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  • #16
    Overwhelmed

    Our family doctor requested the MRI diagnosis reports from Shriners. We had the test Monday April 12th and still have not heard from the hospital or doctor. I've called for 2 days now and left phone #'s where I could be reached wanting to know if they've found out anything yet. They called and left a message on the answering machine stating the doctor had not looked at the results yet. The case worker said that it showed she had a minor dislocation of a disc.
    I got a copy of the MRI diagnosis report from my family doctor but it doesn't make sense to me. They did a MRI of her lower back wanting a closer look at 2 disc that they said looked herniated. The report findings say 32 degree levoscoliotic curve of the lumbar spine with a 23 degree dextroscoliotic curve of the dorsal spine. There is a 63 degree dorsal kyphosis. There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm. Probable neural large defect at this level(L5)
    The x-ray said there was curvature of 33 thoracic and 41 lumbar. Is that a totally diferent reading than the 32 and 23 listed on the MRI?
    I'm sorry I'm such a pest bothering you all with these questions. BUT this doctor spent 15 minutes with us and hasn't told us anything. Hes not concerned about it BUT I AM.
    I see her everyday and I see the drastic change it is making rapidly. Still waiting for an appt. with the Children's Hospital for our second opinion. If you understand any of the Greek from the MRI report I'd appreciate some insight please. Thank you.

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    • #17
      RONDA

      HERE IS MY UNDERSTANDING OF YOUR MEASUREMENTS BUT PLEASE GET CONFIRMATION FROM OTHERS. MY COMMENTS ARE IN CAPITAL LETTERS. YOUR COMMENTS ARE IN lowercase letters.

      The report findings say 32 degree levoscoliotic (LEVO MEANS LEFT SO THIS IS A LEFT CURVE) curve of the lumbar spine (LOWER SPINE) with a 23 degree dextroscoliotic (DEXTRO MANS RIGHT SO THIS IS A RIGHT CURVE) curve of the dorsal spine (UPPER THORACIC SPINE).

      There is a 63 degree dorsal kyphosis. THIS IS LOOKING AT HER FROM THE SIDE. THERE ARE 3 CURVES WHEN LOOKING FROM THE SIDE.
      - CERVICLE LORDOSIS (NECK - LORDOSIS MEANS CURVE IN),
      - THORACIC KYPHOSIS (UPPER SPINE - KYPHOSIS MEANS CURVE OUT),
      - LUMBAR LORDOSIS (LOWER SPINE - LORDOSIS MEANS CURVE IN).

      I DO NOT KNOW WHETHER 63 DEGREE DORSAL KYPHOSIS IS ABOVE, AT, OR BELOW NORMAL. MY FIRST REACTION IS THAT THIS IS LARGER THAN NORMAL BUT THIS IS PROBABLY A DISCUSSION YOU SHOULD BE HAVING WITH A DOCTOR.

      There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm. Probable neural large defect at this level(L5).
      (I HAVE NO UNDERSTANDING OF THIS)

      The x-ray said there was curvature of 33 thoracic (UPPER SPINE I ASSUME RIGHT CURVE) and 41 lumbar (LOWER SPINE I ASSUME LEFT CURVE).

      Is that a totally different reading than the 32 and 23 listed on the MRI?

      BELOW ARE THE READINGS GROUPED TOGETHER:

      RIGHT THORACIC CURVE
      MRI: 23 DEG VS X-RAY: 33 DEG

      LEFT LUMBAR CURVE
      MRI: 32 DEG VS X-RAY: 41 DEG

      IT LOOKS LIKE THE MRI MEASUREMENTS ARE ABOUT 9-10 DEGREES LESS THAN THE X-RAY MEASUREMENTS (33 VS 23 AND 41 VS 32) WITH THE MRI MEASUREMENTS BEING LESS.

      I ASSUME THE MRI WAS TAKEN LAYING DOWN WHILE THE X-RAYS WERE TAKEN STANDING UP. IS THIS CORRECT? AN 8-10 DEGREE DIFFERENCE BETWEEN STANDING UP AND LAYING DOWN CAN BE NORMAL. WHEN LAYING DOWN FOR THE MRI THERE IS NO LOAD ON THE SPINE. HERE IS A STATEMENT FROM A STUDY REGARDING COBB ANGLE FOR STANDING RADIOGRAPH (X-RAY) VS A NONLOADED SUPINE (LAYING ON BACK) MRI. YOU CAN SEE IT SHOWS A 31 VS 23 DEG DIFFERENCE (8 DEG). VERY SIMILAR TO THE DIFFERENCES YOU ARE SEEING WITH YOUR MEASUREMENTS.

      "Mean Cobb angle for the major curve was 31° on standing radiographs, 23° on nonloaded supine MRI, and ........"

      UNFORTUNATELY YOU PROBABLY NEED TO BE USING THE STANDING X-RAY MEASUREMENTS WHEN MAKING A DECISION ON SCOLIOSIS TREATMENT (33 AND 41 DEG NOT 23 AND 32 DEG).

      THERE MAY BE OTHER FACTORS THAT RESULT IN THE DIFFERENT MEASUREMENTS (I.E. DIFFERENT DOCTORS CAN BE UP TO 10 DEG DIFFERENT IN MEASUREMENTS).

      I HOPE I HELPED BUT PLEASE LOOK TO OTHERS TO EITHER CONFIRM WHAT I HAVE STATED OR CORRECT IT. I HAVE NO MEDICAL TRAINING ON THIS MATTER. THIS IS JUST MY BEST UNDERSTANDING AND EXPLANATION OF THE DIFFERENCES.

      MICHAEL
      Last edited by michael1960; 04-21-2010, 02:38 AM.

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      • #18
        I'm sorry to hear about your daughters diagnosis.

        There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm.

        http://en.wikipedia.org/wiki/Spondylolisthesis

        If you look at the first picture in the article, you will see this. The shift on your daughter is less than that x-ray, her shift is a little larger that 1/2"

        You are gaining experience dealing with Doctors... Sometimes this can be difficult, and takes time. You will need a "scoliosis trained orthopedic", as your daughter is a scoli.

        Surgeons can be extremely busy people, and sometimes take their time responding. I found it best to use e-mail to communicate with the surgeons assistant.

        I'm not a Doctor, just an old scoli.

        Hope this helps
        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA 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

        Comment


        • #19
          Originally posted by titaniumed View Post
          You will need a "scoliosis trained orthopedic", as your daughter is a scoli.
          This.

          You need an "EPOSSS"

          E = experienced
          P = pediatric
          O = orthopedic
          S = surgeon
          S = specializing (in)
          S = scoliosis

          Also, the laying down versus standing explanation From Michael1960 for the different Cobb measurements is probably correct in my opinion but there is a know inter-operator variance in reading of ~ +/- 10* that is probably driven at least in part by choice of different end vertebrae. I don't think it's possible to get 10* difference if lines are carefully drawn from the same vertebrae but that's just my impression.

          Good luck.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #20
            I've said this many times on this forum, but feel that you need to hear it. My dd's scoliosis caused her a LOT of pain prior to surgery and she is strictly an idiopathic case. Most of her pain was in the lower back and especially if she had to stand around or walk for any length of time. It really started bothering her once she passed the 40 deg. mark. I'm sure it was mostly due to muscle fatigue. She also popped and cracked her neck a lot because she unconsciously held her head at an angle due to the shape of the curves. Don't let them tell you it doesn't cause pain, you know your dd better than they do. It almost makes me angry to hear how easily you were dismissed.

            I don't know what to tell you concerning your dd's case except to get several opinions. It's a good way to get a lot of information. We went to 4 surgeons (actually 5 but I don't count the first one because he was so awful) and all of them took a good deal of time talking to us about surgery but my dd was already past 60 and it was a for sure thing. I took a long list of questions with me to each consult; you will get different answers so it's good to compare and see if there's a consensus of opinion.

            As far as bracing, I was told by several surgeons that bracing is not very effective for lumbar curves. In the thoracic region, the ribcage can be pushed upon and forces the spine into alignment, but there is nothing in the lumbar region to accomplish this. Sheena was in the spinecor, it didn't reduce or stop the curves from progressing but it it did help her posture and gave her some support in her lumbar area. She did not tolerate the hard brace well and I don't think it would be a good option for your daughter anyways.

            I also wanted to comment on the MRI, Sheena had one prior to surgery. Her spine was already showing degenerative changes, it doesn't take long. I'm glad we were able to do something while she's young and before she had serious problems in her spine.

            Good luck, I hope your next appointment is better.
            Last edited by Sherie; 04-21-2010, 06:17 PM.

            Comment


            • #21
              Two weeks

              Two weeks today, still no call or letter explaining anything about this MRI. Disgusted!!

              Comment


              • #22
                Dear Ronda,

                I would be disgusted, too. Two weeks is excessive in my opinion. I would make a polite pest out of yourself. Call every other day and explain that you are worried that you have not received the MRI results and would like to have the doctor call you to discuss them as soon as possible. Ask who ever you speak to when you can expect the doctor to call.

                Spondylolisthesis can cause severe back and leg pain, so this could explain your daughter's pain. The first treatment is usually rest from physical activities that would make the pain worse, and anti-inflammatories like Advil. Your family doctor should be able to give basic advice about this--I would call and ask.

                Michael gave you a good explanation for the variety in the curve numbers. When you lie down the force of gravity is removed from the curves, so they lessen when you are laying down.

                Do you have a date for your second opinion appointment? If not, I would call and politely pester them about getting one.

                Let us know how things are going,
                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

                Comment


                • #23
                  Ronda: I share your frustration.

                  Which Shriners Hospital are you working with?

                  We've been trying to get at least what approximate month they plan on scheduling surgery for my daughter so that we can make sure we have enough money for the trip, make arrangements with my daughter's school and make sure we have a house sitter (we have pets).

                  So far we haven't heard anything.
                  Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

                  Comment


                  • #24
                    Just KEEPS getting better!

                    Decided to try the nuisance theory since waiting isn't working. Called yesterday, no call back. Called today and finally called me back. The dr. has STILL not looked at her MRI results. They said last week when I called that he would look at them last Wed. Going on week 3 no answers. Last night her back was hurting so bad she was crying.

                    Comment


                    • #25
                      Ronda: My daughter's primary care physician prescribed Naproxen for her pain and it seems to help quite a bit. A heating pad also helps.

                      I know what you're going through as my daughter's pain is what started us down this road.

                      Three weeks to review the MRI results is a bit excessive. Have you discussed the MRI results with her primary care physician to see if there is any insight he can provide?
                      Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

                      Comment


                      • #26
                        Her primary care dr. is getting her into the children's hospital in our state. She is not pleased at all with the scoliosis dr's opinion. She had ask me to give him her phone number when we went to see him so he could call her and discuss her case. He never took the number or seemed concerned. She called again today wanting to know if I had heard anything yet. She was very angry and said it doesn't matter how busy you are as a physician you make time to look at test you ordered before 3 weeks. Especially when it involves a kid on anti inflammatory meds and pain pills daily.

                        Comment


                        • #27
                          Something new has developed just today. My daughter said it is driving her crazy, she said it feels like her spine is itching. Sounds weird to me but thought maybe some of you had the same symptom. She described it as not the skin itching but seems to be under the skin around the spine area. It's in the lumbar region which is where her biggest curve is. Has anyone else had this feeling and has a Dr. explained what could be the cause?

                          Comment


                          • #28
                            Ronda: I just asked my daughter if she had this symptom and she gave a resounding "Yes!". Although, in her case, this symptom is affecting both her upper and lower back. Her MRI came back clean showing no problems other than the scoliosis.

                            I'm not sure what it means. I always think of itching in relation to an injury as a side effect of the healing process. I don't know how that would relate in this situation.

                            I'm glad to hear that your Dr. is reconsidering her as a candidate for surgery. Due to her age a brace is likely out of the question (same situation for us).

                            The 3 year thing was quite strange. Even with doctors that we disagreed with, they told us to have semi-annual x-rays taken so they could track her progress.
                            Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

                            Comment


                            • #29
                              I guess since your daughter is experiencing it also it must be one of the symptoms. My daughters MRI showed a large neural defect of L5/S1. Now its just a waiting game of when we'll hear from them again. Been over a week since they called and said they wanted to see her again but yet no letter or call about an appt. yet. It took them over 3 weeks to let us know any results of the MRI and only then because I finally after 2 weeks started pestering them to death.

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