Last summer at Jakeb's annual physical, we discovered that he has Scoliosis. It's actually called Adolescent Idiopathic Scoliosis but since it's been a long-time genetic family member of sorts we've always just called it Scoliosis while having fun with the real medical name, of course... :) If I'm right, my sister actually has what is called Roto Scoliosis where her spine is curved and twisted. We've could have some fun with that name too. Anyway, we went yesterday to our Dr. in Houston (Dr. Howard Epps, Fondren Orthopedic Group) for a check up for Tori and to begin to watch Jakeb's. A nurse yesterday called it "Scoli" so I think we're going to adopt that one now. It's just easier to say as if saying the whole word, Scoliosis, is just exhausting......
For the readers who don't know and haven't walked through the past 5-6 years with us, Tori has "Scoli" as well. She wore a body brace for around two years during her 6th and 7th grade and then had a major growth spurt that just made the brace completley ineffective. She had spinal fusion surgery in April of her 7th grade year. Her upper curve when we decided to go with the surgery was at 49 degrees which is the curve that is most crucial. She still had growing to do and we felt it would get worse and doing the surgery at that age was just better timing. Her corrected upper curve is at about 19 degrees and holding. She has a lower, compensatory curve that we've continued to watch and it appears that it will stay at about 37 degrees. She has just a bit of growing left which she is thrilled about (sarcastic! since she's already 5'8") and one more year of a check up and if nothing changes, she'll be good to go and will only have to go to the dr. if issues arise.
Jakeb on the other hand has a 30 degree upper curve along with the lower compensatory curve and some growing left to do. If he grows slowly, he has a chance of not getting much worse but a major growth spurt could make things worse quickly. We’ll go back in December of this year to check. He’s not worried about it at all and it causes no pain or anything. I have to say too that we are not quite as anxious about it either having been through it with Tori and see her living a normal life and having the opportunities to share her journey with others. Although it was not without its challenges, it has been an overall good experience for her.
We (Jakeb is included in the “we”) did choose to opt for surgery if the need arose and not go the brace route like we did with Tori. Wearing the brace was so uncomfortable and restricting and just caused all sorts of emotional issues for Tori and her parents that we just don’t want to do again. We also look back and see that the brace didn’t work for Tori, it didn’t work for my sister, there are a couple of other girls we know that it didn’t work for them so in our eyes, it just doesn’t have a very good track record to make it worth the issues that come along with it. Even Tori said that the surgery was much better than wearing the brace for two years. It's a tough call and we could "what if" this to death but we realize that we have to make a decision that we can live with and that would be the case of any family that is trying to decide what to do. The dr. said that if the curve stops anywhere in the 30’s or 40’s he would be fine without surgery but if it got much worse than that then we’d probably need the surgery as leaving it alone would cause long term problems with his internal organs. But for now, he lives life like any other normal 15 year old guy.
Well, that’s our “Scoli” update in a nutshell. Below are some images of their xrays. Obviously, Tori’s is the one with the rods and screws all in it. Her back is worth more than our house! I think they’re cool to look at and posting them here will help us document Jakeb’s journey, keep family and friends informed and possibly even help us share our experiences with someone else that might be going through it. That's why I titled this post like I did so perhaps if someone was searching the net for scoliosis info, they might find this and we're always happy to share our experiences if it will help relieve some fears and anxiety in parents or a child. And for the record, Jenny, I did ask permission to post these images as they are completely unclothed! They did have that wonderful hospital gown on, though. :)
For the readers who don't know and haven't walked through the past 5-6 years with us, Tori has "Scoli" as well. She wore a body brace for around two years during her 6th and 7th grade and then had a major growth spurt that just made the brace completley ineffective. She had spinal fusion surgery in April of her 7th grade year. Her upper curve when we decided to go with the surgery was at 49 degrees which is the curve that is most crucial. She still had growing to do and we felt it would get worse and doing the surgery at that age was just better timing. Her corrected upper curve is at about 19 degrees and holding. She has a lower, compensatory curve that we've continued to watch and it appears that it will stay at about 37 degrees. She has just a bit of growing left which she is thrilled about (sarcastic! since she's already 5'8") and one more year of a check up and if nothing changes, she'll be good to go and will only have to go to the dr. if issues arise.
Jakeb on the other hand has a 30 degree upper curve along with the lower compensatory curve and some growing left to do. If he grows slowly, he has a chance of not getting much worse but a major growth spurt could make things worse quickly. We’ll go back in December of this year to check. He’s not worried about it at all and it causes no pain or anything. I have to say too that we are not quite as anxious about it either having been through it with Tori and see her living a normal life and having the opportunities to share her journey with others. Although it was not without its challenges, it has been an overall good experience for her.
We (Jakeb is included in the “we”) did choose to opt for surgery if the need arose and not go the brace route like we did with Tori. Wearing the brace was so uncomfortable and restricting and just caused all sorts of emotional issues for Tori and her parents that we just don’t want to do again. We also look back and see that the brace didn’t work for Tori, it didn’t work for my sister, there are a couple of other girls we know that it didn’t work for them so in our eyes, it just doesn’t have a very good track record to make it worth the issues that come along with it. Even Tori said that the surgery was much better than wearing the brace for two years. It's a tough call and we could "what if" this to death but we realize that we have to make a decision that we can live with and that would be the case of any family that is trying to decide what to do. The dr. said that if the curve stops anywhere in the 30’s or 40’s he would be fine without surgery but if it got much worse than that then we’d probably need the surgery as leaving it alone would cause long term problems with his internal organs. But for now, he lives life like any other normal 15 year old guy.
Well, that’s our “Scoli” update in a nutshell. Below are some images of their xrays. Obviously, Tori’s is the one with the rods and screws all in it. Her back is worth more than our house! I think they’re cool to look at and posting them here will help us document Jakeb’s journey, keep family and friends informed and possibly even help us share our experiences with someone else that might be going through it. That's why I titled this post like I did so perhaps if someone was searching the net for scoliosis info, they might find this and we're always happy to share our experiences if it will help relieve some fears and anxiety in parents or a child. And for the record, Jenny, I did ask permission to post these images as they are completely unclothed! They did have that wonderful hospital gown on, though. :)
3 comments:
Gotta love a family filled with crappy genes! heehee
the correct term for my "scoli" is
Dual Curve Rotatoid Scoliosis or as I love to call it:
"Dumb Crooked Retarted Spine"! Works for me! heehee
Oops, sorry I got it wrong. I sure liked the roto rooter name better!
I think I like the roto rooter name too. If I ever got in a "bind" I could use the "snake" in my spine to clear it all up! heehee
Post a Comment