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  • #16
    I had no idea that there were so many folks out there feeling some of the same things I have been feeling. I too, have a 20 year old son with a 74% curve and a 15 year old son with kyphosis. The 20 year old refused to wear his Boston brace, and also took it off in the middle of the night and threw it across the room. I had a very difficult time with this, as I was hoping against all odds that he would wear it and stop the progression of the curve, as I lost my brother to a pulmonary embolism during his second surgery for scoliosis at the age of 36 back in 1985. I have lived in fear for the past 7 years, since my 20 year old was diagnosed with scoliosis that history would repeat itself. He went for a check up two weeks ago and learned that his curves had progressed from 62-74% and that surgery was in the future. To complicate matters, he has a blood disorder that predisposis him to clotting...which most likely my brother had as well. It has been extremely difficult to face that he will need to undergo the surgery, all the while knowing the strong family history. I found this website forum only a few days ago, and it has helped to realize that there have been many people who have had the surgery with positive results. I feel for all of you parents out there who are struggling with the same issues with bracing and surgery that I have felt. There is nothing worse than seeing your child suffer and feeling helpless to do anything about it. Teen age boys seem to have a mind of their own and how I wish my son would have worn his brace as it had been prescribed.

    Sue Fred
    Sue Fred

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    • #17
      My 15 year old son has already had 4 major surgeries in his life. Each and every one was scary for him and for us. He is now like an old soul - that is good and bad.

      What I worry about most is forcing a brace on him and it will do no good at all. So far I have never been given a very good rationale for standard of practice . . wait and see . .. brace . . surgery.

      What I think I have gleaned is that the wait and see/bracing may work to delay surgery if the curve is progressing. Delaying surgery may be good if it allows the child extra growth and development before surgery.

      But I have never ever read of any brace fixing anything or improving any curve.

      My son said, at the last doctor visit when the doctor said he was on the verge of getting a brace, that he was not going to wear a brace at all. He knew that surgery was inevitable and why wear a brace and be so restricted and tortured when they were just going to go ahead and do surgery anyhow.

      He has a lot of body image problems emerging now . . .his deformed foot, shorter stature, and curvatures are all taking a toll on him emotionally. If there has been a missing link to his ortho treatment it is a failure to recognize and deal with and consider the emotional toll this takes on patients, especially boys. They are so very different from girls, yet so much of what is out there seems to apply to girl patients.

      any information, observations, etc will be greatly appreciated.

      Comment


      • #18
        son with scoliosis

        I too have a son with scoliosis. He has three curves in his back. They are 27, 37, and 25 degrees at shoulder, midback, and hip. He was diagnosed in school at age 13 and was fitted with a TLSO brace so that the curve would not progress. He hated wearing that brace and it made him stand out. He wore it for a year and a half and then after he became severely depressed because of situations at school, he orthopedic doc switched him to a brace worn only at night that bent him in the opposite direction. He could not sleep and the depression just got worse. When he would take the brace off at night, eventually I just let him keep it off and get a little sleep. We also worked out a schedule with the doc and gave him a day off the brace now and then.

        He has stopped growing at age 15 and a half and the doc has taken him out of the brace for now. He is checked every 6 months to make sure that he is not progressing. In his mind, the worse thing about having scoliosis is the way it affects him. He has a definite rib hump and just being different from others is significant enough. He has always walked funny, toes out, and complained about back pain starting around age 12. I brought this up several times to the GP/Pediatrician but they did nothing. He had regular yearly physicals and then a growth spurt of 5" in one year. That is when the scoliosis became evident. There are other things I question. IF there is nerve damage to the spine because of scoliosis, can it cause bowel and bladder dysfunction? If anyone knows where I can find the answer to this, I would be glad for a link to answers. More people need to know that boys DO get scoliosis. I didn't know that scoliosis was in my husband's family - neither did he. His uncle had it. He is now 50 + and it just wasn't talked about.

        Comment


        • #19
          Update - surgery in 2 weeks - advice?

          Wow, I didn't realize it had been so long since I posted that first message. I had some health problems, then my son has been through a long saga of more health problems and I just didn't ever get back to this forum (then when I did I couldn't post for quite a while because I couldn't remember my screen name and the forum wouldn't/couldn't email it to me! Just a fluke that a search turned it up today).

          Let's see, the headlines are: David, now 16 1/2, went for his regular 6-month check-up with his orthopedist last January('05) and his curves had progressed almost 20 degrees in 6 months - the major thoracic curve up to 66 degrees. The doctor was very skeptical that the measurement was accurate, said there were a variety of reasons it could be "off" and told us to come back in 6 months, but that in any case we were getting to the point where we needed to talk about surgery. David didn't want to at the time, but I sure wish we had gone ahead and scheduled surgery for the summer.

          Fast forward to July '05: we go back and sure enough, the progression was "real" - the major at 68 degrees, the compensatory lumbar in the 50's, but I can't remember exactly. So we start talking surgery for real and decide on December - the doc had suggested August but I begged off, thinking it would be an awful way to start the school year. (Good thing, too, because I was hospitalized twice - in August and the beginning of September. And we don't have an extensive support system where we live. No family - a few, very busy friends.)

          I took David to see his primary care physician, just for a check-up and to make sure we had him in good shape for surgery in a few months. The doctor was alarmed to see that David had lost 6 pounds off his already very thin frame - and in only about 6 weeks, too. At a scoliosis-affected height of 5'8", he weighed only 102! The same as his 5'3" 20-yr old sister! Many blood tests, MRI's and specialists' visits later, we found out he has a chromosomal disorder, sometimes called Klinefelters syndrome, which is caused by having an extra x choromsome (girls are xx, boys are xy, he's xxy). As a result, his body can't make enough testosterone - he has had enough to make him look like his peers - he doesn't look at all feminine, but he is very thin. Treatment is lifelong hormone replacement - he has started taking a monthly injection of Delatestryl, an anabolic steroid - no effects, good or bad, noticed yet. But this condition is why he has been so fatigued, weak, and depressed for so long. He's been on a a couple of different anti-depressants over the last two years but has only had moderate success with one of them. His shrink was very surprised at the diagnosis, but told us that explains why David never had full success with the anti-depressant medication - when the body is fighting to make enough hormones and can't, there's no way the medication can be fully effective. It's all chemical - I understand it pretty well, but don't need to go into it here - I'm wordy enough.

          This xxy condition, with the low testosterone level, contributes to the development of scoliosis. Testosterone levels control bone maturity and growth and that affected his spine. (I wonder if now it isn't considered 'idiopathic', but with a determinite cause?) We've been told that no amount of brace-wearing would have held his curves. That took a load of guilt off David. Another effect with this condition is that it renders these males irreversibly sterile, and that will be something he will eventually have to deal with. We are all gradually adjusting to this news and at his age it's not easy to talk about some of the issues regarding this condition, so I'm really glad that we are already associated with a good adolescent psychiatrist who happens to be somewhat familiar with this condition.

          Sorry I am so wordy - but I'm including all of this just in case there's someone out there who might benefit.

          NOW - surgery is scheduled for December 12 - a couple of weeks. Pre-admission tests will be Dec. 8. The proposed fusion, as of last July, is from T-4 to T-11, posterior approach. This will stand if he hasn't progressed much, but from looking at him and the way he feels, I think his curves have progressed. We'll see on the 8th. He has a very noticeable rib-hump and I know they are taking the bone grafts from his ribs. I know the full defect can't be corrected, but I sure hope it's much less noticeable.

          I bought Dave Wolpert's book on scoliosis surgery (the 2nd edition) and it's been helpful for us. What advice do you, as adolescent surgery patients and parents of surgery patients have? We live about 125 miles from the hospital - what's your experience on the trip home if you had to drive a distance? Most of it will be on an interstate. Practical advice - any items that you found to be helpful - or not? Do we need to get a raised toilet seat, a shower chair? Exercise - our winters tend to be very mild, with occasional blasts, but our big problem in our semi-rural neighborhood is lots of large, loose dogs. I fear one of them jumping on David if we go out to walk - that would be bad. Should I try to find an inexpensive treadmill? Returning to school - the post-op plans indicate a return at 3 weeks - is this realistic? His school is huge and very spread-out. I already have a 504 plan in the works for his return, but that 3 week date seems terribly optimistic.

          Okay, that's A LOT to throw out there right now - I'll ask more later. Thank you in advance - you are an awesome support community.

          SanD
          Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
          Diagnosed Feb. '03, T36*, L28*
          Boston TLSO brace
          May '03 T44*, L36*
          July '04 T54*, L45* d/c brace, not holding curves
          June '05 T68*, L48*
          Initial post-surgery estimate T55*, L45*

          Comment


          • #20
            Hi SanD,
            I am a mom to a son with scoliosis. I read your first post, and it sounded so familar. It isn't that common in the male population. So I asked his doctor if he had many boys to treat. He said, yes because he specializes in pediatric scoliosis. But by far there was more girls. I first noticed my sons scoliosis when he was eleven. It was at 32 degrees. He wore a boston brace for eighteen months. He progressed anywhere from 7 to 10 degrees each four month check up. By the time his curve reached 45 degrees, his doctor said that bracing would no longer be effective. We schedualed surgery, which took about four months to get in. His doctor did his sub-speciality training in the Scottish Rite Childrens Hospital in Texas. I thought you might find that interesting, for isn't that where your son is having his surgery? We are from Michigan, and have to travel to Detroit to go to our appointments. It was a two hour drive home from the hospital. My son had to have two surgerys for his scoliosis, and he is quite active on the support site called Spine Kids. He wrote a story about his experience with scoliosis. It can be found on that forum. The page is www.spinekids.com/shane.shtml.
            It was a year ago November 9th, that he had his first surgery. This is what we did. Going home, we used our truck, so he wouldn't have to bend down to get into the car {he gained about two inches from the surgery}, so therfore was almost six foot. We were told he couldn't bend, lift or twist. To get positioned into the truck, we put a plastic bag on his seat. Then he backed up onto the seat, and turned his body to slid his legs in, the bag did the twisting for him. We were told to stop after an hour to give him a break. We had to stop to get pain meds for home anyway, so that worked out perfectly. At home, we used a lift stool for the toilet, and a shower stool. He also had a grabber. This is something that picks things up off the floor so you don't have to bend. Maybe you could check with your hospital, they may offer some of the neccessities of this surgery, to make for a good recovery. If you have any more questions, I'll be more than happy to help. Remember, we went through this not once, but twice.
            Take Care, Our Best to you and Your Family
            LeaEvelyn
            Last edited by LeaEvelyn; 11-28-2005, 09:09 AM.

            Comment


            • #21
              s&d,

              My son's surgeon also did his fellowship training at TSRH, they have an excellent reputation so you should feel good knowing your son will be in very competent hands. Best wishes to your and your son, hope all goes well with surgery and recovery.

              Renee

              Comment


              • #22
                SanD,

                My son, now 17, had surgery a year ago. I just wanted to address a couple of your concerns regarding scoliosis surgery and recovery. (Wish I could help with your other issues. Bless your heart. What a time y'all have had.)

                First, Bill did donate one unit of his blood and my husband donated a second unit. They were not needed. They recycled his blood during surgery and there was absolutely no need for transfusions.

                In terms of recovery, we couldn't believe that the doctor thought he would be able to go back to school so quickly either. (He had surgery on 11/3 and the doctor said he could go back after Thanksgiving. That's roughly three weeks.) He ended up not returning to school until after the Christmas break but only because he had trouble sitting all day long and the school wouldn't let him come half days. (The school district said he'd be marked absent in the classes he didn't go to each day, so we just kept him home and continued to have a tutor from the district come to the house. He actually was in no hurry to return!)

                When he did go back, the only thing special we did was have a set of textbooks in the classroom and one at home so that he didn't have to lug those back and forth. He did not need anything else special. Didn't even leave classes early to avoid being bumped and/or to get to the next class on time. He didn't want that and apparently, didn't need it, because he did just fine.

                In terms of special stuff at home - again, we didn't really get anything special for him. He used the toilet fine without a special seat. Took a shower on his own before I even had time to think about how he was going to do that (and didn't use any special chair there either).

                I don't remember how much he walked during his recovery time (that's all his doctor recommended - walking - and, a few weeks later, swimming if we had access to a pool. He definitely did not walk on a treadmill and we have one, but I envisioned him flying off of it so that was not something that we even considered!) Just ask your doctor. He'll know what's best for David. And if he recommends outside walking, someone will just have to walk with him and beat off the dogs!

                Hope this has helped. As you said, this is a great support community and everyone on this board understands what you are going through and is happy to answer questions or share in your concerns. So just let us know what you need.

                Take care,
                Susan

                Comment


                • #23
                  Thanks to all for sharing and providing good informaiton. I know each case is different, but learning of your experiences helps me to be both optimistic and prepared.

                  I read Shane's story - the pictures and x-rays were very encouraging. That's probably what I would share with David at this point, as any mention of complications or less-than-ideal results really gets him down, although he is aware of most of the complications that can occur. I am the filter right now and try to keep him focused on the positive future - I have to do that for my husband, too, because if he can find something to knaw on and worry about, he will (not that I don't worry - I just do it differently - like I come to this forum for support!).

                  We've had a second set of books for a couple of years. His school is very big and spread-out and they've all but phased out lockers, so everybody has to haul all of their very heavy books around all day. Since we had a medical reason at hand we requested a second set. There's been a little friction with a couple of teachers (one of them demanding, in class, to know "why are YOU so special that your daddy got you an extra set of books?!" Still makes me steam!), but most have been fine.

                  I will be meeting with teachers and administrators at his school next week, so I will be armed with more information - again some "best case" and some less-than best case to prepare for. I will be able to ask more specific questions because of all the good information I've gained from this forum.

                  Thank you again,
                  SanD
                  Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
                  Diagnosed Feb. '03, T36*, L28*
                  Boston TLSO brace
                  May '03 T44*, L36*
                  July '04 T54*, L45* d/c brace, not holding curves
                  June '05 T68*, L48*
                  Initial post-surgery estimate T55*, L45*

                  Comment


                  • #24
                    SanD,

                    Since you’re looking for positives, I went through some old correspondence to get dates so you and your son and husband would have some more positive references.

                    [Just for background info - I found Bill’s curve in June 2004 when he was 15. The pediatrician confirmed it was scoliosis and pretty advanced and referred us to an orthopedist who we saw in July. At that time, his curves were 28 and 53. The doctor said that surgery was our only option and we picked the first available date for surgery, Nov. 3. By November, his larger curve had progressed to over 60. He is fused T3-L3 and has two rods in his back.]

                    His surgery was on a Wednesday. It lasted about 6 hours. He went into ICU and was on heavy medication although he, surprisingly, was communicative pretty early on and remembers much of what most people say is not remembered. He started breathing exercises at about 5 p.m. - about 3 hours after getting to ICU - and they started rolling him at about 11:00 p.m. Breathing exercises were hourly. Rolling was every two hours. The next morning they took him off of his IV morphine. He was in ICU for a total of 2 nights. Friday, he moved to a regular room and sat up in the morning and in the evening for about 30 minutes each time. This was the most painful part for him and the only time that he said he'd rather be in school! By Saturday he was off of the morphine self-administering pump (not his choice, but a good one nonetheless) and walked around the nurse's station twice. Saturday they also removed his catheter. He remained pretty groggy through Sunday and, just for your knowledge, when he was awake he seemed sad. (The nurse said that was to be expected given what he had been through. The sadness continued for a few days.) On Sunday, he finally, barely, had a bowel movement and on Monday we got to take him home.

                    By the time we got home, he was able to walk - very slowly - without help, could get in and out of bed alone, and could sit for at least 30 minutes at a time, many times a day. He, actually, sat at his computer for about 30 minutes the first day! He was off of all pain meds - except for an occasional Tylenol - within the first few days of being home. 8 days after surgery several friends came over and they played cards at the dining room table for about 30 minutes. 16 days after surgery he went to the movies and 18 days after surgery he went to a friend’s house and played video games for 4 hours. I can't remember when the tutor started coming, but I think it was a week after we got home.

                    He returned to full days of school in January without any problems. Generally, he’d come home and rest, but did not seem to have any problems with the rigors of school - sitting, walking, etc. (His school has done away with lockers also. Must be a Texas thing.)

                    The doctor has always been very pleased with his checkups and told us at 6 months that he probably was fully fused. He wanted to see us in November for the one year checkup. We didn’t make that because his doctor moved AND in August, Bill started marching band and ended up with stress fractures in both feet. (The new doctor said going from not doing much to marching 4 hours a day would do that.) His feet have healed, his back held up to the rigors of marching (and the band played at state one year to the date he got out of the hospital) and he’s scheduled for a checkup in January.

                    He is not an athlete so this hasn’t really affected his quality of life very much. He still can sit and play video games and work on his computer and that’s pretty much all he wants to do. (And with the exception of numb shoulder blades at the start of band, his back did better than his feet with band.) In actuality, his only restrictions are no football and no trampoline and not to lift more than 50 pounds. Of course he can’t twist and bend his spine but he’s really used to that.

                    He never wanted to talk about his back before surgery and I wouldn’t be surprised if your son is the same. But I’m sure if your son wants to communicate with a boy who has been through it, Bill would be happy to email your son. Just let me know.

                    Good luck with your meetings next week. (I think that last week before surgery, I was trying to not think too much about what was to come because I knew I’d worry and I didn’t want Bill to pick up on that so I sort of stayed in a fog.)

                    (Sorry this got so long!)

                    Susan

                    Comment


                    • #25
                      Thank you sooo much - you can't imagine how encouraging your post was for me! (And then noticing "Central Texas" for your location...I was born and raised and lived 36 years in Austin and most of my family history is connected with Central Texas...moved to near Tyler 11 years ago - the trees are pretty, but I miss the clear creeks and limestone and hills and good, cheap Mexican food - mostly I miss my friends.)

                      (Oh, and my sister's name is also Susan and there are/were a bunch of Bills, including my brother and dad - okay, I know that's really, really reaching, but when you're feeling overwhelmed and a little alone things like that take on meaning for some reason )

                      I will share this post - or the highlights - with David. I'm sure it will give him some encouragement. He's been having more and more back pain recently and that's making him sort of look forward to the surgery in hopes that this pain will go away, eventually. On the other hand, he's worried about pain management and side effects of morphine, etc. I keep assuring him that many good people will be looking after him, and that his dad and I will be there, one of us, around the clock.

                      The information about your son's marching band activity will be of interest. We know how rigorous that is! Especially in August, in Texas! Just orchestra people in my home, but we're always in awe of what the band has to do.

                      I find myself making ever more detailed lists of things to do before we go to Dallas - must be one of my coping devices. One thing I'm being reminded to do is rest and take care of myself so I believe I'll go do just that, with this positive recovery in mind!

                      Thank you so much, and bless you for taking the time to share this!

                      SanD
                      Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
                      Diagnosed Feb. '03, T36*, L28*
                      Boston TLSO brace
                      May '03 T44*, L36*
                      July '04 T54*, L45* d/c brace, not holding curves
                      June '05 T68*, L48*
                      Initial post-surgery estimate T55*, L45*

                      Comment


                      • #26
                        SanD,

                        I would assume that though you miss friends, the geography, cheap Mexican food (would miss that too!) and the Austin area, that you’d be glad to be out of Austin. What a crazy place it has become. My husband, who went to UT years ago, still can’t get over how it has grown and changed. We’re in New Braunfels. Moved here in ’91 from Houston and, obviously, have never regretted that decision.

                        I’m so glad that my post helped you and hopefully, David. It is a very trying time and I remember always being comforted by people who were on the other side of surgery.

                        Regarding David’s back pain – I took Bill to a chiropractor the day after I found his scoliosis. (I looked at his back and discovered the scoliosis - will never forget that moment - because he complained about his back hurting.) I know chiropractors can’t fix the problem and get very mixed reviews, but my experience has been that they can adjust muscles to reduce spasms. I have a slight case of scoliosis and go to the chiropractor about once a month for adjustments so I knew and trusted this man. He reduced Bill’s pain tremendously in one visit. So, if you have someone you know and trust, it might be worth an appointment.

                        One other thing I thought of when rereading your post from 11/26. (I assume you’ve thought of it but wanted to mention it.) Following surgery, David will go several days without eating. As a result, he will not be able to take oral medications, so if he’s still on meds for depression, you might check with his doctor to make sure that won’t cause any problems. (Bill takes Zoloft for anxiety, so I can fully relate. He did skip his meds – with his psychiatrist’s blessing – and it was not a problem although I wonder if that contributed to his sadness following surgery.)

                        Try to have a good weekend and get some rest.

                        Susan

                        Comment


                        • #27
                          Yeah, you're right about Austin. My daughter's at UT and is definitely looking at employment elsewhere after she graduates. I know it's changed so much and it's crazier than ever, but the last couple of visits there have been remarkably pleasant. I'd just like to get back to the greater Austin-San Antonio-Hill Country area. That's where the remainder of my family is located. New Braunfels has always been dear to me - many happy childhood memories of Landa Park. So your son is a NBHS Unicorn?

                          So much on my mind right now, you see I'm taking a little mental vacation

                          I'll ask around about a good chiropractor. We went to a father/son practice years ago after we were rear-ended and all had whiplash. The father was pretty good but the son was too rough and the kids started saying, "I feel fine, nothing hurts!!!!!" just so we wouldn't go anymore.

                          I was thinking about physical therapy, too. I'd feel better if we had some sort of "prescribed" or structured therapy, but that seems to be fairly rare. I'm over-thinking this, aren't I?

                          I'm glad you mentioned the medication issue. Part of me tends to think that all doctors know about almost all medications but I've found myself spending a lot of time lately informing doctors about this or that medication that one of us is taking. TSRH contacted David's psychiatrist - I hope they discussed medication management, but I'm going to put a call in to him tomorrow. David's tolerated the Wellbutrin XL for quite a while now but he's been saying for the past week or so that he thinks he might be having some side-effects such as dizziness and some headaches and just feeling "off". He says maybe his body is telling him he doesn't need it, or that dosage, anymore.

                          We're feeling pretty good, and thanks to you, Susan, and others who shared such good advice, pretty confident and prepared. Feeling a bit nervous now about getting to our pre-op Thursday morning since they are predicting snow/sleet/ice for the Dallas area and into East Texas. You know the world here comes to a screeching (literally) halt with a little bit of ice. Just a little hitch, though, I'm sure I-20 will be fine (if it ever is).

                          David is ready now, no more nerves, wants to get the show on the road. The meeting at his school this morning went well and it looks like they'll work with us for whatever we need, post-surgery. He's already taken some of his finals and a couple of his teachers decided not to worry about giving him finals at all (shhhh!).

                          Thanks again. I hope I can be the voice of experience (good experience!) here in a few months. The input and advice from patients and parents here has been incredibly helpful and comforting.

                          SanD
                          Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
                          Diagnosed Feb. '03, T36*, L28*
                          Boston TLSO brace
                          May '03 T44*, L36*
                          July '04 T54*, L45* d/c brace, not holding curves
                          June '05 T68*, L48*
                          Initial post-surgery estimate T55*, L45*

                          Comment


                          • #28
                            SanD,

                            Yes he is a Unicorn. That’s so funny that you know that. Of course, it’s a pretty unique mascot.

                            I’ve been thinking about you, wondering if you got to your appointment yesterday. We had plenty of ice but not much on the roads. I know the Dallas area was hard hit. Hope everything worked out okay.

                            Just want you to know that I’ll be thinking of you and praying for you on Monday. When you get a chance – it may not be until you get home although I know some people have access to computers in the hospital – post and let us know how everything went.

                            Hang in there.

                            Susan

                            Comment


                            • #29
                              Your thoughts and prayers are much appreciated - I've relayed them to David and he is very touched by the support from strangers.

                              Had a difficult day all around yesterday. Read this http://www.scoliosis.org/forum/showthread.php?t=2909 if you have a chance and let me know what you think.

                              Must run (teaching a class in a few minutes), but I'll be checking in, just to help me get by.

                              By the way, toured David's hospital room (already assigned and decorated for him) - he's got an incredible view of Dallas and Reverchon Park. We'll have to bring his camera. The Dallas Cowboys and Cheerleaders are coming to Scottish Rite on Monday, but it'll be while he's in surgery. Too bad.
                              Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
                              Diagnosed Feb. '03, T36*, L28*
                              Boston TLSO brace
                              May '03 T44*, L36*
                              July '04 T54*, L45* d/c brace, not holding curves
                              June '05 T68*, L48*
                              Initial post-surgery estimate T55*, L45*

                              Comment


                              • #30
                                SanD,

                                Sorry to hear about your rough day. I totally understand your frustration, sadness, disappointment, etc. However, as all the other moms said in the other post, don't give up. I, too, assume the doctor gave you "worse case". Our experience was that they don't know anything for sure until they get in there. And, assuming he can get some correction, just the correction can help tremendously with the rib hump. Bill did not have any ribs removed (used donor bone for the fusion) and it was a fairly significant hump prior to surgery. However, now days, unless you really look, you can't detect the hump. All, without any ribs removed.

                                And, to further reassure you, the morning of Bill's surgery, the doctor said he might not get any correction (talk about bait and switch!) but at least it would be stabilized. Then, when he went in, he managed to get some correction. So don't worry too much about that yet (although I totally understand. It sort of makes you want to throw up. Right?)

                                And, when we went for our pre-op, they had no idea who we were. No one seemed to know why we were there and the person I spoke with was not there that day. Talk about questioning our decision. I thought if they can't be organized for a pre-op how is the operation going to go. But all went well, so try and be reassured by that. (I can't get over that his room is already decorated. Take that as a strong sign that all will be well.)

                                And just keep praying. I have good feelings about this for you and David, so don't despair. Here in New Braunfels, we will be petitioning God and all His angels and saints on your behalf.

                                Susan

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