Syringomyelia

Community Voices

Nina @sparklywartanks

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>

6 people are talking about this

Community Voices

itsbecca @itsbecca

I’m new here!

Hi, my name is itsbecca. I'm here because I just feel I need to be proactive about my general well-being and need a community and support group.

#MightyTogether #Depression #Anxiety #PTSD #ChiariMalformation #Syringomyelia

2 people are talking about this

Community Voices

ChiariAustralia @chiariaustralia

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

Community Voices

Nina @sparklywartanks

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>

12 people are talking about this

Community Voices

Skapint @skapint

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

1 person is talking about this

Community Voices

Sydzmom_247 @sydzmom_247

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