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