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