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Is there something wrong with the rods?

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  • Is there something wrong with the rods?

    Daniel and I have been worried about this lump at the bottom of his fusion. At first, we noticed it when he slumped over, but it would disappear when he stood up. Now it's there when he stands up. I'm scared, so scared, that the titanium rods are straightening out, or that he has done some damage by bending over a few times. The post op appointment is on Wednesday and I'm so afraid that the surgeon didn't fuse enough (he stopped at L1) or didn't shape the rods right. He's feeling GREAT and this just has us so worried. Also, his right shoulder blade sticks out more now than it did just two weeks ago. It's as if some twisting is going on. I want to scream! Here's a comparison picture of his profile the day he got home, two weeks ago, and today. http://people.virginia.edu/~cgs2d/backchanges.jpg
    Does anyone have any ideas about this? How to approach this with the doctor? What if he's defensive and says it's normal?
    Last edited by Christine63; 07-30-2007, 02:33 PM. Reason: need to add something
    Chris:
    Mom to Jessica (21), Andrea(19), and Daniel (16).
    Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

  • #2
    Christine, take a deep breath & try to hang on until Wednesday. It's not long now..... I'm sure your surgeon will have the answers.

    Laura X
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

    Comment


    • #3
      Hi Christine,

      When I looked at the photos, I can see the surgical swelling in the shower photo - his back and tissues are still puffy from having had surgery. The newer photo shows a leaner back - surgical swelling is going away nicely. I'm not discounting that there could be a problem with the devices, but I'll bet the surgeon isn't going to do anything about it right now, even if there is a problem. My Braydon developed a bursa over the bottom attachment site of one of his rods. This is caused by friction - the rod rubbing under the skin. A bursa is a fluid filled sac. Maybe he could be developing a bursa? I don't know. My point is there could be several reasons for the difference between now and 2 weeks ago. Try not to panic, especially since there is not pain/discomfort with these changes. Also, remember that his body is still "settling" into his newly shaped torso. There are so many mechanics involved with scoliosis surgery. I would be asking the surgeon these very good questions, and anything else that concerns you. I wouldn't take "this is normal" for an answer. The surgeon needs to explain WHY these changes are taking place, and what to watch for, and what to be concerned about. Good luck.
      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/

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      • #4
        Swelling

        Before I read your post, Daniel and I started thinking about swelling. So, we decided to set up the same shower photo. I posted the before and after shots here: http://people.virginia.edu/~cgs2d/ba...ges_shower.jpg and you can really tell that he has lost weight. He got on the scale this afternoon and was 146 (at over 6 feet tall). Before the surgery he was 10 pounds heavier. I don't know what he was the day he came home, July 6th, but with swelling and all, it was more than now. It's obvious just by looking at the pictures. Even if the difference can be attributed to swelling, his back just doesn't have a natural curve to it. I hope to find some calming answers Wednesday. I'm glad you mentioned a bursa. That may be what it is.
        Thanks.

        Chris
        Chris:
        Mom to Jessica (21), Andrea(19), and Daniel (16).
        Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

        Comment


        • #5
          Hi Christine

          I'm not sure if I can put your mind at ease but my friend's son had the same thing happen and they were panicking. I know at 6 weeks it was still there, they have another appt. on Aug. 10, I guess they'll address it to the dr. at that time since his PA couldn't give them a good answer at the 6 wk post op (about 2 wks ago). He's fused from T4-L4 and also has titanium rods. His swelling was in the lumbar portion only and looked as if the curve was inverted. I just told her about this because they sound so similar. If you find out something, I'm sure she would be very interested too. Apparently, it's not giving him any pain either.

          Take care

          Comment


          • #6
            So, we're not alone

            I will let you know what we hear Wednesday. I SO hope it's some sort of swelling, not a screw pull-out or the titanium reverting to its original shape, or other scary stuff.
            Chris:
            Mom to Jessica (21), Andrea(19), and Daniel (16).
            Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

            Comment


            • #7
              Christine...

              I think almost all of us go through a phase where we think something is wrong with the implants. It's hard for me to tell exactly what you're talking about, but since Daniel is feeling good, I'll bet he's OK. You'll know in about 40 hours.

              Regards,
              Linda
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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              • #8
                As part of the healing process "bursas"-sacs form around the hardware. This can sometimes be painful for awhile. My surgeon said if the pain does not abate they can be injected. The pain went away in time. It felt bizarre to the touch. Try not to worry too much.
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                Comment


                • #9
                  Today's doctor visit

                  We were at the doctor's office over three hours this morning. I was very concerned about the lump that had formed on Daniel's back at the bottom of his fusion. My worst fear was screw pull-out, because that's how it looked to me. But Daniel wasn't in any pain there, so that helped temper my anxiety. Dr. Abel took a series of three x-rays to make sure. He compared the x-rays from the hospital to those taken today. There are no screw changes. His curves, however, have progressed from the time of surgery. After surgery his 57 degree curve was around 15 and now it's 26. His lumbar curve is 20 when it was basically zero after surgery. I'll try and post the x-rays after the nurse emails the files to me.

                  The conclusion is that Daniel has lost about 15 pounds since the surgery and has lost muscle mass too. The doctor thinks that his posture has something to do with the lump, and that physical therapy and exercise will improve everything. I sure hope so. We got a prescription for PT and I hope to get him in ASAP and as frequently as we can. With the hospital bill, we've maxed out our family deductible for the year, so we won't have to pay anything for PT. He goes back in three months for another follow-up appointment.

                  Anyway, some of you knew about this appointment today and were concerned along with me. I just wanted to pass on the news that everything looks like it's going to be OK as long as Daniel starts exercising and putting on some muscle mass. The doctor even cleared him for mowing the lawn as long as he doesn't do the hills!
                  Chris:
                  Mom to Jessica (21), Andrea(19), and Daniel (16).
                  Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

                  Comment


                  • #10
                    Thanks for the update. So the lump is not due to tissue swelling at all? I guess the good news is that the hardware is ok.

                    I'm surprised about the change in correction, I didn't know that would happen. Did the doctor say that's to be expected and is normal? I need to ask about that.

                    I'll tell my friend to take a look at this, her son is also in PT but I don't know if it's for this same reason. He's having problems with low appetite and is having a hard time putting back any weight, that may be why his lumbar area is still pronounced.

                    Other than this, your son sounds (and looks, great photos) like he's doing great. I bet it's such a relief to be done with it.

                    Comment


                    • #11
                      I'm so glad Daniel's situation can hopefully be improved with PT & that the lump doesn't seem to mean much. Do they think that the PT & increase in muscle mass will improve his correction again? I didn't realize correction could change so much so quickly when the fusion & instrumentation look so good.

                      I'm hoping to get a PT referral at Alexander's post-op appt. tomorrow. His posture really needs help too. His back looks flatter but his posture is worse than before the surgery...

                      Take care & please let us know how the PT goes.

                      Thanks,
                      Laurie

                      Mother of Alexander & Zachary:
                      Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                      Zach is 13 years old and very energetic.

                      Comment


                      • #12
                        Christine,

                        Just curious - were the post-op xrays taken laying down? If so, then gravity may be part of the "progression" of the curves. Maybe this is how his back is "settling" into his new body. Better balance, better stability, still flexible, etc.

                        More best wishes for a huge appetite to Daniel.
                        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


                        • #13
                          You know, you're right.

                          The post-op films were taken lying down.
                          The nurse just sent me all the films from today as digital images. I'm making a mini video that shows the change. It will be interesting to see and add to as things change even more. I'll post the link once I finish it. I hope once his body gets stronger and he has actual muscles in his trunk again, that things will be more supported. Because right now, it doesn't look so good. You'll see.
                          Chris:
                          Mom to Jessica (21), Andrea(19), and Daniel (16).
                          Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

                          Comment


                          • #14
                            X-ray changes video

                            See the 23 second video (you can hardly call it a video) here: http://www.youtube.com/watch?v=uBRvN8k3Yj8

                            I tried to line everything up the same. You can see that where the instrumentation stops and the lumbar spine starts, that there's a kink-of-sorts, like a sideways joint. I hope that muscle strengthening through physical therapy will straighten that out because the lumbar curve was always a compensating curve.
                            Chris:
                            Mom to Jessica (21), Andrea(19), and Daniel (16).
                            Daniel had surgery 7/2/07 from T3-L1 to correct three curves, the worst of which was 57 degrees.

                            Comment


                            • #15
                              I just re-read your signature and I can see that Daniel's fusion will be similar to Nicole's. She is having pedicle screws (stainless steel). What did he have?

                              We just found out that Jessica is an exact match for Nicole -- A+. She can't give blood until she turns 17 which is 2 weeks before Nicole's surgery. She will most likely have to give it on her own birthday because we are going away for a couple of days after that and then we were told it would be too late. She is happy to do it. Nicole, who is petrified to give her own blood can't believe that her sister is doing this for her. She said, "I don't know if I could do it for Jessie, if she needed it." Let's hope we don't need to worry about that.

                              Christine,

                              Wishing you and Daniel all the best.
                              Melissa
                              From Bucks County, Pa., USA

                              Mom to Matthew,19, Jessica, 17, and Nicole, 14
                              Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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