Hi Kate, Very interesting! I was unaware that there could be link a between NF1 and scoliosis. Really hope that in time we can "end NF through research".
Hi Kate, great post. I have NF1 and scoliosis.. my spine is like an S. I had a fusion on the upper curvature when I was 8, but the vertebrae were too rigid to straighten so they just did the bone grafts, rod n plaster cast post surgery... no issues for 30ish years until I overstretched n twisted one day n broke the rod. My ortho is reluctant to operate due to the risks associated with the surgery.
Hello, thank you for watching Ask Kate and for sharing some of your story with us. The decision to pursue surgery is difficult and working with your medical team to make a plan that works for you is important!
This really fascinates me as I have NF and scoliosis. I do not have any tumours or fibromas on or near my spine. I have had 4 surgeries to correct and stabilize the curve. My curve is in my thoracic and cervical spine. What I find interesting, is that my paediatric orthopaedic surgeon told me that my NF was cause by thickening/bulges in my dural sac and that was what was pushing my spine into a curve. He said bracing to stop the curve was never going to be an option and that surgery was the only option. I had my first surgery when I was 8, my surgeon put a rod into the back of my spine. Likely, I bounced back very quickly and I didn’t need to wear a brace during the healing process. Unfortunately, the area above the fusion started to curve due to new thickening in the dural sac. I had my second surgery when I was 13. My surgeon took my old rod out and put a new one in higher up. I had to wear a brace to aid in the healing process. Unfortunately, shortly after, my surgeon said I would need another surgery to stabilize the front of my spine. When I was 15, my surgeon went in through the front of my body (chest spreaders and all). He put 6 mesh cages around 6 of my vertebrae. Again, I had to wear a brace to aid in the healing process. Fast forward to about 8-10 years later, I started to developer kyphosis at C4 C5, you guessed it, right above my prior fusion. I opted for surgery, even though my surgeon was concerned due to my complicated NF anatomy. My bones were so small and fragile that putting hardware in to replace the disintegrated disc wasn’t an option. So, he pulled the vertebrae a part and put a bone in from my hip. The bulge in my dural sac was so bad that they accidentally nicked it. My kyphosis was so bad that it was plastered against the back of my throat and they accidentally cut it. My scoliosis also pushed my arteries into a weird position, and they nicked that too. While trying to stop the bleeding, they irritated the nerves connected to C5, so I temporarily lost strength and weakness in my right arm. I did have to wear a halo brace after this surgery. So, to wrap up, it fascinates me how NF makes complex surgery 1000x more complex and dangerous.
Tara, thank you so much for sharing your experience here. It sounds like a very long and difficult journey that has required a lot of perseverance and a fighting spirit. This video is definitely just the tip of the iceberg in the world of how NF can impact your bone health. Thank you for watching Ask Kate!
While I don't want to scare anyone and everyone is affected differently II have both kyphosis scoliosis and NF1, I had multiple ( that many I have lost count) operations when I was a between 13-22 and Had to wear a halo brace easy time after the operation. I remember after my first operation I was told by an amazing surgeon I could have sneezed and broken my neck. Now I have full fusion and no movement at all in my neck. I have found ways to do almost everything everyone else does so try and lot left it to affect me day to day.
I was born with scoliosis and I got it from my NF1 when I was 6 my doctor was like “she need to have surgery or she’s gonna be in a wheelchair by the time she’s 12” I had my first surgery when I was 7 and my last one when I was 10 but I’ve i 5 surgery in total and 1 back brace after my first one Scoliosis still continues to affect my daily life I can’t do some things in PE I can’t lift really heavy things I have to deal with the pain a lot and a lot more things but I can do a lot and I’m happy just the way I am I have 2 titanium rods 18-19 screws (I forgot)
Such good information and easy to understand! Love these videos!
Hi Kate, Very interesting! I was unaware that there could be link a between NF1 and scoliosis. Really hope that in time we can "end NF through research".
Hi Kate, great post. I have NF1 and scoliosis.. my spine is like an S. I had a fusion on the upper curvature when I was 8, but the vertebrae were too rigid to straighten so they just did the bone grafts, rod n plaster cast post surgery... no issues for 30ish years until I overstretched n twisted one day n broke the rod. My ortho is reluctant to operate due to the risks associated with the surgery.
Hello, thank you for watching Ask Kate and for sharing some of your story with us. The decision to pursue surgery is difficult and working with your medical team to make a plan that works for you is important!
This really fascinates me as I have NF and scoliosis. I do not have any tumours or fibromas on or near my spine. I have had 4 surgeries to correct and stabilize the curve. My curve is in my thoracic and cervical spine. What I find interesting, is that my paediatric orthopaedic surgeon told me that my NF was cause by thickening/bulges in my dural sac and that was what was pushing my spine into a curve. He said bracing to stop the curve was never going to be an option and that surgery was the only option. I had my first surgery when I was 8, my surgeon put a rod into the back of my spine. Likely, I bounced back very quickly and I didn’t need to wear a brace during the healing process. Unfortunately, the area above the fusion started to curve due to new thickening in the dural sac. I had my second surgery when I was 13. My surgeon took my old rod out and put a new one in higher up. I had to wear a brace to aid in the healing process. Unfortunately, shortly after, my surgeon said I would need another surgery to stabilize the front of my spine. When I was 15, my surgeon went in through the front of my body (chest spreaders and all). He put 6 mesh cages around 6 of my vertebrae. Again, I had to wear a brace to aid in the healing process. Fast forward to about 8-10 years later, I started to developer kyphosis at C4 C5, you guessed it, right above my prior fusion. I opted for surgery, even though my surgeon was concerned due to my complicated NF anatomy. My bones were so small and fragile that putting hardware in to replace the disintegrated disc wasn’t an option. So, he pulled the vertebrae a part and put a bone in from my hip. The bulge in my dural sac was so bad that they accidentally nicked it. My kyphosis was so bad that it was plastered against the back of my throat and they accidentally cut it. My scoliosis also pushed my arteries into a weird position, and they nicked that too. While trying to stop the bleeding, they irritated the nerves connected to C5, so I temporarily lost strength and weakness in my right arm. I did have to wear a halo brace after this surgery.
So, to wrap up, it fascinates me how NF makes complex surgery 1000x more complex and dangerous.
Tara, thank you so much for sharing your experience here. It sounds like a very long and difficult journey that has required a lot of perseverance and a fighting spirit. This video is definitely just the tip of the iceberg in the world of how NF can impact your bone health. Thank you for watching Ask Kate!
While I don't want to scare anyone and everyone is affected differently II have both kyphosis scoliosis and NF1, I had multiple ( that many I have lost count) operations when I was a between 13-22 and Had to wear a halo brace easy time after the operation. I remember after my first operation I was told by an amazing surgeon I could have sneezed and broken my neck. Now I have full fusion and no movement at all in my neck. I have found ways to do almost everything everyone else does so try and lot left it to affect me day to day.
Thank you for watching and for sharing your story Paul, it sounds like you have been through a lot and overcome incredible obstacles in life.
I was born with scoliosis and I got it from my NF1 when I was 6 my doctor was like “she need to have surgery or she’s gonna be in a wheelchair by the time she’s 12”
I had my first surgery when I was 7 and my last one when I was 10 but I’ve i 5 surgery in total and 1 back brace after my first one
Scoliosis still continues to affect my daily life I can’t do some things in PE I can’t lift really heavy things I have to deal with the pain a lot and a lot more things but I can do a lot and I’m happy just the way I am
I have 2 titanium rods 18-19 screws (I forgot)
Hi Maddy, thank you for sharing some of your story with us and thank you for watching Ask Kate!
My daughter has a nf1 left tibia problem n now we find out scoliosis