I am 59 with spina bifida. I was the first repair in the US. Thank you for the videos, I searched for years for a platform for adults with spina bifida.
I need to help my mom who has spina bifida. She doesn't live in the US, and it is expensive for her to travel. Is there a way to get a help online? She doesn't want to do surgery
My sister was born with her back open in 1976 and was not supposed to live past 6 hours. She also has Arnold Chiari malformation. She has had a very full life until her last shunt surgery 6 years ago. Her condition has gone downhill and she has been in the chair for about 10 years, but she is still going strong. God bless.
She must have type 3 chiari tons of surgeries involves if you have that type I have type 1 which they don’t really do anything for I also have tethered cord which is what cause the chiari, I have spina bifida and to top it all off MS there some horrible birth defects out there which docs could find better cures/fix’s etc... maybe one day
I wasn’t diagnosed with spina bifida till I was 37 I was in chronic pain from ages five they diagnosed me as type 1 but if the vertebrae had popped the other way instead of in, I would have been type 2 my life was horrid no doctor believed that hurt till I was 33 and on top of spina bifida I have adult tethered cord syndrome, chiari malformation type 1 and MS so far that we know of the last 7 years of my life I was bed bound due to pain but I finally had surgery last year I had an ACDF at C4-C5 and and then another fusion at L5-S1 the very next day it’s gotten rid of a fair amount of the pain I’m down from 150mcg fentanyl patch per 48, Oxycodone IR 30mg X 4 day, Opana IR 10mg X 4 day, I’m now only take 4 10mg oxycodone a day and my life has vastly improved for years docs told me I was perfectly fine I was *depressed and that was causing the pain* until I got in my 30’s and finally found a decent doc being an adult with non type 3 sucks especially if your like me and your really type 2 but because the vertebra is going into my body instead of out I’m 1 but I had all the symptoms of type 2 they say people can have type 1 there whole lives and never even know it well GL too you I don’t truly know what you had to go through but I bet you dealt with a ton of pain hopefully yours docs haven’t cut you off of you were on pain meds because of the bogus opioid epidemic that’s really only hurting the chronic pain patients
I am 59 with spina bifida. I was the first repair in the US. Thank you for the videos, I searched for years for a platform for adults with spina bifida.
Great job Jon!
I am a male aged 42 years old and was born with Spina Bifida. Have been married to a wonderful women for over 20 years.
I need to help my mom who has spina bifida. She doesn't live in the US, and it is expensive for her to travel. Is there a way to get a help online? She doesn't want to do surgery
My sister was born with her back open in 1976 and was not supposed to live past 6 hours. She also has Arnold Chiari malformation. She has had a very full life until her last shunt surgery 6 years ago. Her condition has gone downhill and she has been in the chair for about 10 years, but she is still going strong. God bless.
She must have type 3 chiari tons of surgeries involves if you have that type I have type 1 which they don’t really do anything for I also have tethered cord which is what cause the chiari, I have spina bifida and to top it all off MS there some horrible birth defects out there which docs could find better cures/fix’s etc... maybe one day
It’s not over until it’s over. Keep up the fight for what God cannot do does not exist.
Diagnoses (said "diagnose-eez). Don't despise meager beginnings, Jonathon. :)
Will it for God’s approval. Congratulations!
I wasn’t diagnosed with spina bifida till I was 37 I was in chronic pain from ages five they diagnosed me as type 1 but if the vertebrae had popped the other way instead of in, I would have been type 2 my life was horrid no doctor believed that hurt till I was 33 and on top of spina bifida I have adult tethered cord syndrome, chiari malformation type 1 and MS so far that we know of the last 7 years of my life I was bed bound due to pain but I finally had surgery last year I had an ACDF at C4-C5 and and then another fusion at L5-S1 the very next day it’s gotten rid of a fair amount of the pain I’m down from 150mcg fentanyl patch per 48, Oxycodone IR 30mg X 4 day, Opana IR 10mg X 4 day, I’m now only take 4 10mg oxycodone a day and my life has vastly improved for years docs told me I was perfectly fine I was *depressed and that was causing the pain* until I got in my 30’s and finally found a decent doc being an adult with non type 3 sucks especially if your like me and your really type 2 but because the vertebra is going into my body instead of out I’m 1 but I had all the symptoms of type 2 they say people can have type 1 there whole lives and never even know it well GL too you I don’t truly know what you had to go through but I bet you dealt with a ton of pain hopefully yours docs haven’t cut you off of you were on pain meds because of the bogus opioid epidemic that’s really only hurting the chronic pain patients
I just gave birth to my second daughter with spina bifida. Thanks for the encouragement and hope!!!
Hang in there!