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  • #16
    post op

    wow, those are all good choices! Let me know how the appointment with Neuwirth goes. A friend of mine's son had surgery by neuwirth and he did a great job. He initially had surgery with someone else and there was a problem and they chose neuwirth after and neuwirth fixed the problem. I haven't heard of Lauerman and Moskovich though. When nicole was first diagnosed with scoliosis about three years ago we tried to get an appointment with Roye because i was looking into the spine-core brace, which is a flexible brace and dr. royes office were using them, but the wait was too long and i was kind of in a rush so i saw one of his associates. Is the appointment this friday? You'll have to let me know all about it.
    Nicole's visit with her friends went great she felt good. I can't imagine her going out yet, i think she is still in too much pain to do that. You also have to remember she had ribs removed too, so i think that hurts alittle more than the norm, but i'm not sure.
    write again when you can
    jennifer

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    • #17
      Hello all,
      Sounds like all our Nov 3rd surgery kids are progressing differently. Mostly bc they didn't have the exact things done.
      I can't believe Bill is off the pain medicine already!!! Yes no bone graft can eliminate some of the recovery time, but it's still hard for him I'm sure.....good job!!

      Now Jennifer, I think Nicole has come a long way from when she didn't even want to discuss the surgery. AND my God having ribs taken out, I can't imagine how that feels on along with the instrumentation. Stephanie has really not walked anywhere but to the bathroom and only up the stairs twice and down (for a total of 2 showers.)yea.
      I am not pushing her to walk much bc she is really taking the tylenol and valium every 3-4 hours. Her pain seems not to be decressing and doped up her balance is really off.
      Also it has been raining here the last week so it is very hard to find somewhere she can get out and walk to have a goal you know.
      My first instinct is to help ease her pain and I know she will get up and walk when she feels stronger. Just forcing her to go upstairs everyotherday seems enough now.
      Her hip graft and shoulder baldes give her alot of pain and she is not a cry baby but I see alot of saddness in her eyes and she is frustrated at asking and depending and embarrassed at us seeing her body half dresssed , she says all this.
      Anyway that's what is going on here. I 'm sure Nichole is scared to walk(I'm scared for them to walk!!) anyway another thing, the shower deal: The water does not hurt at all and I use dial antibacterial (yellowish) liquid soap on her back. I just pump it on the stich areaor a washrag and squeeze over, and I promise it didn't hurt Ste, I don't know why but it really doesn't sting at all and it takes the itching away too not to mention cleans it. That is one thing I've told her must be done bc I'm scared as hell about infection and them going back in to clean it!! Good luck and wish us all strength!!
      Mamakay
      now 16 yr old daughter
      with worsen 65 degree upper curve
      surgery Nov 3, 04

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      • #18
        post op

        hi kay
        i'm glad you wrote. I was wondering how you guys were doing. I think bill is doing the best out of all of us. Nicole and stephanie seem to be moving almost at the same pace. Nicole has been having some pretty good days. She has been sleeping through the night for the past three days Yea! Has stephanie yet? I heard that the hip does give them alot of pain. I spoke to someone whose daughter had the surgery 1 week before us and they have alot of pain at the hip. Nicole finally let her friends come over yesterday, which was really good for us. I heard her laughing with them and having a good time. She needed that. Maybe it will motivate her to get moving more. I spoke to the hospital and told them how she is doing and they said she needs to be moving more. She does the stairs very good, which she does a few times a day because she lays on the couch downstairs and then when she wants to sit she comes to the couch upstairs with help of course and at night she goes back down. The stairs do not seem to bother her much at all. Getting up is hard and walking hurts.
        Well everyone says the hard part is over, but the recovery is a slow process. When will stephanie start school work and when do you go for a check up at the dr? I'm glad ours is not until the 29th it will give her more time to recoup and be able to walk there.
        keep in touch
        jennifer
        p.s. she still won't take a shower no matter what anyone tells her. I am going to have a party when she does

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        • #19
          Just a quick note to say that I'm so proud of these kids! I can't imagine being in their shoes. Braydon has had several surgeries that involve bone cutting, etc. and each time the hospital staff will always say that bone surgery is one of the most painful procedures to recover from - I believe it! Jennifer - Nicoles sounds like she's doing great. The hospital wants her moving more because her bowels will end up stopping (again) and her muscles will begin to atrophy very soon if she doesn't keep moving. Pain or not, its important to move several times each day. I'm sure her ribs are more painful than anything. I know. She seems very fragile, but she isn't as fragile as you might think. Her body is very strong and the incisions, by now, should be closed and very much in place. The fusion material is already beginning to become solid. The rod placement will make sure of that. She has many more pluses on her side than she may realize. I hope she will continue to improve each day. Keep up the great work! And Stephanie and Bill are doing great too. I'm sure of that.

          My best to all!
          Carmell (Your resident cheerleader... LOL),
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

          Comment


          • #20
            post op

            hi carmell
            thanks for the encouragement! Things are going well here. Nicole's day was fine not too many complaints. She is so much more comfortable sitting. Her tutor will be starting on Monday, they wanted to come this week but i though i'd give her one more week to rest and then she should really be up to it. She probably is now, but we'll wait. I was surprised nicole said her rib isn't bothering her. I hope that doesn't change we'll see. Wow, i didn't know all those things are going on already inside. I don't know how you've done this so many times. Poor braydon, he must be a real trooper! How is he doing?
            Jennifer

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            • #21
              Hi Jennifer,

              I'm so glad to hear Nicole is doing better. I'm with you - the tutor can wait another week. Not a problem, I'm sure. I think the better she feels when she does start with her schoolwork, the better she'll do and the more active she will want to be. I'm glad her ribs aren't hurting her as much - great news.

              Thanks for asking about Braydon. He is doing very well. He's going on a field trip with his class tomorrow (to watch a play/musical) so that's kind of exciting (something new to look forward to). He does well in school. He's not an overachiever, but that's okay too. As far as his surgeries - this is his only life. He doesn't know what its like to NOT have surgery every 6 months. He knows that all the other kids in school don't go to the doc like he does, but for him, its all in a day's work. He actually thinks having surgery is a glorified vacation from school! He also doesn't mind the attention he gets at the hospital. Our hospital doesn't bring routine meals at a scheduled time, instead, they have "room service". Between 7am and 7:30pm, when you get hungry, you call and order from the menu. That's his favorite part of staying in the hospital (even tho he doesn't eat much at all - calling for room service makes him feel special). His strength is what keeps me going. He's got an amazing attitude, because he's done this from the beginning. Nothing new here (for him).

              You'll do great too. Keep up the good work. Keep up the positive reinforcement. She's making progress everyday. Keep encouraging her and you both will do fine. Take care!
              Carmell
              mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

              Comment


              • #22
                post op questions

                Does any one know anything about overcompensatation of a curve as a result of surgery?
                I have been looking at my daughters back since her surgery was complete and the incision seems to curve alot the other direction.
                I have heard some stories how the Dr overcompensated and the curve is now more the opposite way.
                I wonder if the back changes during the year of recovery or if this visual curve I am seeing is ok.
                She hangs her head low and the neck area sticks out, does anyone think she is favoring sore muscles since she is in tears over the shoulderblade pain and it hurts to raise her arms.
                The surgery was Nov 3 and it seems like the pain is still intense.
                Also does anyone think her sleeping in a chair (leaning back on pillows somewhat) is bad for her recovery?
                Laying in bed upsets her stomach she says.
                Please let me know if someone else is experiencing or has some advice.. Thanks,Mamakay
                now 16 yr old daughter
                with worsen 65 degree upper curve
                surgery Nov 3, 04

                Comment


                • #23
                  post op

                  hi mamakay
                  i don't know about the over compensation thing sorry i can't help you with that whole thing, but i'm sure someone here will have some knowledge on that. Also, when do you see the dr? You probably go around the time that i do which is at the end of the month. I think you said that you didn't know what he got her curve down to either yet, is that right. I'm sure everything will be fine and it is just her still being sore. Nicole's incision does not look like a perfect straight line it has a little curve to it i think. I'll have to look at it again today. How is your daughter sleeping at night? Is she going all night or still waking up for pain med?
                  I hope she starts to show some improvement this week for you. Keep in touch and let me know how she is. I know this is tough and a slow recovery. Oh and about her sleeping sitting up i don't know see what some other people say. I know nicole is not comfortable on her bed so sleeps on the couch. Hey, whatever works at this point.
                  jennifer

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                  • #24
                    post op

                    hi carmell
                    just wondering does braydon go through the same recovery process after each surgery? I mean like is he on the morphine pump, not able to get up easily, etc.. or is it less painful than when they have to initially put the rods in? Just curious. Hope all is well. We are now at the beginning of the start of week 3. I can't believe how fast this is going.
                    jennifer

                    Comment


                    • #25
                      About overcompensating... The only time I've heard about this as a possibility was when I attended a spine conference and a couple of the surgeons talked about it in their presentation. Their point was that some surgeons don't remember to consider overall body balance when performing the surgery. Instead, they try to get as straight a spine as possible. Sometimes straight is not the optimal goal. The goal of any scoliosis surgery should be to achieve a well-balanced spine, even if that means there is still some scoliosis remaining. The surgeons showed xrays of patients who had very straight spines, but the balance of the neck and pelvis was far worse than the pre-op/scoliosis xray. Maybe a call to the surgeon to ask if the post-op pics showed a good overall body balance (i.e., neck and pelvis are well-aligned) would be a good idea. Just a thought... Also, she may want to consider sleeping flat now that she's recovering. I can imagine the muscles in her neck would like a break from the tension and stress of being upright most of the time.

                      Jennifer - Braydon's expansion surgeries are not as invasive as the initial implant surgery was. He usually requires narcotic medication and anti-muscle spasms (Valium) meds for the first day or two post-op. By the third day, he's recovering nicely with little discomfort (as long as we keep on the Tylenol/Motrin schedule). He has already had a rod replacement for each of the two rods. The replacement surgeries are more extensive than the expansion surgeries, but less invasive than the implant. No chest tube this time, etc. He does use a PCA pump (last time with Dilaudid as the medication of choice) for about 2 days post-op. He may be having another replacement of both rods in one surgery in March - depends on how much he grows between now and then. He's already near the end of the lengthening sleeve on each rod.

                      Continued speedy recovery cyber-vibes to all the recent surgery patients!
                      Carmell
                      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

                      Comment


                      • #26
                        Hi Mamakay,
                        I had a similar concern with Amber's neck. The point where the back becomes the neck seemed to stick out or be more pronounced. Her head didn't really seem to be out of alignment but we were both concerned about this 'lump'. The doctor said that it is mainly due to the fact that her back is now in a different position. He told us to have a good look at other people, and to remember that she is going to look different to what she did pre-op. I think to because she had lost a lot of weight it was more noticable. Now that she is gaining weight and is 6 months post-op it is not as obvious and it has never caused any other 'problems'.
                        Still ask your doctor about it though.
                        Best wishes.
                        Cheryl.

                        Comment


                        • #27
                          question for Susanna...?

                          Hi everyone,

                          I'm so glad to read these posts and pick up the tips - and, not least, to hear that Nichole, Bill, and Ste are through and safely on the other side of surgery.

                          Question for Susanna: could you let us know how the five docs go? Especially Neuwirth, Roye, and Moskovich. I'm a few years off (adult) surgery yet, but chances are it will be in NY and I'd like to monitor a few years with the same doc prior to surgery.

                          If you feel weird writing about them online, maybe you could email me at lrmb24@hotmail.com

                          I'd be forever grateful!!
                          Thanks, everyone, for sharing your experiences in this forum.
                          ~Laura
                          30y/o
                          Upper curve around 55
                          Lower curve around 35

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                          • #28
                            For lrmb

                            Of course! I will let you all know how the appointments go I am confident that all five of these guys are excellent surgeons, and it will be tough choice. I will certainly let you know what I think and why we ultimately pick one.

                            Susanna
                            Susanna
                            ~~~~~~
                            Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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                            • #29
                              Thanks! I would really appreciate that. Take care. ~Laura
                              30y/o
                              Upper curve around 55
                              Lower curve around 35

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                              • #30
                                post op

                                hi mamakay and bills mom
                                just writing to see how the kids are doing? Any new updates? Hope all is well, write and let me know how everything is going.

                                jennifer

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