I think that the internet is a useful tool to check on a diagnosis. Still, I was born almost 69 years ago with Spina Bifida Myelomeningocele. Back then doctors didn't have all the info that parents and children needed and a lot of my care and treatment was trial and error. Parents also learned from each other. I think that the internet is also full of misinformation, so one has to be careful and do lots of research like this mom did.❤❤
Also, medical books don't have everything in them either and if a patient has a rare disease, etc. it may or may not be in the medical books but it was highly unlikely mentioned in pre-med, medical, etc. A lot of healthcare professionals can go their whole career and not see some of the very rare diseases, etc.
That’s pretty cool that chatGPT helped lead this mom & child to a tangible diagnosis when multiple specialists couldn’t put their finger on the real issue. I don’t believe that it can be relied upon 100% on its own without input from a specialist, but surely it’s something to keep in mind when faced with a difficult case. That had to be such a relief when this mom finally got answers to such perplexing & troubling symptoms!
Oh my God, as a mother of five and six-year-old this would be my most biggest fear in life my greatest fear and I can't even imagine and I don't even want to.
Oh my God. My son has all of those symptoms. He had 24 teeth removed from grinding. He has a clubfoot that developed recently. He has emergency surgery to remove tonsils and adenoids bc of sleep apena. I'm calling his doctor tomorrow. He's medically complex and no one is helping me. It's so frustrating. 😢
I suspect my 10yo has tethered cord but the MRI said it was wasn’t conclusive 🤬 My kiddo was running around a couple of years ago and now cannot bear weight to walk. She also developed severe scoliosis-shooting to a 56 degree curve. It’s insane. She is scheduled for surgery in February. Will they be able to see if she has tethered cord? Is it possible for them to see any other issues that could be at play?
I was 8 when I finally got my tethered cord diagnosis. I still wasn’t fully potty trained because I couldn’t feel when I had to pee. My urologist (bc I had a lot of UTIs) finally sent me to a neurosurgeon. I contracted bacterial meningitis after my surgery though. Luckily, the only lasting effect (that I know of) from the meningitis is memory issues and my eyesight is shit. But I kept my fingers and toes so 🤷🏻♀️
This reminds me of my journey to diagnosis - about 30 visits to specialists, if not more, and none of them even suggested the spine as the source of the symptoms, not to even mention tethered cord syndrome. Complete ignorance, lack of knowledge, and attributing everything to anxiety. I received my diagnosis through my own research on the internet, and I scheduled the MRI that revealed the TCS myself. Waste of money and time, I hope AI will replace these ignorant people.
I think that the internet is a useful tool to check on a diagnosis. Still, I was born almost 69 years ago with Spina Bifida Myelomeningocele. Back then doctors didn't have all the info that parents and children needed and a lot of my care and treatment was trial and error. Parents also learned from each other. I think that the internet is also full of misinformation, so one has to be careful and do lots of research like this mom did.❤❤
Also, medical books don't have everything in them either and if a patient has a rare disease, etc. it may or may not be in the medical books but it was highly unlikely mentioned in pre-med, medical, etc. A lot of healthcare professionals can go their whole career and not see some of the very rare diseases, etc.
That’s pretty cool that chatGPT helped lead this mom & child to a tangible diagnosis when multiple specialists couldn’t put their finger on the real issue. I don’t believe that it can be relied upon 100% on its own without input from a specialist, but surely it’s something to keep in mind when faced with a difficult case. That had to be such a relief when this mom finally got answers to such perplexing & troubling symptoms!
I am glad the story ended well for Alex.
I used to water walk at the YMCA with a lady with tethered chord syndrome. She had the surgery well into adulthood.
Oh my God, as a mother of five and six-year-old this would be my most biggest fear in life my greatest fear and I can't even imagine and I don't even want to.
Oh my God. My son has all of those symptoms. He had 24 teeth removed from grinding. He has a clubfoot that developed recently. He has emergency surgery to remove tonsils and adenoids bc of sleep apena. I'm calling his doctor tomorrow. He's medically complex and no one is helping me. It's so frustrating. 😢
Hello, how is your son doing right now? I have tethered cord syndrome too.
I got tethered cord surgery I believe at 2 years old(im probably wrong but sometime when I was super young).
I suspect my 10yo has tethered cord but the MRI said it was wasn’t conclusive 🤬
My kiddo was running around a couple of years ago and now cannot bear weight to walk. She also developed severe scoliosis-shooting to a 56 degree curve. It’s insane. She is scheduled for surgery in February. Will they be able to see if she has tethered cord? Is it possible for them to see any other issues that could be at play?
I would present my case Im tired of walking with this limp my back is messed up
I was 8 when I finally got my tethered cord diagnosis. I still wasn’t fully potty trained because I couldn’t feel when I had to pee. My urologist (bc I had a lot of UTIs) finally sent me to a neurosurgeon. I contracted bacterial meningitis after my surgery though. Luckily, the only lasting effect (that I know of) from the meningitis is memory issues and my eyesight is shit. But I kept my fingers and toes so 🤷🏻♀️
This reminds me of my journey to diagnosis - about 30 visits to specialists, if not more, and none of them even suggested the spine as the source of the symptoms, not to even mention tethered cord syndrome. Complete ignorance, lack of knowledge, and attributing everything to anxiety. I received my diagnosis through my own research on the internet, and I scheduled the MRI that revealed the TCS myself. Waste of money and time, I hope AI will replace these ignorant people.
I see it no different than hospitals and doctors using IBMs Watson and then if doctor's and hospitals have access to supercomputers and using them.