Results 1 to 10 of 10

Thread: would love some feedback

  1. #1
    Join Date
    Apr 2006

    would love some feedback

    Well, I had my consult with Dr. Kebaish at Johns Hopkins. I loved him, he seemed to be extremely knowledgeable and was very nice. His approach also seemed to be very conservative. I did not get the impression that he was just looking for the next patient to slice open.

    I learned a lot and was also surprised to find out that my records from Dupont Institute when I was a child showed my thoracic curve at 35*. My whole life I thought it was 46*, I'm not sure why I remember that number, but it was 25 years ago! My curve now is 60*.

    He said that I will almost certainly need surgery in my lifetime and that it is up to me to have it done now or later. So, now the big question is WHEN? I am 35 years old and in very good shape, physically and emotionally. And, right now is a good time in my life. But, the pain that I have is managed very well and I know my limitations. I am just struggling with having this done when my pain is not dibilitating. Although, if the surgery in inevitable... is younger better?? Please help!

  2. #2
    Join Date
    Jan 2006
    new york
    I wasn't in a lot of pain either, but chose to have the surgery for a few reasons. My body was becoming more disfigured
    I couldn't sit or stand for more than two hours without my lower back bothering me. I wasn't allowed or able to continue high impact exercises.
    My curves were progressing one degree every year and would only continue to progress.
    Hope this helps
    37 y/o female
    60 degree lumbar
    45 degree thoracic
    1st time anterior/posterior surgery May 8th and 10th 2006
    T 5 to S 1

  3. #3
    Join Date
    Oct 2004
    Hey Dorigirl ~
    I like you, have an amazing surgeon who is very knowledgable and conservative and totally honest. He told me that surgery was inevitable but that the timing was totally up to me, I could do it now or wait 10-15 years. He made sure that I was aware of all of the pros and cons of having surgery now and later in life. I was 29 at the time and very active with almost no pain from scoliosis. I knew that I wanted to start a family soon and for me the prospect of having surgery with young children to take care of was not something I wanted, so I decided to have the surgery now (18 months ago actually). The fact that you usually heal a little more quickly when you are younger played a part in my decision.

    The best advice I can give you is to talk openly with your surgeon, family and friends about the pros and cons of surgery now or at a later time in life. Good luck!

  4. #4
    Join Date
    Sep 2003
    Northern California
    Hi Dori...

    I have a little quiz on my website that might help you understand the various elements that need to be considered:


  5. #5
    Join Date
    Jul 2006
    Madison, Wisconsin
    I also have a surgeon that is very cautious. In fact, my PCP said he had never operated on a patient of her's before, but he also gave me the decision of doing the surgery now or later. I am 27 and am also in fairly good shape, but am in considerable pain. Like others who have posted, my husband and I want to start a family in a few years, and I am worried about having the surgery with small children. I also was just at work teaching small children and had to hold one for a few minutes and my back started hurting - that scares me that I couldn't hold my own child without pain.

    So, the question is whether to do it now or later . . . I still haven't completely decided, but everyone (family, friends) seem to tell me it is better to do it now. I've got some mixed responses, but most people seem to think if it is "inevitable" then it is better to do while we're younger.
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

  6. #6
    Join Date
    Jul 2006
    New York

    Wink I know how you feel!

    Hi Dorigirl,

    My name is Mariya and I am 24 years old. I am also going for my surgery in September and still have some questions and doubts about this surgery. I also don't have that much pain and I only get it if I cause it start like taking care of my kids and doing the chores around the house. Lucky me I have a wonderful babysitter and a great husband that take care of everything for me. That is why I am not in much pain anymore and also she would take care of my kids while I'll be recovering.

    I ask myself this question "How long can I go on w/o doing anything?" I also question the type of pain that I have - Is it normal? Does everyone has this pain? But then I realize that it is not so normal in my age to have pain after bathing my kids. I decided to do it now and not wait only because I realize that after speaking to so many people that do know about scoliosis and the friends and family that are in medical fields who tell me that the younger the better chances of correction and recovery. Also, I do not want to be older with worser pain and severe deformity. I think that right now is also the right time because i want to move on with my life and not think about it so much because it is starting to affect me.

    I wish you all the best and I would only suggest to do as much research as possible and to ask all your questions. This makes it easier to make a decision. If you have any other questions please aks!

    Good luck,

  7. #7
    Join Date
    Apr 2005
    Hi Dorigirl,

    that's a tough decision. I'm usually the type to say to wait, but that's when someone is in their twenties or teens. When you reach your thirties, it is good to have surgery b/c you're still young, will get a good correction and heal well. I see the other side of the medal where surgical techniques evolve every year and I had surgery in '97, and my surgeon told me last year that if he would have done it now, it would have been easier and shorter, no hip graft like I had(iliac crest to be exact). I also consider the pressure on the unfused vertebreas that can cause problems later. In my case I had two revision surgeries already and miss some of my flexibility. You have to weigh the pros and cons, and the quiz posted here can be very helpful.

    Good luck.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  8. #8
    Join Date
    Jan 2006
    Well, as you can see from the replies, everyones situation is different. But you must still consider the main questions asked by all:

    Do I want to do this now, at this point in my life?
    Are there other options other than surgery? (Ask your doctor this one or have a second option done by another specialist in the same field.)
    Am I physically and emotionally ready to handle this?
    Do I have a good support group, both from the doctor & staff and family & friends to help me get through this?
    Am I comfortable with the options presented to me?
    Am I in too much pain to wait?
    What kind of life can I expect if I don't do this now?
    How will it effect my family if I do it now?

    These are a few of the questions that do come into play among others. Ultimately your the one making the finally decision so get all questions answered first. Don't be afraid to go for a second option if your not sure. (I know I did get mine 200+ miles away in S.A., Tx.)

    From your post it sounds like your comfortable with the doc, so it's looking at time frame that seems to be foremost on your mind. I had mine when I was in my late teens. I ultimately decided to get it out of the way before I was out into the real world, while I was physically fit and invincible.
    Funny how my times in high school made me feel that way.

  9. #9
    Join Date
    Apr 2006

    Smile thanks for the advice

    I am so thankful to have found this site. Thank you so much for the advice, it helps so much. A decision like this is life changing, just knowing I have on-line friends who have weathered similar storms...well, it gives me strength.

  10. #10
    Join Date
    May 2005
    Wheeling, WV
    Hi Dorigirl,

    You have a decision to make that is extremely difficult. Linda's quiz is a good one. But it is still a tough decision to measure on the "should I" or "shouldn't I", scale.

    We all can only speak from personal experience, and we all know that each one of us is similar, but different. Add the knowledge you gain just from this forum, and it can make it even more confusing. But, you are actually blessed to have this information, literally, at your fingertips.

    If I knew 10 years ago, what I know now, I would have done it then. And then I think about how technology has changed in just 10-20 years. I think no matter what we choose to do in our lives, we will always "second guess" it.
    Don't feel guilty about your fear of the unknown, we all have it. Just do what you think is best for YOU now.

    Just my opinion,

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts