Syringomyelia

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Syringomyelia
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    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    <p>Have you ever met anyone who lives with the same <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> as you? What was it like?</p>
    9 people are talking about this
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    Community Voices

    Syringomyelia Awareness

    <p><a href="https://themighty.com/topic/syringomyelia/?label=Syringomyelia" class="tm-embed-link  tm-autolink health-map" data-id="5b23cebe00553f33fe99d9f2" data-name="Syringomyelia" title="Syringomyelia" target="_blank">Syringomyelia</a> Awareness</p>
    2 people are talking about this
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    How long did it take you to get diagnosed with your rare disease?

    <p>How long did it take you to get diagnosed with your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    18 people are talking about this
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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

    5 people are talking about this
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    Community Voices

    What frustrates you most about living with a rare disease?

    <p>What frustrates you most about living with a <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    20 people are talking about this
    Community Voices

    I'm new here!

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

    #MightyTogether

    #Syringomyelia

    5 people are talking about this