Announcement

Collapse
No announcement yet.

Big Day tomorrow

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Big Day tomorrow

    Hi, New to the boards.

    Our dd was diagnosed with Scoliosis a 37 degree thoracic curve with a significant amount of rotation and a compensatory lumbar curve.

    I am sooo scared for her. I noticed her wing was pretruding and her rib cage seemed to stick out a bit while on vacation. Called the Doc as soon as we got home and he confirmed Scoli. From there we went to a Ortho Specialist...he confirmed and diagnosed her with the above diagnosis. We are VERY fortunate to be approved with the Shriners in Salt Lake City, Utah.

    Tomorrow is the big day for us, we meet the Ortho Cheif of Staff to find out How they are going to treat her......Is there anyone out there that is going through this as well??? What does all this mean?

    I am crying inside because I feel so helpless.

    Thank you
    Tags: None
  • #2
    Hi! Welcome to the forums!

    I haven't been on here long but I think because it is later in the evening for a number of the members it might be a good idea to use the search tool and look up shriners. From what I have read people are very pleased with these hospitals.

    I'm from Canada and seriously considering surgery myself (I was diagnosed 11 years ago but refused surgery at the time)

    Best of luck to you!
    I'll be thinking of you and your daughter.
    Keep us posted on how she's doing!
    Age 28
    diagnosed at age 12
    wore a boston brace until age 14
    No surgery, was on "wait and watch" till recently. Got a SpineCor (Jan 27th) to help ease the pain.
    T-curve 73 degrees with severe rotation (curves to the right)
    L-curve 45 degrees with slightly less severe rotation than my T-curve (curves to the left)

    1994 - 5'10" - T-?/L-? (i forget what they really were)
    2006 - 5' 4" - T-56/L-40
    2008/09 - 5' 4" - T-73/L-45

    Comment

    • #3
      SilentTears,

      Welcome to the board. I hope you get this before your appointment today. My 13y.o. daughter had surgery to correct her Scoliosis six months ago, so we've been where you are now.

      Here's some advice:

      1) Take someone with you, if possible. They will throw a lot of info. at you and two people can remember better.
      2) Take a notebook and write down as much as you can.
      3) Take a list of questions.
      4) They will probably mention the word "Risser Scale". That is how they measure whether or not your daughter is skeletally mature.
      5) They may x-ray her hand or her pelvis. That's usually how they measure for skeletal maturity.
      6) If they suggest surgery or if you are not 100% happy with the doctor, get at least one other opinion.

      I hope this helps. You will have a ton of new questions after your appointment but we are all here to help. Good luck.

      Mary Lou

      Comment

      • #4
        Welcome to the board.

        You will be in excellent hands at Shriners in SLC. We go to PCMC in SLC. The orthos work very well together on patients.

        How old is your dd? You will be inundated with information. Try to take this all one step at a time. The measurements may be different, since each different person reading the xray may use a different axis to measure from. Don't be alarmed if the readings are different. That doesn't mean she's going to fall apart today.

        Once you meet with the ortho group, then you can decide on a game plan for her. Again, depending on how old she is, and if she has a congenital malformation in part of the spine (or if the curve is idiopathic), and so many other factors, you will know what to do. There isn't an absolute right way to treat scoliosis. Each patient is different and requires unique care. Shriners in SLC is great about that. It will be a long day, but you will know much more than you do know.

        Let us know what you find out.
        Carmell
        mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

        Comment

        • #5
          Well we just got back from our initial visit with Shriners. Her curve was a 43 degree and they want to be agressive about getting her in a back brace. We go to SLC in 3 weeks for an MRI to check for any abnormalities ( tumors and such) and also an MRI on her brain so the Nuerologist (sp?) will take a peek as well.

          Her spin has 4 sections instead of 5....(that is a blur at this moment)....They also want to check her brain stem as well. Her Scapula is protruding as is her ribs and her spin is twisting inward in two areas. They also noticed her leg bones are growing outward and will address this portion at another time, not scoliosis related, but needs to be adressed.

          We will go back again after the MRI to get her casted for her brace. Dr. is thinking 18-20 hours a day. They also mentioned surgery but they want to wait until her MRI.

          Right now , your all right, I am swimming with information and so tired .....it was a stress filled day! And she is 11 years old.

          Thank you all for you support.....I am overwhelmed but very confident in the Dr. He was soooo nice, as was the PA and the Nurse. They were all GREAT.

          I will remember more soon and share then....for now, I am going to think about it all......
          Last edited by SilentTears; 06-17-2005, 05:42 PM. Reason: forgot to answer a question

          Comment

          • #6
            Thanks for the update. Sounds like you were given a lot of information to process. I'm glad they will be doing an MRI. It may be a good idea to call the hospital and see if a pediatric neurosurgeon can read the actual scan, not just the radiologist's report. Let us know how the MRI goes.

            You mentioned something about her spine having 4 sections instead of 5 - do you know what this means? I'm unclear about what this is referring to.

            The scapula (shoulderblade) and rib issues make sense with a twisting/rotating spine. When the spine curves, it twists and takes the ribs with it. The shoulderblades become uneven and can protrude. Rib humps are common in patients with significant rotations to the curve.

            Good luck with everything. We'll be anxious to hear what they find (or don't find) in the MRI. Keep us posted.
            Carmell
            mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

            Comment

            • #7
              Update

              Well , we are back from SLC Utah Shriners and the news is pretty good! Her MRI's came back normal! Woo Hoo! Her curve is a bit worse then thought....it is 46 degrees. She is in her brace (pink and purple butterflies everywhere) and doing wonderfully! She knows she gets 4 hours a day out of it so she chooses 1 hour in the morning and 3 in the evening. She carefully watches the clock to make sure she gets it on in time. She has slept through every night and is doing well! PRAISE THE LORD!!!!

              Thanks to all of you for your support....I will keep you posted

              Comment

              • #8
                Hi there,
                Glad the scans came back normal. Sounds like your daughter is coping really well with the brace - it's amazing how mature these youngsters can be when it really matters. Good luck!

                Lorrie

                Comment

                • #9
                  SilentTears, hang in there, you're in good hands at Shriners! Be proud of your daughter for wearing the brace so consistently. I know what you mean about her watching the clock for the brace wearing time. My daughter did the same thing. Many kids try to avoid the brace, so be very proud of her! God be with you. Kris

                  Comment

                  • #10
                    Glad to hear things are going well for now. She's doing great! And you are too. Keep up the good work. Keep us posted.
                    Carmell
                    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

                    Comment

                    • #11
                      New for us too

                      I am new to all of this. Last week our 12 year old daughter was diagnosed with scoliosis. She has a 30 degree lumbar curve and a 15 degree thoracic curve? we have been referred to shriner's hospital and am anxiously awaiting her appointment on sept. 30th. i don't know very much about all of this. we need to have a discussion with her, but i don't want to scare her. she is very active in sports and cheerleading and i am afraid she won't be able to do these things. i guess we just need to wait and see. which brace did your daughter end up getting? do you know much about the different braces. would appreciate hearing from you when you have a chance. glad she is doing so good

                      sincerely,

                      kim

                      Comment

                      Previous template Next
                      Working...
                      X