Chiari I -19 years of pain 14 since surgery.
Posted , 4 users are following.
I remember going into the hospital at 5 years old but none of my recovery post surgery. I remember going in for an MRI one day and the doc told me I was fully recovered.
Now I'm 19. I was kept away from sports cause my mom didn't want issues. But I've still got some balance problems. I've had so many migraines I can function through them. I still get spots in my vision. I get fainting spells. In the last year it's all felt like it's gotten worse and I've developed scoliosis, a symptom I never had before.
Does anyone know if I'd need a second surgery?
I don't want to need another surgery. I want to be norm.
0 likes, 3 replies
ashlee1989 Toni133
Posted
Hi, I don't really have any answers for you I'm 27 I had my decompression aged 14 and even I don't remember everything my symptoms seemed to settle at around 17-18 but have now returned I too have scoliosis (severe) but have had this since teens too. I didn't want to just read and run. I too wish to be normal so you are not alone. It's hard! Have you been back to your GP or consultant??
john_54735 ashlee1989
Posted
I had decompression surgery end of November. At first I seemed to b recovering well. Had no numbness anymore and apart from the surgery pain was OK. Till last month it all started again l. And feels even worse now. The sickness and pain when straining is much worse. I had scans to c if it had returned bt so consultant said they all clear. Now I've been back to doctors 4times with no help or answers. They referred me to another neurologist bt the closest appointment isn't till 4months time. I'm really worry they are missing something as I'm almost passing out sometimes and don't think I can live with this for 4 months. Just don't knw where to turn anymore. Feel stuck limbo where no one seems to knw how to help or what is causing my symptoms to still be present
Jennyboo Toni133
Posted
It sounds like that is what you will need, I am no professional but I do understand what your dealing with as a parent of a child that is now 27 with her on children she had 2 surgery's as a child ages 5 &7 now we believe her shunt as stopped working correctly, she is almost parilzed lower extremity, and suffers extreme pain on a daily bases, also due to all the problem's she has had with her condition and having 2 children she now has a problem with pain pills. Please get your self checked it can get worse, my daughter is grown and doesn't want to go thru it again but I hope that one day she realizes she needs to before it completely ruins her and my grandkids life... Praying for you and your journey...