is Skapint. I’m new to The Mighty and look forward to sharing my story. I’m 70, living with Syringomyelia since 2005, 3 laminectomy operations to insert/change shunts, only overt symptoms of neuropathy below waist since 2018. Can still stand for a short period, walk about 10 paces but use wheelchair. Please make yourself aware of the seriousness of Syringomyelia. If I had listened to my neurosurgeon back in 2005 and continued to have MRIs every 2 years we would have known the first shunt had fallen out. We don’t know when it vanished but the syrinx kept growing until it affected nerves from T11-L5, from waist down. I became complacent, not realising the consequences I now suffer. My wonderful surgeon has been with me throughout and works with another surgeon who is Australia’s expert on Chiari/Syringomyelia. To be fair regarding my lack of action, a lot more study has resulted in more knowledge in the last 15 years. Boy if I knew then what I know now, I wouldn’t be throwing around 15 kilo boxes Willy-nilly! Keep educating yourself and persist in looking for good medical help. Best wishes to all.

    PS- re pain - heat, ibuprofen and CBD oil (not activated) works for me.

    #MightyTogether

    #Syringomyelia

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    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

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    I’m new here!

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

    #MightyTogether #ChiariMalformation #Syringomyelia

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    What frustrates you most about living with a rare disease?

    It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

    Let me know in the comments below 💌

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

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    I'm new here!

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

    #MightyTogether

    #Syringomyelia

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    I'm new here!

    Hi, my name is Snoozysuz. I have 4 children and Chiari and syringomyelia.

    #MightyTogether

    #ChiariMalformation

    #Syringomyelia

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    I'm new here!

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

    #MightyTogether #ADHD #Migraine #Anxiety #EhlersDanlosSyndrome #Syringohydromyelia #Syringomyelia #ChronicDailyHeadache