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Second opinion today-Good News-Chris43

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  • Second opinion today-Good News-Chris43

    Hi Everyone,
    I posted my story "Daughter just diagnosed- Help!" a few weeks ago. So many kind people responded and gave me very helpful information. I really appreciated all of the info. I thought you might like an update. I took my daughter for a second opinion today and got some really good news! I had originally questioned the way my daughter was standing for one of her x-rays. I was right to question this. The two doctors that I saw today agreed that they did not think it was an acurate x-ray. I also had the very first x-ray that was taken at my local doctor's office with me. These two doctors looked at both x-rays, all of the other doctor's notes, gave my daughter a check , and used the scoliometer on her back. She has been wearing the Boston Brace 22 hours a day since June. They both agreed that my daughter's curvatures are in the 30's NOT the 40's, as I was told by the last doctor. We were originally told by my local orthopedic doctor that her curves were 31 and 33, but when we were sent to the hospital the surgeon told me they were 41 and 48 and we were looking at surgery.He felt progression was a guarentee. He agreed to "try" bracing, but gave us very little hope. Today we were given much hope. These two doctors said she absolutely was within the 30 degree range. We should not be thinking about surgery at all yet. They said her brace was very effective and we should continue doing what we are doing. They said she is probably looking at two years in the brace to hold it in the 30's. They said statistically speaking to brace a child in the 30's is much more successful than bracing a child in the 40's and they believe my daughter is in the 30's!!! YEAH!!! This is a very reputable surgeon, and his collegue, that did the exam today. He is the Chief of Pediatric Orthopedic Surgery at Mass. General Hopital in Boston. He believes there was a problem with the x-ray taken at Children's Hospital in Boston and that's why I had conflicting information. He said statistically speaking most curves that are held in the 30's throughout adolescence, will not continue to progress as these children become adults. I'm still wary of this, especially after checking out some of the posts on the adult forum. He also made sure I understood that at any time my daughter's curves could still progress and she may need the surgery. But bracing at 30 gives her more hope than bracing at 40. That's what we were hoping for. I have an appointment back at Children's with her actual surgeon next week, so we'll see how he feels about the second opinion that I got. My daughter will have her first in-brace x-ray and then out-of-brace x-ray next Tues. I'm going to make sure I have an experienced X-ray technichian this time and not a student!!! I am so happy today! My daughter is too! She jumped off the table and started dancing around the room when he said she was only in the 30's. It was so funny! She was so cute! She is very, very happy! I know we still have a long way to go, but today was a happy day and we really needed it.I know everyone on this forum needs to hear some happy news once in a while. I love to read all of your successful surgical and non-surgical stories. Thank you so much for sharing them with me. It helped me get through these last few weeks of indecision. I feel like I've been given the gift of time to see what happens with the bracing and to make a decision about the Schroth program. I'm still thinking this may be useful for my daughter in the future to learn how to make her muscles become the brace once she is actually out of the brace. I did ask the doctor about this program and he did say it can't hurt. He didn't say it would help, but he actually said it would not hurt. So I have time to think about this anyway. I'll fill you in next week, when I go back to my daughter's surgeon for the x-rays and check-up. I'm not going to mention the second opinion I got until I have heard all of what her doctor has to say. I don't want to upset him. I hope he re-checks those x-rays and agrees though. I'll probably be even more confused next week. Then I'll get another opinion I guess. This is like a never ending roller coaster! I'm on top of the world right now though, so I hope we can stay here for a while. Thanks again for all of your support!
    Chris

  • #2
    I'm glad to hear that her curves aren't as bad as previously thought.

    Hopefully the brace will work to hold the curves in her case. As long as she isn't in pain and the curves do not progress a lot, this would appear to be your best option.
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

    Comment


    • #3
      Originally posted by Chris43 View Post
      They both agreed that my daughter's curvatures are in the 30's NOT the 40's, as I was told by the last doctor.
      /
      /
      This is a very reputable surgeon, and his collegue, that did the exam today. He is the Chief of Pediatric Orthopedic Surgery at Mass. General Hopital in Boston. He believes there was a problem with the x-ray taken at Children's Hospital in Boston and that's why I had conflicting information. He said statistically speaking most curves that are held in the 30's throughout adolescence, will not continue to progress as these children become adults. I'm still wary of this, especially after checking out some of the posts on the adult forum.
      Hi Chris,

      What wonderful news! I'm so happy for you and your daughter!

      I'm so glad to hear that the Chief of Pediatric Orthopedic Surgery at Mass. General believes that most curves that are held in the thirties will not continue to progress in adulthood. Thank you so much for relaying that information to us!

      Kudos to your daughter for wearing her brace so well, it is obviously very important for her to keep it up! What great news for you both to celebrate!

      Comment


      • #4
        That's great news! I can imagine the relief you felt when you heard the numbers.

        Take care and hopefully, we'll play nicely on this thread.

        Comment


        • #5
          Hi everyone,
          I’ve been trying to post a reply for about three weeks now. I kept losing my posts into computer limbo. I got so frustrated with my computer. I wanted to throw the thing out the window!
          Well after my great news at Mass. General (this surgeon thinking my daughter was only in the 30 degree range, not the 40 degree range for her curves), I went back to my surgeon at Children’s Hospital in Boston. He insisted that she still had quite a severe curvature (T41 and L46).He said I could have the same x-ray checked by 10 different doctors and I would get 10 different measurements. He actually took her x-ray to the next room and asked another surgeon to measure it and he came out with T38 and L43. He said the bottom line was that we all agree to bracing her with the Boston brace until she shows any kind of progression. We were not able to get an x-ray that day because apparently my daughter’s first brace was too loose and not long enough for her. She was measured for a new Boston brace that day and we were told to come back in a week to get it and have an x-ray then. My daughter had only been in the Boston brace for two months and she already needed another one. Has anyone else had this experience? When we went back a week later for the new brace, my daughter hated the new one right away. This one hurts her a lot more than the other one did. She has now had it for three days and she keeps taking this one off saying that she can’t take the pain. Two months ago when she had her first brace, she got used to it much quicker. She was also weaned into it differently. She added hours when she first started. This time they told her to do the whole 22 hours a day, but just don’t pull it too tight for the first two weeks. We are hardly pulling the straps at all and she can’t stand it. I don’t know what to do. When my daughter had the x-rays done in this new brace, they pulled it very tight. She was actually crying during the x-ray. The x-ray showed a 75% correction. We couldn’t believe our eyes. Her spine looked almost perfectly straight in this brace. Even the Dr. was surprised. He said he was hoping for a 50% correction in-brace. He also said that with the rare occasion of a 75% correction, we could actually hope for a reduction in her curves. After hearing and seeing this, I really want her in this brace. But it is really bothering her. I don’t know if I should wait the two weeks and then have them check the brace again if she still is having trouble. She was so good about the last brace, I feel like there may be something wrong with this one. But it got such a good correction, I’m afraid we may jeopardize that. Has anyone else had this problem? How do I know when it’s too much pain? Keep in mind my daughter never had any back pain to begin with. I’m not really sure what to do. Any suggestions out there?
          I feel like we are lucky to have the surgery taken off the table, but I am still worried about progression as an adult. I was reading one of the posts that was talking about progression after pregnancy. I know I’m getting ahead of myself as my daughter is only 14. But it is a concern. Right now we are looking at bracing for about two years. What happens after that? Do most curves never progress? I was told that curves in the 30’s usually do not progress in adulthood. I have been trying to read as much as possible about scoliosis. The studies seem to think that once these kids make it through adolescence they will hold the curves. Most will not progress. Looking on this forum makes me question this. Don’t get me wrong, I’m so glad we don’t have to have the surgery now, but I don’t want my daughter to end up with it as an adult either. I’m just curious to see if there are a lot of people who have just braced during adolescence and gone through adulthood without a problem? I suppose those people wouldn’t need this forum though. They have probably just moved on with their lives. So I guess there is no way of knowing for sure. What a terrible disease! These kids have to live day by day, appointment to appointment! I really wish that more could be done! Sorry I’m carrying on so much! Thanks Brooke for the suggestion of writing on word and then posting. I hope this makes it through this time!
          Chris

          Comment


          • #6
            Hi Chris,

            I would call the orthotist immediately. That is the person who measured and possibly made the brace for your daughter. They should be able to help you, including finding out if there are pieces of plastic that are rubbing or poking and need to be cut down, etc. Call immediately so you can get in to see the orthotist quickly.

            Here's a link that you can read from UC San Francisco Children's Hospital that I posted the other day that might give you some relief for your other questions.

            http://www.scoliosis.org/forum/showthread.php?t=11014

            Also realize that adults undergoing surgery if they happen to have progressed over time still have really good results for the most part. There is a thread going on right now talking about a study. Take a peek at it. http://www.scoliosis.org/forum/showthread.php?t=11019

            If you eventually decide that your daughter can't tolerate the brace and you want to have surgery while she's young, I'm sure you could probably find a surgeon to operate with the curves as reported. I think forty degrees is when they start thinking about surgery if the child is still growing.

            Good luck, I hope you are successful getting the orthotist to help with the brace!
            Last edited by Ballet Mom; 08-13-2010, 08:17 PM.

            Comment


            • #7
              Originally posted by Chris43 View Post
              He said I could have the same x-ray checked by 10 different doctors and I would get 10 different measurements
              Chris, I cannot believe that a surgeon said this. Surely he never understand nothing about Maths, something frequent in doctors.
              The only way that could be true is that the measures would be performed by at least 9 inept surgeons.
              The margin error could not be greater than 2º. I obtained exactly the same number as the surgeon in the x-rays of my daughter. I think you should to learn how to measure the Cobb angle. It's ONLY a geometry matter, medicine has nothing to do. Maths is an exact science, there's not place to debates.
              In fact, medicine only has to do in the definition of criteria about the selection of vertebras. At least in my country there are two REALLY VERY DIFFERENT criterias. One (giving the worst number) says that the vertebras are the most inclined in the curve and the other selects the vertebras of the extremes. You should to be sure which is the criteria followed by the surgeon and which is the right criteria. It should to exist something like an 'official' site with the right definitions that should to be taken into account by surgeons. Medicine could not to be so informal. We should try to find it.

              We'll remain in contact

              Comment


              • #8
                Still concerned about numbers

                Hi Balletmom,
                Thank you so much for sending me those links. I was fascinated by them. I was a little depressed after seeing how many people seem to feel that they are the “exception” to the studies that have gone on. This is my concern.
                The Head of Pediatric Orthopedic surgery at Mass. General told me that if my daughter’s curves were in the 30 degree range and the brace was effective, that we shouldn’t have to worry about progression in adulthood. He said studies have shown that most will remain stable. My problem or concern is that I really don’t know what the actual numbers are for my daughter. I have been given numbers that are close to a 20 degree difference.

                Fernando-It’s nice to talk to you again! This is where you come in. I thought the same thing-that this is a math problem and I should be getting the same numbers, or at least close numbers from all doctors. I’ve tried to measure my daughter’s curves myself, but I can’t understand how they decide which vertebrae to measure from. To me they almost all look crooked. Here is the list of different numbers I’ve been given:

                Original X-ray read by radiologist at local doctor’s office:
                T27 and L28
                Orthopedic doctor at local doctor’s office-reading the same x-ray: T31 and L33
                Children’s Hospital Boston-new x-ray (three weeks later) read by our orthopedic surgeon: T41 and L46
                Second Opinion-Mass. General Hospital-Both x-rays looked at by the Chief of Pediatric Orthopedic surgery:
                T30 and L31
                Another surgeon at Children’s Hospital: T38 and L43

                When I went back to Children’s Hospital and told my surgeon that I got a second opinion at Mass. General, he didn’t seem too pleased. He took my daughter’s x-ray and walked into the next room and asked another surgeon to read her x-rays to prove his point that each doctor will read them differently. This surgeon said her curves wereT38 and L43. He basically said that he measures for the “most severe” curves. He tries to find the worst case scenario, so he can intervene before it is too late. He said my daughter could possibly be looking at two surgeries if we waited too long. He said the numbers don’t really matter because we all agree that bracing is the right thing for now. He just needs to make sure she will not progress in the brace. As soon as he sees progression he would want to correct the lumbar curve in the hopes that the thoracic curve would correct itself. He said this often happens. He said if we waited too long than the curves would get to the point that my daughter may need two surgeries. So he says he’s trying to prevent this by making sure I understand that her curves are serious. That is why his numbers are higher. Is it me or are all of these numbers all over the place? It figures that the surgeon I was sent to, is the one with the highest measurement. My problem is: They all pretty much agree that 50 is the magic number for surgery. So my doctor has my daughter 4 degrees away from this. The second opinion doctor has my daughter 19 degrees away from this. Which one do I believe? I wish I could just say I’ll switch doctors, but I’m not sure this is the right thing to do. For now, I really shouldn’t be worried about the numbers because my daughter is getting such a good in-brace correction. No one wants her to have surgery now. Originally my doctor told my daughter she only had a 20% chance of this brace working. After that last in-brace x-ray we were all surprised. I’m confused though…Maybe my daughter is getting such a good correction because the doctor was so far off with his numbers. The brace was fitted according to him writing T41 and L46. Maybe she really is only in the 30’s and the brace is kind of “over doing it”. What do you think about that theory? I’m just glad the brace is working for now because I don’t think I could handle the surgery. But as I said before I will always worry about her future. I have been looking around the different threads and will continue to do so. I hope to keep gaining as much info. as I can. I realize you are not all doctors out there, but I’m not so sure about how much these doctors can really predict with certainty. I want to make sure I know as much as I can about it, for my daughter’s sake. I am learning a lot just by reading the different posts.

                There was a Jess on a thread out there (I think JNYC)…I just want to say that I am keeping you in my prayers. I hope you find a way out of all that pain! I wish I could offer you something more than that to help you through this, but as you know I’m new to this all. Good Luck!

                Griffindor: I also want you to know that I am keeping your daughter in my prayers as well. I hope her surgery in Aug. will be very successful and as painless as possible! I’ll be anxious to hear about how you are all doing.

                Thanks again to everyone who has responded and tried to help me out!

                Chris

                Comment


                • #9
                  Chris, in the worst criteria, is really very simply to determine the veretebras (the most inclined) and could only exists a pair of vertebras (in fact could be more than one pair, but with exactly the same inclination, so the Cobb angle would be the same) if you let me see a photo of the x-ray, I think I could tell to you which are those vertebras. Surely the lack of precision in an image is too great for measure the Cobb angle, but not to determine the most inclined vertebras of a curve. I have nothing to do with medicine, but I knows enough about Maths, surely you too. I think you should to be sure about the degrees according each criteria and if you have two x-rays, you should to be able to compare both.
                  Some health professionals has not idea about how to use a protractor and elemental geometry concepts, is incredible, but it seems to be a fact. We must to do that work and we should to knows which criteria is followed by doctors to make statistics. I suppose is the worst criteria.
                  Any way I think brace is a great option to your daughter, specially if it is mixed with balance exercises. I Think that EDF is the best way to use a brace, I know about parents having great outcomes with this technique, but surely it is a debatable theme.
                  I think you are in the right way, keep the faith.

                  Comment


                  • #10
                    Hi Chris, here http://www.sastre-roca.com/casospracticos.html you can see some x-rays (Before and After the treatment) I think measured following the worst criteria. Look the previous to the last x-rays (14 años, 55°, Risser 3,5) you can see the vertebras selected.

                    Comment


                    • #11
                      Hi Fernando,
                      Thanks for the information on the EDF therapy. I did not know what that was. The pictures of the x-rays were amazing. Those kids are getting alot of correction. Is this what your daughter does? We decided to go with the Schroth program. It sounds similar to the EDF because they both address the rotation problem. My daughter is getting a good correction in the Boston brace too, so we will continue with that. I'm hoping by doing both my daughter may be ok in the future. How is the swimming going for your daughter? My daughter really didn't like it. She did it for the summer, but now she wants to stop because our school year is about to begin and she will be busy with dance. She is still doing her PT exercises every night too. We will be starting the Schroth program next summer. We decided to wait until then because she is getting a good in-brace correction now. We really need to be able to concentrate on the Schroth program. The new school year is about to begin and it gets so hectic. I hope my daughter's curves stay the same for the year. We will continue to be checked every 3 months by the surgeon. I'm going to try to figure out how to post my daughter's x-rays, so you can tell me what you think about her degree. I have to ask my son to help me figure out how to post those though. I'm terrible with the computer. I have now had many doctors tell me she is only in the 30 degree range, but my daughter's surgeon still says he's measuring in the 40's. I'll try to get them to you soon. Another opinion won't hurt. I do realize you're not a doctor though. I want to thank you for putting me in touch with swimmergirlsmom and Brooke. They have been very helpful. Hope to talk to you again soon. Chris

                      Comment


                      • #12
                        Hi Chris, is good to know I’m helping you, I hope that. The pictures of the x-rays are not of EDF but of FED http://www.sastre-roca.com/metodofed.html It means the same (English/Spanish) but they are different techniques. As I supposed it should to occur some day, now there are people combing both methods with great outcomes.
                        Much people are saying to me that I should to try with Fed Method. I don't know if it exists in your country.
                        Last year we were undecided between Fed and Rpg and we decided for Rpg. I think we should have decide for both. Combination of solutions is the best solution! My daughter also don’t like to swim, only in summer. The school is terrible and she has not time. We are trying she begin with Tai chi Chuan/Qui Gong, it seems to be very compatible with Rpg. My wife don’t want to run any risk with any other therapy. I know more than 200 but I can not try with none.
                        Schroth seems to be a great method, it not exists in my country.
                        It’s incredible that surgeons have different criteria to measure the Cobb angle. A surgeon that don’t know how to do it, is a really dangerous professional.
                        When I’ll look the x-ray of your daughter I’ll say you which vertebras should to be selected in the worst criteria (at least in the picture). The best you could do is to show it to an engineer or a Math professor and ask to him to say to you which vertebras are the most inclined and then to measure the angle determined for both. If you can talk with surgeons (I can not), tell them to say to you the source of the definition of Cobb angle, it should to exist in some place.
                        See you soon

                        Comment


                        • #13
                          Hi Chris

                          It is unfortunate you are getting so many different measurements. Most of the doctors know how to take the measurements but unfortunately it is not always clear which vertebrae is most tilted and it is not always clear where to draw the line.

                          I have done it many times and I also have some software that does it. Sometimes a doctor will draw a line parallel to the end plate while others will draw a line using the pedicles. These lines can be different. And a little difference easily results in several degrees of curvature.

                          I have seen some studies in which the same doctor remeasured the cobb angle and multiple doctors measured the same cobb angle. The result was that the same doctor remeasuring the x-ray could could be off by 5 degrees. And when it was measured by different doctors it could be off by 10 degrees.

                          I know when I am measuring them I have to be very consistent in choosing end plates vs pedicles. And often it it a bit if a guess to draw the lines. Sometimes a vertebrae end plate is very distorted and not straight, then it becomes a bit of a guess on where to draw the line.

                          If the pedicles are used, and if the middle of the pedicles are used, finding the middle of the pedicles can be difficult, again, based on the clarity of the x-ray it can be a bit of a guess.

                          With all of this said, my daughter's x-rays have been read many times by different doctors and I would say they are most of the time within 5 degrees of each other.

                          If different doctors are taking their own x-rays there can be a lot of variation. This variation can be 10 degrees or more based on several conditions. For example, based on whether the person is standing straight or a bit turned can make the measurement up to 10 degrees or more. Based on the time of the day the x-ray is taken can vary by a few degrees. Based on whether the x-ray is taken from the front or the back, it can vary by a few degrees. Unfortunately there are a lot of factors that can make some differences.

                          Also, I have seen some doctors measure using the same vertebrae as the first time measured while others are measuring the worse curve. It is my understanding they should always be measuring the worse curve.

                          I hope some of this is helpful. Your daughter's in brace correction is awesome. I hope she can wear it as much as possible. My daughter wears a Boston brace but she is only 8, almost 9.

                          Good luck and please feel free to ask any question. While I have a lot of experience reading x-rays and working with doctors and chiropractors and physical therapists, I have no experience regarding someone with scoliosis at the age of 14. There are a lot of differences based on age.

                          I also have the same worry what happens into adult life after skeleton maturity.

                          I wish you and your daughter the best.

                          Michael

                          Comment


                          • #14
                            Hi Fernando

                            I am researching FED. My daughter (8) has been wearing a couple different braces, the Boston brace and the SpineCor brace, but she has also been doing some physical therapy treatments. She has been able to reduce her curve from 36 deg to about 18 deg in the past 9 months.

                            (Chris - this kind of curve reduction is more often seen with juveniles under the age of 10 vs adolescents 10 and over).

                            These treatments are based on CLEAR, Pettibon, and Whole Body Vibration. I am researching FED because it looks like the results are very positive. It looks like there may be some similarities in the treatments. Thank you for mentioning it.

                            I have found very few studies supporting the methods we are using. But I did come across a study to support FED. Maybe it will provide some support for our treatment.

                            Again, thanks for mentioning it.

                            Michael

                            Comment


                            • #15
                              Thanks for the info.

                              Hi Michael,
                              Thank you for the info. about the measurements. I wish our measurements were only off by a few degrees. I really think the x-ray taken at Children's was done poorly. I'm trying not to obssess over it too much. We are getting a good correction in the brace and the surgery is off the table for now. I'm content. I was wondering if you know if there is an FED program in the US. I'm not sure where you're from. I'm in the Boston,MA area. I was also impressed by Fernando's post. I know he is in Argentina though. If you are in the US and know of an FED program around, would you please let me know? Thanks for your help and good luck to you and your daughter. I can't imagine how hard this must be for a child of 8 or 9. That's a lot longer in a brace. I don't know how my daughter would feel about that. She thinks 2 years is torture! Thanks again!
                              Chris

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