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Thread: 18 seeking possible second surgery advice?!

  1. #1
    Join Date
    Jun 2008
    Location
    Oregon
    Posts
    18

    18 seeking possible second surgery advice?!

    My name is Nikki and I got corrective surgery for my 56 degree lumbar curve in the summer of 2008 when I was fourteen years old. I am now eighteen and dealing with a lot of pain. My upper back is curved to where sometimes it is hard to sit straight and it looks like im hunching when I am not. I have pains that shoot up and down my spine all day. In the very middle of my back there is something that sticks out and rubs me wrong, like it feels uncomfortable and pops and is the root of most of the pain in my back. I also have something where my sternum has scar tissue so it almost looks like I have a little pocket of fat under my boobs. It gives the allusion that my rib cage is popping. I have already spoken to the doctor that has performed the surgery and he has just sent me back to physical therapy every time I bring up the pains that I am experiencing. I know that by having scoliosis I am always going to have SOME pain, but I feel like it is just interrupting my everyday life and making me feel uncomfortable and self conscience. I feel like at such a young age I shouldn't be experiencing THIS much pain. I have read around about possible second surgeries, but I am not sure what to do. Please can anyone give me some advice. My parents dont really know what I am dealing with and I need to know what my options are from here on out. Thank you soooo sooo much.
    -Nikki
    Just keep looking up.

  2. #2
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85
    Please have your parents research Dr. Lawrence Lenke in St. Louis, Missouri. If anyone can help you, he is certainly the guy. You are too young to be in this much pain. There is definitely hope out there. Don't let your doctors take your pain for granted.....there is something that can be done. God bless you sweet one!!!!

  3. #3
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85
    Nikki.....I just looked and see that you are from Oregon. If you private message LindaRacine, she can put you in touch with a doctor on the west coast I am sure. She is the moderator for the forum and she has a wealth of information.

  4. #4
    Join Date
    Mar 2010
    Posts
    2,755
    I would definitely get a second opinion from a new doctor in a different practice (meaning not from the same office). You can look on this website for a list of SRS doctors that specialize in scoliosis. They tend to treat kids a whole lot differently than adults. Unfortunately, non-scoli docs are performing operations on kids, at least that's what I've seen around here where I live. Don't get me wrong, they are orthos, but scoliosis is often not their only "specialty". I just met a girl that was fused in her sophomore year in high school with a 48* curve. The woman who operated on her only got a 20* correction. I'm thinking "what!?" A young girl like that with a typical right thoracic curve should have gotten a better correction than that. She's still in pain, too. Anyway, I'm rambling and don't want to give you bad advice or scare you. Parents like myself are often uninformed of their real options when it comes to treating their kid's scoliosis. I know I was. I was told by a regular ortho not to follow up on my 12 year old with scoliosis. I stupidly listened. Just get a second opinion from a real specialist dealing with adults since you are 18 now. You absolutely shouldn't be living in that much pain.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Nikki,

    I am really sorry to hear of your pain and other problems, and would urge you to get another opinion. I live in Oregon also. I had my surgeries with Dr Robert Hart at OHSU in Portland and have consistently been very happy with him. There is another SRS surgeon in Tualatin, Dr Timothy Keenen, who I saw for a second opinion; Dr Hart told me that he was a very good choice for a second opinion.

    Best of luck. You are so young, and you deserve to be more comfortable and to get some concrete answers about your complaints. Please keep us updated.
    Last edited by leahdragonfly; 07-17-2012 at 08:32 AM. Reason: typo
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #6
    Join Date
    Jun 2008
    Location
    Oregon
    Posts
    18
    Yeah Dr. Keenen was the one that performed the surgery on me. To me he did a fantastic job performing the surgery as far as correcting the degree really well, but I feel like if I were to tell him my problems, like every other time he would just send me to physical therapy again. So maybe I will check out this Dr. Robert? Thank you so much for the advice though.


    Quote Originally Posted by leahdragonfly View Post
    Hi Nikki,

    I am really sorry to hear of your pain and other problems, and would urge you to get another opinion. I live in Oregon also. I had my surgeries with Dr Robert at OHSU in Portland and have consistently been very happy with him. There is another SRS surgeon in Tualatin, Dr Timothy Keenen, who I saw for a second opinion; Dr Hart told me that he was a very good choice for a second opinion.

    Best of luck. You are so young, and you deserve to be more comfortable and to get some concrete answers about your complaints. Please keep us updated.
    Just keep looking up.

  7. #7
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Hi

    Just seen this thread after private messaging you.

    I'd definately get a second opinion and don't let them fob you off when you say you are in pain you need some relief either through possible surgery, medication and/or physiotherapy

    x
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Nikki,

    Apparently I couldn't type accurately yesterday, my surgeon's name is Dr Robert Hart at OHSU Spine Center.

    Good luck,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  9. #9
    Join Date
    Jun 2008
    Location
    Oregon
    Posts
    18
    I have been hearing amazing things about Dr. Hart so I will keep him in mind for a doctor. Thank you everyone for all the support and advice. It is really helping me make an informed and intelligent decision.
    Just keep looking up.

  10. #10
    Join Date
    Nov 2011
    Location
    Utah
    Posts
    59
    I am so sorry you are still in pain. In my opinion how do the Dr.'s no scoliosis doesn't cause pain. Do they have scoliosis? Do they get to live with the pain,uncomfortable feeling, scars,bulges and at such a your age I feel of you. Im not 18 but I had surgery at 15 and just had revision surgery Im 31. And I hate it and I thought I was young. If you ever want to talk or vent or ask me questions feel free to hit me up anytime. I had my second surgery just last January and I am in so much less pain. And the Dr.'s said the same thing to me prior to surgery. That it is going to hurt h=and PT should fix it. Well after 3 Dorctors I found one that believed me and I got my ability to walk back. So I wish you the best. And really if you ever want to bitch and moan. I am here for you. And everyone on this forum is so understanding and nice. Welcome! You have come to the right place.

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