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Thread: I'm new..How long should I wait for surgery?

  1. #1
    Join Date
    Mar 2006
    Location
    Washington WV
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    19

    I'm new..How long should I wait for surgery?

    My daughters curve is at 55 degrees and her rib cage is rotating badly,leaving a large hump on her right shoulder blade. Her present Dr. keeps putting her off for surgery. Am I pushing too much for surgery? I just know my daughter is in pain and she is not getting better .... she had worn a brace for 7/8 years and is now 15 years old. Her Dr took her out of the brace because it was not working, she wore it faithfully all those years 23/7. He has been watching her for over a year,and she continues to get worse. What can I do. I don't want her to have surgery...I also do not want her getting worse . Please help. Niki

  2. #2
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    get a second opinion or a third, dont stop until you are satisfied. if her curve has progressed with a brace and has not stopped with age than it will probably keep going. the fact that she has pain is not comforting either. you are the one that lives with your daughter, not the doctor. you have to do what you know is best for her. i waited too long to seek a second opinion for myself. good luck on the search for an answer. i know it can be challenging. keep your spirits up.
    mandy

  3. #3
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Is there some where that you would suggest? We are willing to go anywhere. I am just confused about what degree of curve is considered surgery level. I am affraid that the rotation of her ribs is irreversible. Does the surgery correct any of that or just the spine itself. I appreciate you taking the time to talk to me this is all very scary. I am checking into Dr. Richard McCarthy in Little Rock Arkansas. Do you know anything about him?

  4. #4
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    408
    Niki -

    I am a mom as well and after reading your post, felt an overwhelming urge to reply. A progressive curve over 50* and pain are both indications for surgery. Your said your daughter has worn her brace faithfully for 7-8 years and her curve continued to progress. As a mother, I would discuss other options with your daughter. Is the doctor she is currently seeing an orthopedist or a family practioner? Does he specialize in the treatment of scoliosis?
    Please seek another opinion. I know you don't want her to have to endure a major operation, but it may be in her best interest. I wish you the best of luck and will keep you both in my prayers.

    Brandi
    Brandi
    Congenital Scoliosis, 58* lumbar curve
    Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
    L1-S1
    Dr. William Lauerman
    Georgetown University Hospital, Washington, DC
    Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
    http://brandi816.wordpress.com/

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    I agree. Get another opinion. You may not have to travel too far. There are good adolescent orthopedic surgeons in most states. Where do you live? If you need personal recommendations, let us know your geographical area and we'll be happy to recommend someone. Also, please check out the SRS website to locate a scoliosis specialist from that list. http://www.srs.org/directory/directory.asp

    I would also suggest you ask lots of questions. Ask these specific questions about the rib rotation and the surgeons plans to resolve the issues. You want to make sure whatever surgery you decide on, is done correctly the first time.

    Keep us posted. 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/

  6. #6
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Thank you so much for all of your concern. My daughter has been going to the Shriners Hospital in Lexington Kentucky since she was in second grade, and a few months ago we got a second oppinion in Morgantown WV with Dr Eric Jones. We pretty much got brushed off there. He was recomended by my daughters PCP. We live in Washington, WV. My daughters Dr. @ Shriners told us he did not feel she needed surgery, and that the hump on her back would not ever go away even with surgery. That she would be better off leaving her back the way it is and just watch it. Everytime he tells us a different degree of curvature for surgery. 47, then she was at 47 then he told us 50 degrees, then she got to 50 and now he is saying closer to 60. I am just so upset this was let go as long as it has. I wish I would have done more research before now and not just listened to one Dr. I know that we go through things for a reason. Thanks for your prayers.

  7. #7
    Join Date
    May 2005
    Posts
    672
    Hi,

    From what I was told by my son's dr., when the curve reaches about 49 is when surgery is considered;he prefers to do surgery before the curve reaches 60 deg. because the risk of complications increases the higher the curve measurement, and of course the correction is much better. The rotation is usually corrected by about 50% although the rib hump may be corrected more with a thoracoplasty (removing rib(s)).

    I hope you are able to seek another opinion ASAP. Be sure the dr. you see is an pediatric orthopaedic surgeon who specializes in scoliosis. Good luck to you, keep us posted. Take care,

    Renee

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again,

    Sounds like you need to find someone who will explain the details of your daughter's spine issues with you. Has your daughter had a spine MRI to make sure there are no spinal cord issues that would contribute to a progressive curve? Sometimes they find hidden issues that need to be taken care of. Especially if she's having back pain that is not being well treated with OTC meds. Just a thought.

    Also, since she's already in the Shriners system, I would suggest going to a different Shriners hospital. A place that has better communication skills. Shriners in Philly is a great place.

    Good luck searching!
    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/

  9. #9
    Join Date
    Nov 2005
    Posts
    96
    In my opinion, if theres pain go ahead with the surgery. I have a 40 degree curve, and i get a lot of pain....i dont have a humb....but i have pain every day, and im getting surgery in two months,,,yay...i am so excited!
    ~Wanda~
    Age: 18
    40TL curve pre op
    Posterior Spinal Fusion with Dr. Pablo Marrero
    San Jorge Children's Hospital in Puerto Rico
    June 7, 2006
    post op curve: 16

  10. #10
    Join Date
    Mar 2006
    Location
    Cincinnati
    Posts
    42
    Niki,
    My daughter has a similar curve 52 degrees along with a rib hump. She is having Surgery this week, a fusion T-3 to T-12 & a Thoracoplasty to remove her rib hump. Pray all goes well. Feel free to ask me questions regarding her procedure. Her surgery will be at Cincinnati Children's.
    Kate

  11. #11
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    I had a posterior spinal fusion with thorocoplasty when I was 17. My doctor said before my srugery that my curves were about 45 degrees, but recently he said he thinks they were closer to 50. I had a big rib hump, lots of pain and was starting to have difficulty breathing because I was asthmatic to begin with. If the doctor keeps changing his mind about the degree he wants to do surgery at that would sound to me like he just doesnt want to do surgery. I would DEFINATLY go to get a second opinion. Or, in your case now, a third. The doctor that did my surgery was my second opinion because the first one would not admit that my curve was getting worse eventhough I had a visible rib hump and my right shoulder was almost next to my ear. He tried to tell me it was all in my head. I brushed him off and havent seen him since. Sad to say I saw him for nearly two years, all the while allowing myself to suffer. Get help for your daughter. The sooner the better. If you waited 7-8 years in the brace with progression you know that there is just a matter of time out of the brace with progression before surgery is warranted and you want to find the right surgeon for the job before then. There is still hope for your daughter. Good luck with the search. Let us know if we can be of any assistance. Look at the SRS website, there are lots of great doctors there.
    Mandy

  12. #12
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Kate, (Breeze)
    When exactly is your daughters surgery? You are not that far from where we live. How old is your daughter?

  13. #13
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Carmell,
    My daughter had an MRI when she was in 2nd grade, and nothing was abnormal then. I have called other Shriners Hospitals and they act like since my daughter already is a patient of another Dr. they would rather not change.???
    I went on your web site and the story of your son was very inspiring. I also have a 10 yr old son named Brayden.

  14. #14
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Mandy (curvysat05)
    With your surgery, How did your rib hump look after surgery? Did they do Thoracoplasty?

  15. #15
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    Wanda (ScoliGal)
    I am glad you are excited about your upcoming surgery. My daughter however is scared. What helped you get through the nerves? Where is your surgery going to be?

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