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  • Latest X-ray and Concerns

    Here's the x-ray I had done on December 7, 2007. I went to my surgeon yesterday and it moved 3 degrees in 7 months, so I'm having surgery in May. I'm really worried about having this surgery, mainly because I'm not sure if I'm standing right for my x-rays. As shown in my x-ray, I lean to the side, but I still have a thoracic curve. When I breathe in I move to the side and I often catch myself standing like this because it's often more comfortable. I started standing like that for my x-rays, but I don't know if I should attempt to stand up straight. My doctor said whatever is more natural and honestly, it feels more natural for me to stand to the side, so I guess I answered my own question. I just don't want to have this surgery if I shouldn't, but according to my signature, I've progressed a lot in the past 9 years.

    I'm also slightly worried about my surgeon. I REALLY like him. He's by far the nicest and most honest doctor I've ever had for any type of medical condition. He recently left a practice because he didn't think the patients were treated properly so now he is with another health system. Should I be concerned about his? Also, he's 38. My mom and my friend are really uneasy about him being so young. Should I call the office and ask for names of other patients who have had this surgery done? I did hear of one fusion he did that went really well.

    Maybe I shouldn't be worried because I feel he's the one I should go to for my surgery, but since others are questioning him it makes me second guess myself. Any suggestions?

    X-ray
    Last edited by briarrose; 12-20-2007, 08:48 AM.
    Chemist, 30

    1998- 18 degrees
    2003- 33 degrees
    2005- 37 degrees
    2006- 44 degrees
    May 2007- 47 degrees
    December 2007 - 50 degrees X-ray

    Surgery May 27, 2008
    Fused T1 to L2
    Curve corrected to 15 degrees X-ray

  • #2
    You have to feel confindent with your doctor. Check into his background and see where he trained and if he did any extra training in scoliosis. We came across a doctor who proclaimed himself a scoliosis specialist and I knew more about it than him. He made a major mistake in diagnosing my daughter, so we went else where. This site is a great place to find out about doctors. We found a great doctor for my daughter. Unfortunately, he retired soon after she was finished with all her followup appointments. Now if she ever needs to go back, she will have to go to my doctor.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

    Comment


    • #3
      Briarrose,

      If you are second guessing your decision about your surgeon and/or your choice to have surgery, you might want to think about getting a second opinion (maybe even a third and fourth opinion). At the very least, it will give you something to compare your current doc to.

      I went for a second opinion and found this surgeon REPULSIVE. He told me scoliosis did not cause pain and if I wanted the surgery then I was getting it for cosmesis (his made up word for cosmetic reasons), even though that was the least of my worries. He was rude, judgmental, and unresponsive to my concerns. While the appointment itself was an awful experience, it confirmed in my mind that the surgeon who gave me my "first" opinion was right for me.

      Good luck!
      2000 34*L/39*T
      2007 44*L/53*T

      12.3.07 Posterior Spinal Fusion T4-T12
      (initially planned T4-L1)
      12.18.07 11*L/10*T

      23 years old

      Comment


      • #4
        Hello briarrose-

        I can tell you that I took a HUGE leap of faith. I went to a world renown doctor and was told there was an 8 month waiting surgical list if i wanted him, or I could meet with his new partner and have surgery in about 6 weeks. My doctor has not even been licensed for a year and was brand new. he had done some impressive fellowship work, but he was so new!! My sister had a screaming runaway when i told her about my options and said to not even consider anyone but the older, more experienced one. My husband and I met the new doctor and felt like the older one would have never jeopardized his practice by bringing in a second rate surgeon, therefore we decided to trust him and let him do it. I did not tell my elderly mother about what was going on because i knew she would have wigged out. But, i want you to know, we have been thrilled! your doctor is the same age as mine and he is young enough almost, to be my son. His skills amaze me every day when I look in the mirror. I joke with him that his favorite toys must have been Lego blocks.
        i was concerned that he had only done young patients and had little experience with older ones like me. What sold me, was when he said the older patients kept him awake nights because he worried about them. I knew he would stick with me and really cared. Like i said, my leap of faith paid off very well. I wish you the best of luck and advise you to keep an open mind. I am 6 months ahead in my recovery by going with the new doctor and like I said, I am thrilled with the level of care the "youngster" has given me. He stunned everyone by not putting me in a brace and while recovering during the summer, I was grateful. let us know what you decide...
        Lisa age 47
        T curve 69 degrees
        L curve 40 degrees more or less - compensatory
        fused to from T-3 to sacrum
        anterior and posterior surgeries completed June 1, 2007
        pushing hard in recovery !!

        Comment


        • #5
          Honey, if it’s more comfortable for you to lean to the side at age 25, just think how much more you’ll be leaning at age 50. Your youth is to your advantage, and as you can see from many of the posts here from those who have undergone surgery, there are lots of successful outcomes, even in older adults.

          I would not be concerned that your surgeon is too young at 38. Dr. Sanjay Gupta who is CNN’s chief medical correspondent and a successful practicing neurosurgeon is 37. But I would definitely ask for patient referrals. They can give you a fair assessment of their experience and results.

          Good luck to you.

          Chris

          Comment


          • #6
            Briarrose, I agree with Chris WBS that you should ask for patient referrals. You should also feel free to ask this guy how many fusions he does a month and what his track record is regarding serious complications (including paralysis). I personally don't feel a doc's personality or bedside manner is as important as his reputation or track record. I would also suggest, since you have time, seeking at least one more opinion while keeping your surgery date with this guy. You can always change your mind.

            Also -- try not to second-guess your x-rays; it looks like you've got an impressive curve there. Better to get a second professional opinion than to drive yourself nuts (and I know all about driving myself nuts, believe me ).
            Chris
            A/P fusion on June 19, 2007 at age 52; T10-L5
            Pre-op thoracolumbar curve: 70 degrees
            Post-op curve: 12 degrees
            Dr. Boachie-adjei, HSS, New York

            Comment


            • #7
              Originally posted by briarrose
              I'm also slightly worried about my surgeon. I REALLY like him. He's by far the nicest and most honest doctor I've ever had for any type of medical condition. He recently left a practice because he didn't think the patients were treated properly so now he is with another health system. Should I be concerned about his? Also, he's 38. My mom and my friend are really uneasy about him being so young. Should I call the office and ask for names of other patients who have had this surgery done? I did hear of one fusion he did that went really well.
              I completely agree with everything posted by other thus far. Get a 2nd, 3rd, 4th (or however many it takes) until you're comfortable before you agree to anything.

              While the situation isn't an emergency, you've demonstrated some pretty substantial curve progression in adulthood .... and, unfortunately, that makes continued progression more likely.

              If you haven't read it, and you're looking at surgery, I'd suggest you order a book called "Scoliosis Surgery: The Definitive Patient's Reference" by David K. Wolpert (3rd Edition). It's well-written, informative, easy to understand - and available online from both Amazon and B&N (I was completely unsuccessful locating it in a store). My doctor recommended I read it before I made a final decision on surgery, and I'll be forever grateful he did.

              And regarding my doctor (Darrell S. Hanson, MD) ... He's also 38, an SRS (Scoliosis Research Society) member, and did his fellowship under Dr. Lawrence Lenke. His qualifications and competency are far more important to me than his age.

              If your doctor isn't a member of the SRS, I'd strongly suggest your other opinions are procured from SRS surgeons (you can locate member surgeons at http://srs.org/locator/ ). While it doesn't guarantee they're any better than your doctor, it does mean they devote at least 20% of their practice to spinal deformities.

              Take your time, hon, and gather all the facts you can before making a decision.

              Best of luck to you.

              Regards,
              Pam
              Fusion is NOT the end of the world.
              AIDS Walk Houston 2008 5K @ 33 days post op!


              41, dx'd JIS & Boston braced @ 10
              Pre-op ±53°, Post-op < 20°
              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


              VIEW MY X-RAYS
              EMAIL ME

              Comment


              • #8
                Wow! Thank you all so much for your replies. I really appreciate it. I decided today to get a second opinion regarding surgery. I've actually been to a total of 4 spine surgeons, but my current doctor is the only one that has taken me seriously. My doctor is a member of the Scoliosis Research Society so that's a plus. It seems like younger doctors are rather common so that makes me feel a lot better too.

                I don't know if I'll ever feel 100% confident about having this surgery done. I'm really afraid of being paralyzed or dying. I know it's all in God's hands, but I still worry.

                My current doctor is Christian Fras at Mainline Health (PA). I'm going to get my second opinion from Dr. Albert at the Rothman Institute. I had a REALLY bad experience with another doctor at that place, but I decided to suck it up and try this doctor. Has anyone ever been to either of these doctors?

                I'm also going to call my doctor's office and ask for referrals. I should have done that yesterday, but I didn't think of it.

                Thanks again!

                Shell
                Chemist, 30

                1998- 18 degrees
                2003- 33 degrees
                2005- 37 degrees
                2006- 44 degrees
                May 2007- 47 degrees
                December 2007 - 50 degrees X-ray

                Surgery May 27, 2008
                Fused T1 to L2
                Curve corrected to 15 degrees X-ray

                Comment


                • #9
                  The decision process is a scary thing, Shell ... you aren't alone, and you'll find many wonderful, supportive friends here - some pre-surgery, some post.

                  While risks always exist, life is full of risks - and all you can do is *minimize* your risk. You can't dwell on paralysis, death, or other icky "what if's" (easier said than done, I know). Arm yourself with knowledge, and use it as your most powerful tool.

                  Unchecked, rampant fear can consume you: I had to put it all in perspective when my son joined the Marines. His chances of grievous bodily harm - and mine in surgery - are *still* less each day than driving in Houston. It's all relative.

                  I know (at least in my case, for certain), and from what I've seen others post here, the terror seems to abate once you decide. You didn't say if you have pain, but I KNOW that made MY choice much easier ...

                  Trust your instincts, hon ... you're doing all the right things to find what's best for you.

                  (and don't forget Wolpert's book ... it is SUCH a great resource!)

                  Best regards,
                  Pam
                  Fusion is NOT the end of the world.
                  AIDS Walk Houston 2008 5K @ 33 days post op!


                  41, dx'd JIS & Boston braced @ 10
                  Pre-op ±53°, Post-op < 20°
                  Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                  VIEW MY X-RAYS
                  EMAIL ME

                  Comment


                  • #10
                    Thanks for your response Pam. I thought our curves looked similar from the x-rays. I ordered that book today. Thanks for reminding me of it. I've heard things that people shouldn't read it because it will turn you away from surgery, but I'm going to read it anyway.

                    I am in pretty significant pain and have been for 5 years. It's awful, especially when I'm at work or school and I can't leave to lay down or do something to help alleviate it.

                    You're very right about the risks thing. I need to put it all into perspective. I've known for years that I was going to eventually have to have surgery but now that it's nearing, I'm really scared. I want to have it done though because I'm tired of living in pain and having such a condensed torso since my spine is continually collapsing.

                    My new worry is that when I get the second opinion, the doctor is going to say that the curves are not as bad as my current doctor says they are and I don't need surgery. I'll cross that bridge when I get there.

                    Thanks for listening and for your reponse. I appreciate it.

                    Shell
                    Chemist, 30

                    1998- 18 degrees
                    2003- 33 degrees
                    2005- 37 degrees
                    2006- 44 degrees
                    May 2007- 47 degrees
                    December 2007 - 50 degrees X-ray

                    Surgery May 27, 2008
                    Fused T1 to L2
                    Curve corrected to 15 degrees X-ray

                    Comment


                    • #11
                      Originally posted by briarrose
                      I'm really afraid of being paralyzed or dying. I know it's all in God's hands, but I still worry. Shell
                      Shell,

                      I am a firm believer in the power of prayer. Yes, it is all in God’s hands. Many here have commented how thrilled they are to have found this site. My faith tells me that they were guided here as was I. Many have found answers and insight. When it became clear to me that surgery is inevitable, I prayed in earnest asking God to lead me to the doctor who can best treat me, and believe it or not, I was sent a sign showing me who that doctor is. Pray, hope, and do not worry. Worry is useless.

                      Chris

                      Comment


                      • #12
                        I too had that sideways shift and lean. I knew it wasn't just to get comfortable when I tried to stand straight (looking in a mirror) and found it almost impossible. My 45 degree curve at your age progressed to about 75 degrees by the time I was 40 and so I had the surgery (nearly two years now!!). I no longer lean over at all.

                        I know this is a really hard decision and you feel like you are taking a gamble on your future, but I can honestly say that I am glad I have had it done. My future is looking much brighter - remember, the correction they can give you should be permanent but curves often progress with time. In addition, my progression started to speed up because my sideways shift made gravity more of an issue.
                        Sadly I still get pain, but at my age my spine was very stiff and they only managed to get a 50% correction. I also have Spina Bifida which complicates things.

                        As to your surgeon, if you get chance have a second opinion as its nice to feel comfortable about the person who will be operating on you. Here in the UK with the National Health Service you get who you are given!

                        Good luck with it all.

                        PS The Dave Wolpert book is great!
                        Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
                        Post op 30(T)/33(L)
                        http://warpedwoman.blogspot.com/

                        Comment


                        • #13
                          You are all so helpful! I appreciate all the comments and feedback.

                          Chris - Thanks for your uplifting words. For some reason I haven't been praying about finding the right doctor. I've been praying about the surgery itself and I know I should have it done. Thanks again. I know God will take care of everything.

                          Pips - That's crazy that your curve increased to 75 degrees. I'm guessing that's where I'll be in 15 years if I don't get this taken care of. My side shift is so crazy to me. My left shoulder almost lines up with my right hip! I also have shrunk half an inch in the last year. Your post was very encouraging. I'm starting to feel more confident about having this surgery done. Thanks!

                          Several people mentioned checking into a doctors background. How would I go about doing that?

                          Shell
                          Chemist, 30

                          1998- 18 degrees
                          2003- 33 degrees
                          2005- 37 degrees
                          2006- 44 degrees
                          May 2007- 47 degrees
                          December 2007 - 50 degrees X-ray

                          Surgery May 27, 2008
                          Fused T1 to L2
                          Curve corrected to 15 degrees X-ray

                          Comment

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