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  1. #1
    Join Date
    May 2011
    Posts
    7

    Few questions...

    Hey, I'm a 22yr male college student and have a 57 degree curve in my mid-back. I don't know remember it's exact location or the terminology used as it's been a while since I last saw my doctor for that matter. Although my scoliosis hasn't gotten any worse in the past year and a half (when I first went to a doctor about it), it continues to cause me pain while driving, sleeping, or carrying things (such as my backpack) that uses or presses against those muscles around the curvature. Not to mention the insecurities one feels while at the pool (or anywhere the shirt may be off) by the curve and bump.

    Anyway, I have a very extensive medical history starting from the time I was 18 months old. I had cancer which resulted in having chemotherapy and 6000 rads of radiation to the neck and jaw area. As a result, I have 95% hearing loss in my left ear, I have a few paralyzed muscles on the left side of my neck and back causing loss in my necks range of motion and a "floating" left scapula. Additionally, I have a paralyzed vocal chord, the roots to my adult teeth were zapped (and the teeth were removed when I was 14), reduced lung functions, small jaw and throat as the radiation halted and/or slowed growth (I've had doctors actually say that they are surprised I can speak as well as I do), and a restricted airway from having my airways nicked so many times during intubations. Finally, to top everything off, I've been diagnosed with Common Variable Immunodeficiency (CVID) which means an increased risk of infections.

    With all of that being said and done, you can probably understand why I'm skeptical do drink after someone else from the same glass (CVID) and why I tend question the necessity of a single x-ray (due to the added radiation) let alone agreeing to have some sort of surgery performed. Since my airway is small to begin with and webbing from all of the previous intubations, I'm also worried about being nicked anymore as it's already difficult to breath and one vocal chord is already paralyzed which allows for aspiration (allows foods or drinks to get into the lungs).

    So, my question to you all is:
    Where and who (in the U.S.) would you recommend that I look into and/or meet with about getting surgery to correct my scoliosis, taking note of course of all that I mentioned above and knowing that my airway is probably the size of or smaller than a childs (seeing as I'm only 5'2" and about 100lbs to begin with). I need someone who is confident in their ability and good enough to take into consideration these special cases and to take extra caution and/or preventative measures to ensure that the operation goes smoothly.

    Also, generalized question here... How long does it normally take from the time you decide to have surgery to the date of the actual procedure? I'm hoping to get this done fairly soon but if that means going with someone less qualified, I don't think it's worth the risk.

    Sorry for the long post but I feel that it's all quite relevant to finding the right surgeon.
    Thanks!
    Last edited by TechNerd; 10-25-2011 at 10:42 PM.

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    Welcome to the forum

    Where do you live and are you willing to travel?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    May 2011
    Posts
    7
    I live in West Virginia but basically my search radius is anywhere within the continental U.S.

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,958
    Hi...

    The spine surgeon won't be the person intubating you. As long as you have your surgery in a large hospital associated with a good university, you'll probably be in good hands. You might want to check out Khaled Kebaish:

    http://www.hopkinsortho.org/khaled_m...sh_md_msc.html

    I think the average wait for surgery is about 3 months, but there's a huge range.

    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

  5. #5
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213
    Hi TechNerd,

    We live in near eastern panhandle part of West Virginia.

    I did first inquire about Dr. Khaled Kebaish's per Linda's suggestion (she suggested three surgeons, but heard good things about Dr. Kebaish). When I called his assistant told me he didn't do second opinions, but when she learned I had a double curve, she seemed nicer. She did state there was a two month waiting period to go see him. Although I thought he might be the best surgeon in the area, I didn't really hear good things about patient treatment at Johns Hopkins. Surgery is really a two part process: the surgery and the aftercare.

    I choose to go with Dr. Charles Edwards II at Mercy Hospital in Baltimore. Dr. Edwards also was recommended by members of the forum. Mercy has a dedicated Spinal Surgery wing. I had a private room with a couch where my husband could snooze and they also have wifi...so that kept him happy as he is a tech nerd himself.

    Hope this info helps!
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  6. #6
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294
    I sent you a PM re-anesthesia and infection issues.
    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

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