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cystic fibrosis and scoliosis
- Thread starter Musicgirl
- Start date
TheSim1derful
New member
Hi there! I'm 21 with CF and I have mild scoliosis, but since I finished puberty before it could progress, my docs never considered surgery. However, my twin sister had very severe scoliosis when we were 16, and she got spinal fusion surgery. She had a pretty big "hump" on her back from her twisted ribcage and suffered from a lot of chest pain and discomfort. The surgery was pretty long and difficult, but she recovered really quickly (in about a month) and is now tall, pain-free and much happier. If you want I can talk to her and get her to answer any questions you might have. <img src="i/expressions/face-icon-small-smile.gif" border="0">
TheSim1derful
New member
Hi there! I'm 21 with CF and I have mild scoliosis, but since I finished puberty before it could progress, my docs never considered surgery. However, my twin sister had very severe scoliosis when we were 16, and she got spinal fusion surgery. She had a pretty big "hump" on her back from her twisted ribcage and suffered from a lot of chest pain and discomfort. The surgery was pretty long and difficult, but she recovered really quickly (in about a month) and is now tall, pain-free and much happier. If you want I can talk to her and get her to answer any questions you might have. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hiya,
Thanks so much for replying
I have 2 curves in my back ones 90 degrees and the other 60.
I'm lucky I don't have too many problems with my back, it gets a little sore but nothing major and isn't affecting me very much. The only thing I don't want to happen is for it to start affecting my lungs because with cf I wouldn't have the best pair haha! This is why doctors are considering surgery and I'm absouloutely terrified!!
I'm most worried about keeping me breathing during surgery because its so long <img src="i/expressions/face-icon-small-sad.gif" border="0"> your sister might know how they control your oxygen and everything I'm just scared I'll stop breathing!
Thanks so much <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks so much for replying
I have 2 curves in my back ones 90 degrees and the other 60.
I'm lucky I don't have too many problems with my back, it gets a little sore but nothing major and isn't affecting me very much. The only thing I don't want to happen is for it to start affecting my lungs because with cf I wouldn't have the best pair haha! This is why doctors are considering surgery and I'm absouloutely terrified!!
I'm most worried about keeping me breathing during surgery because its so long <img src="i/expressions/face-icon-small-sad.gif" border="0"> your sister might know how they control your oxygen and everything I'm just scared I'll stop breathing!
Thanks so much <img src="i/expressions/face-icon-small-happy.gif" border="0">
Hiya,
Thanks so much for replying
I have 2 curves in my back ones 90 degrees and the other 60.
I'm lucky I don't have too many problems with my back, it gets a little sore but nothing major and isn't affecting me very much. The only thing I don't want to happen is for it to start affecting my lungs because with cf I wouldn't have the best pair haha! This is why doctors are considering surgery and I'm absouloutely terrified!!
I'm most worried about keeping me breathing during surgery because its so long <img src="i/expressions/face-icon-small-sad.gif" border="0"> your sister might know how they control your oxygen and everything I'm just scared I'll stop breathing!
Thanks so much <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks so much for replying
I have 2 curves in my back ones 90 degrees and the other 60.
I'm lucky I don't have too many problems with my back, it gets a little sore but nothing major and isn't affecting me very much. The only thing I don't want to happen is for it to start affecting my lungs because with cf I wouldn't have the best pair haha! This is why doctors are considering surgery and I'm absouloutely terrified!!
I'm most worried about keeping me breathing during surgery because its so long <img src="i/expressions/face-icon-small-sad.gif" border="0"> your sister might know how they control your oxygen and everything I'm just scared I'll stop breathing!
Thanks so much <img src="i/expressions/face-icon-small-happy.gif" border="0">
You know my daughter is 15 and she has CF and Scoliosis and both back dr.'s have never said it was related to CF. So far she just has a back brace to see if that will straighten her hump out to alleviate the pain. It is working some when she will wear the thing. Luckily summer is coming so she can wear it more since she is too embarassed to wear it to school. So we will see. But she has pain constantly of about a 3 or 4 on the pain scale. She only has a slight curve to one side but her hump is more noticeable. And you know she has pains in her ribs sometimes I kind of wonder if that has to do with it also. But as far as surgery they dont suggest it yet since she is only 15. Maybe your case is more severe so that is why they want to do surgery. I wish you alot of luck and prayers sent too!
You know my daughter is 15 and she has CF and Scoliosis and both back dr.'s have never said it was related to CF. So far she just has a back brace to see if that will straighten her hump out to alleviate the pain. It is working some when she will wear the thing. Luckily summer is coming so she can wear it more since she is too embarassed to wear it to school. So we will see. But she has pain constantly of about a 3 or 4 on the pain scale. She only has a slight curve to one side but her hump is more noticeable. And you know she has pains in her ribs sometimes I kind of wonder if that has to do with it also. But as far as surgery they dont suggest it yet since she is only 15. Maybe your case is more severe so that is why they want to do surgery. I wish you alot of luck and prayers sent too!
MariposaNicole
New member
huh! I have that "hump" too and mild scoliosis, but never thought of it being CF related. who knew? I have occasional rib pain and pain in the upper back, but I've found that Hatha Yoga with a qualified teacher who has a good understanding of proper alignment helps.
MariposaNicole
New member
huh! I have that "hump" too and mild scoliosis, but never thought of it being CF related. who knew? I have occasional rib pain and pain in the upper back, but I've found that Hatha Yoga with a qualified teacher who has a good understanding of proper alignment helps.
Hi guys
Thanks for all the replies right now the doctors are in no hurry to do
surgery there just trying to gather information and find out the best thing to do <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ino I'm going to be so scared but if it has to be done it has to be done!
They said they could decide to leave it because I'm 16 and finished growing but not sure yet it could
go either way! I hardly have any pain which is weird for how bad it is and I stand really straight
It's just the hump I haaaaate it haha <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for all the replies right now the doctors are in no hurry to do
surgery there just trying to gather information and find out the best thing to do <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ino I'm going to be so scared but if it has to be done it has to be done!
They said they could decide to leave it because I'm 16 and finished growing but not sure yet it could
go either way! I hardly have any pain which is weird for how bad it is and I stand really straight
It's just the hump I haaaaate it haha <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi guys
Thanks for all the replies right now the doctors are in no hurry to do
surgery there just trying to gather information and find out the best thing to do <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ino I'm going to be so scared but if it has to be done it has to be done!
They said they could decide to leave it because I'm 16 and finished growing but not sure yet it could
go either way! I hardly have any pain which is weird for how bad it is and I stand really straight
It's just the hump I haaaaate it haha <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for all the replies right now the doctors are in no hurry to do
surgery there just trying to gather information and find out the best thing to do <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ino I'm going to be so scared but if it has to be done it has to be done!
They said they could decide to leave it because I'm 16 and finished growing but not sure yet it could
go either way! I hardly have any pain which is weird for how bad it is and I stand really straight
It's just the hump I haaaaate it haha <img src="i/expressions/face-icon-small-smile.gif" border="0">
My son had an 8 hour spine surgery to correct his hump -sherman's kyphosis. He was 3 inches taller right after the surgery, and grew more from there. He is glad he did it, but it was a hard recovery. He was 15 when he had the surgery. Well, he turned 16 in the rehab facility. It did make his breathing easier, but it took a year for his pft's to get back to what they were before surgery. They also told us it had nothing to do with cf, but I've run across so many people who have both that I lean toward a connection.
It's a tough decision to have to make. I wish you the best.
It's a tough decision to have to make. I wish you the best.
Hi JORDYSMOM,
Oh really! Glad he's doing well now <img src="i/expressions/face-icon-small-smile.gif" border="0">
The only thing I'd be so scared about is my breathing during the operation :/
Do you mind me asking What was your sons average pft's when he was having it done do u no?
Thanks for the reply <img src="i/expressions/face-icon-small-smile.gif" border="0">
Oh really! Glad he's doing well now <img src="i/expressions/face-icon-small-smile.gif" border="0">
The only thing I'd be so scared about is my breathing during the operation :/
Do you mind me asking What was your sons average pft's when he was having it done do u no?
Thanks for the reply <img src="i/expressions/face-icon-small-smile.gif" border="0">