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Thread: Few questions...

  1. #1
    Join Date
    May 2011
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    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
    6,951
    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

  7. #7
    Join Date
    May 2010
    Location
    NJ
    Posts
    70
    Hi Tech, I had revision surgery by Dr. K. Kebaish, May and June, he did a great job, and Helene could not be better, I never had to wait long for appt. I went 3 or 4 times to just talk. She told me to call her as many times as I had to,and I did. He is very nice, and so was the Hospital, I got very good care at Johns Hopkins, (not the food), and I know 2 other girls that say the same thing.good luck, you wont make a mistake going with him.

  8. #8
    Join Date
    May 2011
    Posts
    7
    Gah, thanks for the comments and PM's everyone! I got soo caught up in school, I'm just not getting back around to this.

    Anyway, I have been doing some more research and was really interested in seeing Dr. Lenke as he seems experienced, well known, and receives nothing but praise. However, I was reading Doreen's post/blog and noticed she mentioned that he only sees patients with a 70 degree curve or greater... Do you think he'd be willing to make an exception for my case, with the increased risk of infection, the exposure to 6000 rads of radiation at such a young age, and everything else?

    When I had to get my teeth removed and implants put in, I went to Dr. Robert E. Marx which is known for his work with the Hyperbaric Oxygen Champer and Marx Protocol. I feel like De. Lenke is in a similar position when it comes to his expertise and success in dealing with scoliosis.

  9. #9
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,959
    Hi Tech!

    Welcome to the forum.

    If you have digital x-rays, or any other dated digital diagnostic data, thatís a first step to making a search easier since you can call and e-mail. If you have this and all your info in a short dated write-up, itís the best way to get an answer or some sort of direction to someone who can help.

    If you have x-ray films, take a pic with a digital camera.

    In todays world, if you do any diagnostics, x-rays, mri, ctís get your own copy burned to disc. They are your property. I have had films lost years ago, thatís why I say this.

    Best of luck
    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
    Join Date
    Mar 2010
    Posts
    2,755
    I know this doesn't answer your question about which doctor to choose, but when I was in college I had a rolling backpack. It was a real life-saver. It's kind of a no-brainer, but might make your life a little easier until you get your surgery. You might try checking out the SRS website and searching for doctors that way. Then you can find out what hospitals they are affiliated with and go from there. Best wishes!

  11. #11
    Join Date
    May 2011
    Posts
    7
    @titaniumed: Thanks. How recent should the x-rays be? The last ones were taken about 6 months ago, though not much (if any) change had occurred since the ones taken before them. Do they all basically do the X-Rays the same or would some doctors want to do it themselves for some reason? I can get a new set done but I don't want to get them done only to then be asked to do it again in a different manner or at a different location. Limiting my exposure to radiation is a priority, even if it seems like such an insignificant amount.

    @rohrer01: I've thought about that on several occasions but I'm extremely self conscious and have a low self esteem, the last thing I want to do is to do is draw more attention to myself with the use of a rolling backpack, not to mention the additional struggle it would impose upon me when trying to go up a flight of steps. With my restricted airway and reduced lung functions, it's hard enough without have to carry a suit-case shaped box up the steps. Because of everything I've been through up-to this point, I have an high level of pain tolerance. So high in fact that I refuse to take pain relievers unless I absolutely have to because when they wear off, the every-moment pain that I am a custom to seems unbearable for nearly a week afterwards. I appreciate the input but I'd honestly rather suffer the pain and attempt to build up strength and endurance through actually carrying the backpack.
    Last edited by TechNerd; 11-09-2011 at 08:36 AM.

  12. #12
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    Mar 2010
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    2,755
    Quote Originally Posted by TechNerd View Post
    @titaniumed: Thanks. How recent should the x-rays be? The last ones were taken about 6 months ago, though not much (if any) change had occurred since the ones taken before them. Do they all basically do the X-Rays the same or would some doctors want to do it themselves for some reason? I can get a new set done but I don't want to get them done only to then be asked to do it again in a different manner or at a different location. Limiting my exposure to radiation is a priority, even if it seems like such an insignificant amount.

    @rohrer01: I've thought about that on several occasions but I'm extremely self conscious and have a low self esteem, the last thing I want to do is to do is draw more attention to myself with the use of a rolling backpack, not to mention the additional struggle it would impose upon me when trying to go up a flight of steps. With my restricted airway and reduced lung functions, it's hard enough without have to carry a suit-case shaped box up the steps. Because of everything I've been through up-to this point, I have an high level of pain tolerance. So high in fact that I refuse to take pain relievers unless I absolutely have to because when they wear off, the every-moment pain that I am a custom to seems unbearable for nearly a week afterwards. I appreciate the input but I'd honestly rather suffer the pain and attempt to build up strength and endurance through actually carrying the backpack.
    Tech, as far as the x-rays are concerned. I do keep mine on disk, too. However, if I'm seeing a specialist, I will bring my disk but I won't get more x-rays. I let the specialist order what he wants. It cuts down on the exposure and he gets the picture that HE wants.

    As for the backpack thing. I saw plenty of University students with them that didn't seem disabled. I always used the elevators when I had it with me AND I sat in the front row so I didn't have to maneuver the stupid thing to the back of the class. In large auditoriums I just carried it down the steps OR took the elevator down and entered through the side, as I dn't like sitting in the back anyway especially in an auditorium. I can appreciate not wanting to draw attention to yourself and building up endurance, though. I never noticed anyone staring at me because, like I said, many of the students were using them, especially the smaller people that had a lot of books. Another option is to get a locker and take only the books you need for that class. I did this at times, as well. But whatever your personal preference, that's fine. I just know it saved me a lot of pain, as I was already on oxycontin at the time. Best to you, and hope you find an excellent team that can help you safely. :-)

  13. #13
    Join Date
    May 2011
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    7
    Quote Originally Posted by rohrer01 View Post
    I will bring my disk but I won't get more x-rays. I let the specialist order what he wants. It cuts down on the exposure and he gets the picture that HE wants.
    I'm not sure what you mean by the above quotation, it seems rather contradicting. Perhaps I'm reading it wrong, could you please elaborate on how you let him order what he wants but yet refused to get more x-rays? Are you saying that you basically already had anything that they may have asked for on your disk, or?...

    I always use the elevators in buildings too, assuming I'm not in a hurry. However, the campus is on a hillside and while you can follow the roads to get everywhere - it takes twice as long to get around because there are no accessibility ramps at every staircase on campus. In the winter, I try to limit my exposure to harsh cold weather as I tend to get sick very easily (keeping in mind my CVID diagnosis). As for the quantity of people using the wheel-based backpacks, I've been here for about 3 years now and I've only seen 2 of them. One was a girl with an apparent walking disability and the other was a professor with the wheeled backpack as well as a bag on one shoulder and a computer/laptop briefcase in her hand. She certainly had a lot to carry. lol

    Thanks again for your input.

  14. #14
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    Mar 2010
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    What I mean is I keep any and all records of previous x-rays and MRI's on disk. I also have MRI films and x-ray films. I had a bad experience where I needed my old x-rays for comparison and they had been destroyed. The hospital only kept them for seven years. When I see a new specialist I do NOT have x-rays taken right before I go because likely he will want his own. I bring copies of the older ones so that they can use them as a comparison as to whether or not I have progressed. I hope that clarifies things.

    Wow, I'm surprised there aren't more rolly packs around. I understand your sef-consciousness. It's all personal decision. I did find it helpful for getting around campus, though. The drawback was when I actually had to put the stupid thing on to maneuver stairs. They are a little heavier because of the metal frame, although not that much heavier. I don't know how that would feel on your back either.

  15. #15
    Join Date
    May 2011
    Posts
    7
    Ahh, right. Ok, I see what you mean now... The thing is, I don't know which doctor I wish to see and I think getting a first opinion from them via email or something would be helpful in my choosing; with such in mind, should I not send them a copy of the most recent scans available?

    I just don't want to end up driving (or flying) all over the states (although that would be rather fun) to only be disappointed, one after another, with the doctors opinion(s) or their egotistical attitude (as this can lead to false confidence in ones own ability). lol

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