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Thread: Visible rod after surgery?

  1. #1
    Join Date
    Jan 2014
    Posts
    6

    Visible rod after surgery?

    I'm new here. I'm a scoliosis mom (harrington rod 1981) now caring for my 15 year old daughter who recently had congenital scoliosis surgery. She has a hemivertebra, t10 and her primary curve was a kyphosis curve of 59 degrees. She was fused from T8-L2. She has had a very difficult recovery. Her surgery was in November 2013. Our biggest concern is her continued severe pain in her shoulder blade area and her rod is pushing up against her skin. I can see it from the top of her fusion till about two inches down her fusion. When I first noticed it we went back to the surgeon because he thought the hardware must have moved and he was going to operate immediately to fix it but after x-raying her he said nothing moved. He said it was so visible because she's pushing her shoulders, neck and head forward to avoid the pain which is making her rod visible. He hoped as she continues to recover she will stand more upright. So far the rod is becoming more prominent as the surrounding swelling reduces. I can't even begin to say how depressed she is about the continued pain and rod sticking out. It seems like she needs to have the fusion continue higher and the rod put in deeper (yes she is thin). Does anyone know how that surgery would compare to the first one? Has anyone heard of hardware being visible so soon? I know there are many people having revision surgeries for older hardware but I wasn't expecting this for her. Any similiar stories out there?
    Melissa
    Last edited by Lccmom; 01-10-2014 at 05:00 PM.

  2. #2
    Join Date
    Mar 2010
    Posts
    2,673
    Melissa,
    Welcome to the forum. I'm so sorry to hear about your daughter's continuing pain. I have a DIL who was fused at 16 years old. She is also very thin and we can see one rod through her skin at the bottom of the fusion. It digs into her muscle and makes it red and swollen. Since she is 23 soon to be 24, we know her fusion is solid (also took her for x-rays and a check-up this summer). They talked about removing the hardware for her if the pain got too bad. But, so soon after your daughter's fusion surgery, she surely isn't fused, yet. So removal at this point wouldn't be an option. She's still healing. It's a hard surgery and hard to get accustomed to a "new" posture. I don't know if any surgeon would recommend another surgery so soon or not. It might be wise to get the opinion of another scoliosis surgeon.

    My advice for now would be to ask the Moderator of this forum, Linda Racine, your question if she doesn't see this post. She is quite knowledgeable in this as she works in this field. I've heard of something called PJK (proximal junction kyphosis) occurring on fusions not going high enough. To the best of my knowledge, this is a condition where the person actually develops a bend forward (kyphosis) right above the fusion. I have NO IDEA if it is too early for this to be a problem. She might be resisting her new straighter posture since she was used to being bent forward from her original curve.

    I'm by no means a professional in this. I'm just trying to be helpful and give you contact to a person who knows better than I do and NOT to scare you in any way. You can PM Linda if she doesn't respond here. I'm sure it's hard for her to see every post. She's been a great resource for many of us.

    Best wishes and I hope your daughter feels better soon.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    Jan 2009
    Location
    Virginia Beach, VA
    Posts
    451
    Quote Originally Posted by Lccmom View Post
    I'm new here. I'm a scoliosis mom (harrington rod 1981) now caring for my 15 year old daughter who recently had congenital scoliosis surgery. She has a hemivertebra, t10 and her primary curve was a kyphosis curve of 59 degrees. She was fused from T8-L2. She has had a very difficult recovery. Her surgery was in November 2013. Our biggest concern is her continued severe pain in her shoulder blade area and her rod is pushing up against her skin. I can see it from the top of her fusion till about two inches down her fusion. When I first noticed it we went back to the surgeon because he thought the hardware must have moved and he was going to operate immediately to fix it but after x-raying her he said nothing moved. He said it was so visible because she's pushing her shoulders, neck and head forward to avoid the pain which is making her rod visible. He hoped as she continues to recover she will stand more upright. So far the rod is becoming more prominent as the surrounding swelling reduces. I can't even begin to say how depressed she is about the continued pain and rod sticking out. It seems like she needs to have the fusion continue higher and the rod put in deeper (yes she is thin). Does anyone know how that surgery would compare to the first one? Has anyone heard of hardware being visible so soon? I know there are many people having revision surgeries for older hardware but I wasn't expecting this for her. Any similiar stories out there?
    Melissa
    Melissa,

    I'm sorry to hear that your daughter is having so much trouble. I am experiencing the same issue and your post regarding your daughter is the first post that I have come across that seems to be the same experience that I am having. I had problems with my right rod a few months post op and five years later it has just become more bothersome. After xrays, MRI, and CT Scan, my hardware is in its original position and still has a solid fusion. All good things. My husband has comment often that over the past year it seems that I am carry my shoulders, neck, and head more forward. I can also tell that I am leaning forward at the hips as well. I would agree that it all stems as a way to avoid the pain. I'm considering possibly having my current surgeon clip the tip of the rod because it has become so prominent. My obvious concerns are having my muscles cut again, not eliminating the pain that I do have and creating new pain. It is definitely a balancing act that is for certain. At 42 I still consider myself pretty young still but feel worn out so I'm slowly leaning towards having the rod clipped....no pun intended. Have your doctors mentioned physical therapy for your daughter to build up her muscle tone in her back?
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

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