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  • Two weeks postoperative

    Lisa had her surgery on October 25, and is now about two weeks postop. She spent 6 days in the hospital. Her surgery was a success and hopefully will continue to be a success as the recovery proceeds. Don’t have numbers yet but her curve is almost gone and the rib hump has disappeared. The doctor was able to use an all pedicle screw construct even though some of her pedicles were quite small.

    There were a couple of minor complications. One being that a chest tube was inserted for about 36 hours as a precaution because of a slight nick in the pleura around the lung that occurred during the thoracoplasty. The other being an IV infiltration that caused the PCA medication to be administered to the tissue rather than directly to the blood stream resulting in less effectiveness of the pain meds. The problem was diagnosed and corrected.

    Lisa is recovering well. She is down to 5 mg of oxycodone only twice daily. She is in and out of bed, walking, using the bathroom, and climbing stairs unassisted. Her back and rib pain has subsided greatly. Her biggest complaint now is her right arm hurting. The arm pain is perhaps due to the change in her shoulder elevation and we are thinking that this will subside when her muscles begin to adjust and even out.

    Thanks to the NSF and all who posted the information that greatly helped us get through this surgery.

    Mark
    Mark & Jane, Parents of Lisa
    Daughter 15 years old
    Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
    Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
    After: PT – 7, MT – 4, L – 15, kyphosis – 32.

  • #2
    Dear Proud Parents,
    We are so glad to see that your daughter's surgery went well. We are going for our second opinion on Monday and we are using a list of questions that you had posted! Thank you for being so thorough. Your information has really helped us along.
    It is such a difficult decision to make. I constantly ask myself; What are the important reasons to do the surgery?? Sometimes I don't know if the answers are right. Our daughter's curve is similar to Lisa's. Tori has a 50T 48L and so far we are looking at posterior surgery. She does have rotation as well.
    We are pleased to see that others are making good decisions (the best you can in these circumsatnces) and it really helps to see a successful outcome.
    Thank you for sharing your good news.
    Best,
    Patricia
    *BILLIE JOE*

    Comment


    • #3
      congratulations on a successful surgery the full impact of my own hasn't sunk in mentally yet, i still can't believe it's over and i'm sorted

      billyjoe - i can appreciate that as a parent it's a tough decision, but in my opinion, the consequences of NOT having surgery have the potential to be far worse than going through it. the implications of long term untreated scoliosis range from chronic pain and unhappiness with your body image to severely reduced lung function. fortunately nowadays scoliosis surgery is largely successful and it tends to be short term pain and frustration for long term gain
      diagnosed aged 14 (2001)
      braced from july 2001 to february 2003 to hold curves
      fused T11-L3 on july 16th 2005 (aged 18)
      Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
      scoliosis support forum

      Comment


      • #4
        Thanks for everyone's kind words. Lisa is a little over three weeks postop now. She is making steady progress everyday. We weaned her off of narcotics at exactly the three week mark. We have them on standby if needed. She is just taking 500 mg of regular tylenol twice per day. Her arm doesn't bother her much any more unless she uses the mouse for a while. She wants to get out of the house tomorrow and do a little clothes shopping at Kohls. Go figure!

        A home tutor started teaching Lisa this past Monday and Lisa is doing well catching up on her studies. She is a lot less tired being off of the pain medicine. We can only hope that her progress continues at this pace.
        Mark & Jane, Parents of Lisa
        Daughter 15 years old
        Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
        Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
        After: PT – 7, MT – 4, L – 15, kyphosis – 32.

        Comment


        • #5
          I'm glad to hear that Lisa is continuing to do well. Take it as a good sign she's ready to shop a little, a sure signal she's well on the road to recovery! Hope you parents are doing well also...

          Take Care,

          Renee

          Comment


          • #6
            Dear Proud Parents,
            How is Lisa doing? As I wrote earlier, we have gotten so much out of your shared information. Our daughter Tori is going to have her posterior surgery on June 1st in Boston. I do have some additional questions to review with the surgeon, but we felt really confident with him and feel as though she will be in the best hands.
            How has your daughter's recovery been? Did she have a favorite chair or something that helped her get comfortable? We wish her all the best in her recovery process and wish you the best too!
            Warm Regards,
            Patricia
            *BILLIE JOE*

            Comment


            • #7
              Originally posted by ProudParents
              She wants to get out of the house tomorrow and do a little clothes shopping at Kohls. Go figure!
              The magical urge to shop. It's a great motivator.

              One note of caution though: at about three weeks our daughter also thought it was time to go to the mall. Unfortunately, it turned out that being in the car made her very nauseous. She had been fine walking around and sitting up and so forth, but the car, the meds and the physical fatigue were a most unfortunate combination. Not having thought to take a bucket, we had to turn around and come home. A second attempt about 10 days later went fine.

              Congratulations on getting through the surgery, and best of luck with recovery time.

              Cheers - Patricia
              Patricia
              Scoli Mum from New Zealand
              Daughter Caitlin's surgery 2nd May 2005
              Posterior fusion T3 - L1

              Comment


              • #8
                Thanks for thinking of us and for your well wishes. Lisa is at five weeks postoperative now and she is doing great. She has almost no need for medicine anymore except for maybe a Tylenol before bed every other night. All of her steri-strips have fallen off and her incision is healing beautifully. If you saw her moving around now, you would never know that she had surgery, other than the fact that she follows doctor’s orders by making a very conscious effort to not bend, lift, or twist. She has been out shopping a couple of times and the trips were uneventful, except for the charge on the credit card. Lisa never really had much nauseousness during her recovery, but thanks for the advice.

                Pillows are her favorite way to get comfortable while sitting. Her favorite chair is the power recliner (not a lift chair). The memory foam topper on her mattress has also provided comfort while sleeping. Other items that have helped were the toilet seat extender and the adjustable shower seat. While the use of both was short-lived, they were invaluable during the first week or two.

                Have a joyous Holiday season,
                Mark & Jane, Parents of Lisa
                Daughter 15 years old
                Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                Comment


                • #9
                  Questions about instrumentation material

                  Dear Proud Parents,
                  We received a follow up letter for our daughter's upcoming surgery yesterday. While we feel strong about our decision in the surgeon, something he wrote has me concerned. "The fusion is accomplished by adding bone chips to the surface of the spine. Hooks and wires and screws and rods are attached to the spine pulling it into a straighter position." Also "I would plan to use titanium instrumentation so that she would be more MRI compatible in the future if needed". I recall reading previous posts that you also had concerns that pedicle screws only and stainless steel as opposed to titanium be used. Would you mind sharing your opinion on these points?
                  Thank You,
                  Patricia
                  *BILLIE JOE*

                  Comment


                  • #10
                    Patricia,

                    Sure, but beware that our opinion is a humble nonprofessional opinion. Many doctors use the instrumentation that your doctor described and have very successful outcomes. Pedicle screws do have distinct advantages, but some pedicles are too small to recieve screws. Some doctors like to have a firm game plan prior to starting surgery and do not want to be suprised if they have a pedicle too small to recieve the intended screw. Each doctor is going to use the instrumentation that he is most comfortable with and that is a benefit in itself. As far as titanium verses stainless steel, the titanium rods exibit a memory when bent at room temperature and can cause stresses later on if the fusion was long and the bend significant. This was the case in our daughter's surgery so we opted for stainless. Titanium has the future MRI advantage that your doctor mentioned and is a little more flexible than the stainless. Even after a solid fusion occurs, the fused part of the spine will still flex to a certain extent just like any other long bone in your body. If the rod is allowed to flex with the bone, then theory suggests that there may be less stress on the adjoining vertebrae and disks, hence another advantage of titanium. Is your doctor using strictly local bone chips for grafting?

                    Following is a description of the logic we used to choose our daughter's surgery. It may benefit you in some way:

                    Difference of Opinions

                    From March through August, we sought medical opinions for our daughter’s scoliosis. In the beginning, we assumed that the second and third opinions would concur with the first, and our choice of a doctor would be based on tangibles and not on actual methods. As we sought more opinions, we were quite surprised by the differences between the recommended surgical procedure specifics. These differences signaled the need for us to become more informed to feel confident in such an important decision regarding our daughter’s health. Below we have listed the variations between suggested instrumentation, fusion levels, and bone graft material by the different surgeons whose opinions we had sought. Hopefully this information will show the benefits and necessity of seeking multiple opinions in order to feel confident of one’s decision. All of the surgeons recommended that surgery be performed, albeit some were more conservative than others were. All recommendations were for posterior surgery for a 1AN Lenke curve measuring 58 degrees from T5 to T12.

                    Dr. Lonner, New York; fuse T3 to L1; all pedicle screw construct (about 9 to 10 screws); stainless steel rods; allograft (freeze dried donor bone).

                    Dr. Charles Edwards II, Mercy Hospital, Baltimore; fuse T4 to T12; pedicle screws (about 8 to 9 screws) with some wire; titanium rods, autograft from the hip; also gave option of BMP on sponge as graft material (note that BMP for posterior fusion has not yet been FDA approved for AIS).

                    Dr. Sponseller, Johns Hopkins, Baltimore; fuse T3 to L1**(see note); all pedicle screw construct (about 9 to 10 screws); stainless steel rods; autograft from ribs and local bone; 3 to 4 rib thoracoplasty.

                    Dr. Betz, Shriner’s, Philadelphia; fuse T2 to L3; all pedicle screw construct (28 screws); titanium rods; allograft (freeze dried donor bone).

                    Dr. Boachie, HSS, New York; fuse T4 to L1; hybrid construct using pedicle screws (about 2 to 4 screws) at bottom, hooks at the top, and wire in the middle; titanium rods; autograft from ribs; 4 to 5 rib thoracoplasty.

                    **Note: The final fusion level was eventually modified to T2 – L2 after further x-rays taken six months later showed that the magnitude and characteristics of the curves had changed. Nonetheless all of the above opinions were based on the previous x-rays and still differ radically.

                    Based on our scoliosis research over a period of months, we developed preferences and indifference for certain surgical procedures and techniques: (Please bare in mind that the following are strictly our own humble opinions.)

                     Choosing the optimal level of fusion with regard to all associated criteria is of utmost importance. There is a need to balance the various goals of surgery such as level of correction, preserving motion vertebrae, avoiding junctional kyphosis, leveling the distal vertebrae, achieving balance, leveling the shoulders, etc.

                     Autograft from the hip is unnecessary in adolescent posterior surgeries and is not worth the risk of long-term pain.

                     An all pedicle screw construct provides better fixation and is less intrusive to muscles and ligaments than hooks or wires would be. Stronger fixation allows for more rotation of the ribcage. A more rigid construct holds the vertebrae still while fusion occurs.

                     The memory characteristics of titanium rods bent at room temperature may cause internal stresses on the fused bone and fixation points, and can lead to junctional kyphosis problems.

                    Using the above criteria, we eliminated all doctors except for Drs. Lonner and Sponseller. We also felt that Dr. Lonner and Dr. Sponseller gave the most logical reasons for determining their proposed fusion levels. Choosing the appropriate fusion level is of utmost importance when considering long-term effectiveness of scoliosis surgery. We then had to decide whether to use allograft, or autograft from the ribs. There have been many studies indicating that allograft works just as well as autograft if the fusion site is prepared properly. Even so, autograft is still considered the gold standard by many, but is this benefit along with the enhanced cosmetic results of thoracoplasty worth the added rib pain or possible complications?

                    Concerning the tangibles that we have previously mentioned, all of the Doctors were impressive. Our daughter felt comfortable with all of the fine surgeons that examined her. All of the Doctors took the necessary time to answer our long list of questions. Every one of the surgeons who we saw was highly skilled, expertly trained, and very experienced. As the proverb goes, “There is more than one way to skin a cat(fish).” We realized that the decision of whether to have surgery or not and which doctor to choose was ultimately ours to make.

                    We compared references from the surgeons, but the references and post-surgical x-rays from Dr. Sponseller’s previous patients were incredibly impressive.

                    We reviewed our analysis countless times and chose Dr. Sponseller as Lisa’s surgeon.
                    Mark & Jane, Parents of Lisa
                    Daughter 15 years old
                    Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                    Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                    After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                    Comment


                    • #11
                      Thank you very much

                      Dear Proud Parents,
                      Thank you for sharing that information. I am grateful. Our list of Dr.'s considered for opinions are very similar. Our daughter's posterior surgery with a level of somewhere in the range of T5-T12 is what is proposed with a possible thorocaplasty as well. I have prepared a letter to Dr. Emans (Children's Hospital in Boston) asking more specifics about his surgical approach for Tori. Many of the items you outlined are the very things I need to research and understand. Thank you so much for sharing your valuable experience with us. I'll write more when I hear back from Dr. Emans.
                      Best Regards,
                      Patricia
                      *BILLIE JOE*

                      Comment


                      • #12
                        Dear Proud Parents,
                        I just wanted to share some of the answers that Tori's doctor forwarded. He states that stainless steel is his standard although he is recommending titanium because of better compatibility with MRI in the future.
                        He also states that his preference is an all pedicle screw construct. He then says depending on her particular anatomy, she could end up with some hooks; and wires even less likely.
                        Dr. Emans seems to reserve some of his decisions for the day of surgery. He says he will also ultimately decide on thorocoplasty at completion of the fusion portion of surgery. I think he is hoping for the surgery to give an optimal rib hump correction, but can't be sure until he actually sees the degree of correction.
                        We have been impressed by the fact that you do not mention Lisa having what looks like more pain than any of the girls without the thorocoplasty portion of the surgery. I thought it would create abundantly more pain. In the back of my mind, I do think the thorocoplasty may be required. Thank you for all of your help.
                        Best Regards,
                        Patricia
                        *BILLIE JOE*

                        Comment


                        • #13
                          Patricia,

                          Lisa’s lack of any substantial pain in the rib area is surprising to us too. She is currently not taking any medication, not even Tylenol. Per doctor’s orders, she is still sleeping on her back to allow the ribs to grow back in alignment. Perhaps she would have some rib discomfort if she slept on her side.

                          Our doctor was partial to using autograft and his primary reason for the thoracoplasty was bone harvest. A secondary benefit was cosmetic. Our daughter’s scoliometer reading measured approximately 20 in the thoracic area before surgery and was drastically reduced after surgery. However, with modern instrumentation and fixation, studies show that great derotation can be accomplished without a thoracoplasty.

                          Every doctor that we visited, who strove to use pedicle screws would always disclaim that he may have to use hooks or sometimes wire depending on the surgical situation. Have you spoken to several of Dr. Emans’ prior patients? Doing so may give you more of a feel for what to expect and may ease your mind.

                          Lisa is due for her six-week postop appointment, so we will post her progress again soon.

                          Happy Holidays
                          Mark & Jane, Parents of Lisa
                          Daughter 15 years old
                          Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                          Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                          After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                          Comment


                          • #14
                            Sorry for the delay in updating this thread pertaining to Lisa’s recovery, but we have been a little busy preparing for Christmas. Lisa is about seven weeks postoperative and doing very well, almost acting as if she never even had surgery. She takes absolutely no medications and hasn’t for some time now. She does have a quirk here and there, but nothing persistent. She occasionally describes some discomfort in a shoulder blade or rib, but it is never constant or troublesome, and then the next day the pain is gone, so it could certainly be attributed to nerves waking up. Lisa finds it more comfortable to still sleep on her memory foam pad but has fallen asleep without it. She also still finds it uncomfortable to lean against a hard-backed chair, but sometimes she does for short durations.

                            Lisa’s physical appearance is wonderful. Before surgery, her rib hump and uneven hips were noticeable. It never bothered her or us, but it was noticeable. After surgery, no one would notice anything. Her rib hump is gone and she is very balanced. Her left shoulder was elevated from surgery and still is a little bit higher but it has dropped drastically already and should continue to drop a little more over time. Her hips are more even now but still have a very slight tilt corresponding to the remaining lumber curve.

                            We have been back to see her surgeon for the first postoperative check-up, and x-rays were taken. Here are the numbers in degrees:
                            Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                            After: PT – 7, MT – 4, L – 15, kyphosis – 32.
                            Her proximal junctional kyphosis is now a plus 8 degrees, and her distal junctional kyphosis is a minus 8 degrees. The doctor really did a great job leading the fused vertebrae into the remaining spine on the lateral plane, which was a concern of ours prior to surgery. The rotation was not measured yet on the scoliometer, but the correction looks great. The first rib below the thoracoplastly is a little more prominent than others but that is to be expected and should not cause a problem. The surgeon was able to use all pedicle screws in the construct, however since some of her pedicles were quite small and the corresponding screws were small, the doctor chose to add extra screws to avoid a possible pullout during the derotation and straightening. A total of fifteen screws were used and all of them held nicely. Because of the extra screws and the increased rigidity of the construct, the surgeon felt that it was not necessary to install the rod cross-braces that can sometimes be a source of irritation. Lisa gained 1.5 inches in height.

                            Most people would be thrilled with the above results, but since we had such high expectations and confidence in the surgeon, we do have some disappointment. We feel that the lumber curve should have corrected a little more than it did because it bent out so nicely on the bending films. The most distal fused vertebra L2 is about 5 degrees off of horizontal and that leads into the remaining lumber curve preventing the compensatory curve from straightening. We believe that one of the previously mentioned extra screws, specifically the one installed on the right side of the L1 vertebra, caused at least part of the L2 tilt. L1 still had some rotation and L2 did not, so the trajectory of the screw heads did not align perfectly. This slight misalignment combined with the extremely short segment of rod between the screw heads of L1 and L2 tended to nudge L2 a little to the left. It’s not that bad, but as parents, we have to have some reason to worry. Hopefully, any issues with the L2 - L3 joint will not occur until many years from now or never at all.

                            Everyone, please have a joyous Christmas Season.
                            Mark & Jane, Parents of Lisa
                            Daughter 15 years old
                            Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                            Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                            After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                            Comment


                            • #15
                              Dear Proud Parents,
                              Thank you for posting Lisa's good news! It is so nice to see that she doesn't have pain. Is Lisa back at school? It's too bad about the concerns you have but time has a way of working things out, and like you've said any problems could be way in the future or not at all. Let's hope for not at all.
                              Lisa's surgery makes me think of considering thorocoplasty from the beginning for Tori's surgery with the advantage of both the bone harvest and the cosmetic improvement. We will have to bring this up with our surgeon. You seemed to have discussed all technical aspects in great detail with your surgeon. Was it welcome from him?( I guess I concern myself with "should I keep asking?" , when I know that I have to and I'm just afraid.) I've never been here before and here is a very tough place to be. I do know that I can do whatever it takes for my daughter.
                              It was great to hear your update! Keep up the good work.
                              Best Always,
                              *BILLIE JOE*

                              Comment

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