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HELP! Info needed, fusion done, rods out, now worse and surgery needed AGAIN! HELP!!!

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  • HELP! Info needed, fusion done, rods out, now worse and surgery needed AGAIN! HELP!!!


    If anyone has any info or experiences like this I would love to hear from you. This girl is 16 and in 2002 had a spinal fusion done (she was around 50 degrees). Because she got a really bad infection, they removed all the hardware 11 months later and doc said she was fused. Over last year it was visibly obvious she was getting worse and getting more curved. Finally was able to transfer records due to insurance changes and get appt to see a new doc. Her curve is at 70 now and they said she needs surgery again. She is so upset about this! I feel so bad for her. This doc says it can take up to 4 years for the bone to fuse. I feel lied to by the old doc, apparently she was not fused! If anyone has had similar experience I would appreciate any info. Doc has recommended us to dr betz at shriners in philly, from what I have seen here he is very good but there may be a wait for him. I don't want her to get any worse so dont want to wait too long. Any other dr recommendations in eastern PA or western NJ? (doesnt matter how north or south they are) Thank you very much!!

  • #2
    Hi Bunnie...

    I run the Scoliosis Association of San Francisco, and came across a teenager who had an identical problem about 5 years ago. I'm happy to report that I put her in touch with a doctor who redid her fusion and she was very happy with her results when I last spoke to her parents.

    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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    • #3
      Hi Bunnie,

      I can understand your anger and frustration. Please try to find a reputable surgeon to help her out. Dr. Emans in Boston is wonderful, as is Dr. Betz and his colleague Dr. D'Andreas (sp?). Take care in interviewing the right surgeon. I will send my best wishes that the outcome will be excellent.
      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
        Hi Bunnie....

        I'm not sure if he can help you or not, but we've been very pleased with my daughter's surgeon, Dr. Lee Segal, who is located in Hershey, PA. My daughter was seen by Dr. Betz, and Dr. Segal speaks very highly of him, but you are right--the wait is usually very long.

        Good luck.

        Mary Lou
        Last edited by ; 01-08-2005, 05:26 PM.

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        • #5
          Thank you for your support and help. It is just so overwhelming knowing that we have to go thru major surgery for a third time! If anyone knows of any medical websites that discuss 2nd fusions or anything that we are going thru I would greatly appreciate it. Thanks again!

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          • #6
            bunnie
            i guess you can go on the revision part of this message board. Hope this helps
            jennifer

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