Hello Bea I just looked at my message -- sorry it is so long.
Have you read the book Stopping Scoliosis? It is very informative about surgery and etc. but I am sure your meeting with Dr. Tredwell will give you lots of information. My email is mammelc@imag.net
Hello Bea and it is nice to hear from you! It is really nice to hear from someone who is so close by and who is sharing the same dr. and experience. My husband works in the States these days, so we have US coverage for surgeons down there, and so we have been to see a few... there is quite a range of opinions on just when to do surgery. After having done a lot of research and in view of our daughter's situation, we feel surgery would be the best option. Dr Tredwell says that there are other surgeons who would agree with us, but he doesn't do surgery until 55*no matter what. Leah also needs thoracoplasty which DR. Tredwell does routinely, but which not all surgeons are trained for. But at our last meeting he basically told Leah to learn to live with it, or go find someone else.
Ashley, I haven't heard from you for a while...how are things with you?
I am so glad, Bea, that your daughter has no pain! Because if my Leah didn't have any, I wouldn't be in such a hurry to get her into surgery. But she has had to stop running and cannot do many of her other athletic activities. And she can't get a full night's sleep! All I have to do is think back to my days of being pregnant and how chronically tired and uncomfortable I was to be able to relate to that. Dr. Tredwell has recommended rowing and there is a rowing club out here that I have checked into. Wrestling sounds like a great sport by the way, and I am wondering if your Leah has an incredibly fit torso from the wrestling and that is what is preventing Pain?
My family have spent alot of time recommending alternatives -- they can be very anti-medical intervention -- and Dr. Tredwell does not leap into surgery, so I have spent alot of time looking at alternatives, and I think that the exercise route is a great way to deal with pain before and after and wonderful with lesser curves (also bracing) but everything I have researched generally comes back to one thing: if you wait too long and the curve progresses too much, you may never get the correction you would have achieved with an earlier surgical intervention.
And quite honestly, Dr. Tredwell may stick to his guns and still refuse to treat Leah after our chat on March 1 (although we have a tentative surgery date for July ) but I would rather have him do it than go down to Seattle, since he does do state of the art stuff. so if he has recommended surgery, I think you are in the best position possible for your Leah's condition, if you can say there is any bright spot in her situation. How is she feeling about all this? She seems very active and is she at all worried at the prospect of having to take a year to get back to her present level of fitness? Does she notice her own scoliosis?
Because our Leah is so fed up with the pain and restriction and lack of sleep that she is ready to do anything even stay flat on her back for six months just to make things better. But a year ago if she had been told to do that, I don't think she would have handled it very well.
I have spent alot of time on the adult forae which is very illuminating, because I know that this condition is a lifetime thing with no quick fix, and those people have alot of recommendations for dealing with the chronic pain, dealing with the disk failure that occurs in a percentage of the population years after surgery, and dealing with any complications which may pop up 20 years down the road. A recommendation that pops up over and over is Pilates which is simply targeted strength training. And Yoga --loads of stretching and core strength.
And there is a physio clinic in San Diego that has conducted studies showing that targeted weight training and aerobic activity can do wonders for muscle strength imabalances resulting from the scoliosis(although I find their claims that their program decreases curves to be somewhat suspect as many of the lesser curves will go away on their own....but under 30* they had fair success. I will paste their link in)http://www.spineandsport.com/
My feeling with our Leah is that even if she doesn't get any worse, she will be better off with surgery even if the pain does not go away completely (and this is barring any complications, of course) and there are studies pulished on Entrez-NLM that support this... a link to the online library is below. A study published in 2003 by AJ Danielsson showed that although scoliosis patients showed a higher incidence of back pain 23 years after treatment than did people with no scoliosis, (25%) there was no more pain in the surgical patients than in the non-surgical patients. My concern was does the surgery cause trouble down the road? But it seems that if there is trouble down the road it is from the scoliosis itself rather than any surgical intervention. ... http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=PubMed
Does your Leah have any torsion? Ours is getting a noticeable dowager's hump and rib bump, and her breathing is being compromised.
And does your Leah have one long curve, or an s-curve? Leah's is King curve type II right thoracic upper 45* and lumbar compensatory 40* to the left (fairly common) which, as Dr. Tredwell states responds the most poorly to surgical intervention (only 48% of patients being 100% satisfied after surgery, but 100% --barring complications-- feeling better after surgery than before)
The groups with mainly lumbar or one long curve (thoracolumbar) seemed to have the highest satisfaction with results.
I look forward to keeping in touch and I promise not to be so long-winded all the time.
Carol
Have you read the book Stopping Scoliosis? It is very informative about surgery and etc. but I am sure your meeting with Dr. Tredwell will give you lots of information. My email is mammelc@imag.net
Hello Bea and it is nice to hear from you! It is really nice to hear from someone who is so close by and who is sharing the same dr. and experience. My husband works in the States these days, so we have US coverage for surgeons down there, and so we have been to see a few... there is quite a range of opinions on just when to do surgery. After having done a lot of research and in view of our daughter's situation, we feel surgery would be the best option. Dr Tredwell says that there are other surgeons who would agree with us, but he doesn't do surgery until 55*no matter what. Leah also needs thoracoplasty which DR. Tredwell does routinely, but which not all surgeons are trained for. But at our last meeting he basically told Leah to learn to live with it, or go find someone else.
Ashley, I haven't heard from you for a while...how are things with you?
I am so glad, Bea, that your daughter has no pain! Because if my Leah didn't have any, I wouldn't be in such a hurry to get her into surgery. But she has had to stop running and cannot do many of her other athletic activities. And she can't get a full night's sleep! All I have to do is think back to my days of being pregnant and how chronically tired and uncomfortable I was to be able to relate to that. Dr. Tredwell has recommended rowing and there is a rowing club out here that I have checked into. Wrestling sounds like a great sport by the way, and I am wondering if your Leah has an incredibly fit torso from the wrestling and that is what is preventing Pain?
My family have spent alot of time recommending alternatives -- they can be very anti-medical intervention -- and Dr. Tredwell does not leap into surgery, so I have spent alot of time looking at alternatives, and I think that the exercise route is a great way to deal with pain before and after and wonderful with lesser curves (also bracing) but everything I have researched generally comes back to one thing: if you wait too long and the curve progresses too much, you may never get the correction you would have achieved with an earlier surgical intervention.
And quite honestly, Dr. Tredwell may stick to his guns and still refuse to treat Leah after our chat on March 1 (although we have a tentative surgery date for July ) but I would rather have him do it than go down to Seattle, since he does do state of the art stuff. so if he has recommended surgery, I think you are in the best position possible for your Leah's condition, if you can say there is any bright spot in her situation. How is she feeling about all this? She seems very active and is she at all worried at the prospect of having to take a year to get back to her present level of fitness? Does she notice her own scoliosis?
Because our Leah is so fed up with the pain and restriction and lack of sleep that she is ready to do anything even stay flat on her back for six months just to make things better. But a year ago if she had been told to do that, I don't think she would have handled it very well.
I have spent alot of time on the adult forae which is very illuminating, because I know that this condition is a lifetime thing with no quick fix, and those people have alot of recommendations for dealing with the chronic pain, dealing with the disk failure that occurs in a percentage of the population years after surgery, and dealing with any complications which may pop up 20 years down the road. A recommendation that pops up over and over is Pilates which is simply targeted strength training. And Yoga --loads of stretching and core strength.
And there is a physio clinic in San Diego that has conducted studies showing that targeted weight training and aerobic activity can do wonders for muscle strength imabalances resulting from the scoliosis(although I find their claims that their program decreases curves to be somewhat suspect as many of the lesser curves will go away on their own....but under 30* they had fair success. I will paste their link in)http://www.spineandsport.com/
My feeling with our Leah is that even if she doesn't get any worse, she will be better off with surgery even if the pain does not go away completely (and this is barring any complications, of course) and there are studies pulished on Entrez-NLM that support this... a link to the online library is below. A study published in 2003 by AJ Danielsson showed that although scoliosis patients showed a higher incidence of back pain 23 years after treatment than did people with no scoliosis, (25%) there was no more pain in the surgical patients than in the non-surgical patients. My concern was does the surgery cause trouble down the road? But it seems that if there is trouble down the road it is from the scoliosis itself rather than any surgical intervention. ... http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=PubMed
Does your Leah have any torsion? Ours is getting a noticeable dowager's hump and rib bump, and her breathing is being compromised.
And does your Leah have one long curve, or an s-curve? Leah's is King curve type II right thoracic upper 45* and lumbar compensatory 40* to the left (fairly common) which, as Dr. Tredwell states responds the most poorly to surgical intervention (only 48% of patients being 100% satisfied after surgery, but 100% --barring complications-- feeling better after surgery than before)
The groups with mainly lumbar or one long curve (thoracolumbar) seemed to have the highest satisfaction with results.
I look forward to keeping in touch and I promise not to be so long-winded all the time.
Carol
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