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  • My Daughter just diagnosed

    Hello everyone,
    My Daughter, Caity was just diagnosed with a double (s) curve of her spine. The lumbar area is 45 degrees and the Thorasic is 55 with a twist towards her lungs.
    The Doctor immediately started talking about surgury. My wife and I could not stop crying for the rest of the day and sporadically since. This was on Wed, 9/1/04 when she saw the spine specialist. We are so worried. I am just blown away by it all. Caity is kind of excited because she has always wanted a wheelchair! She may finally get her wish, unfortunately. We have been cruising the web ever since trying to learn as much as we can. It is good to know that there are others who have gone through the surgery and have nothing but good things to say about it, but it is very worrysome. Any input would be greatly appreciated.
    Worried Dad.
    Last edited by Worried Dad; 09-07-2004, 02:18 PM.

  • #2
    Hi Worried Dad...

    I can imagine how stressful it is to receive so much news all at once.

    The odds are that your daughter should have surgery. I'd encourage you to get a second opinion. You can find a list of specialists here:

    http://www.srs.org/locator/

    Please be sure that whoever performs your daughter's surgery does a LOT of these surgeries. It can have a lot of influence on her outcome.

    You might want to check out my website:

    http://www.scoliosislinks.com

    It includes links to the websites which I think will give you the most reliable information.

    Best of luck getting through this. It will be difficult (probably more so for you than your daughter), but I think you'll find that it's not nearly as terrible as you're currently imagining. :-)

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      I can imagine how scary this must all feel, and I think the word surgery is one of the scary words in the English language, regardless of the surgery. And trying to process it all would be one of the hardest things that a parent would have to face, with so many what if's (I remember my Mum said once that when I was first diagnosed she cried the first 24 hours and it took forever to sink in, and the day I had surgery was one of the most difficult days of her life because she knew my life would "change" (but definatly for the better, I have no regrets over having a "fused" back)

      You will find many people on here going thorough similar experiences, which you can "support" each other, cause they uderstand exactly how you are feeling as well as people here who've been there, done that and got the scar to prove it ;-). And who have learnt many things along the way and have an abundance of advice that they are more than happy to share.

      My only advice to add onto what has already been said is to have absolute trust in the surgeon you "work" with, don't be afraid to ask questions (no matter how strange that they might seem), gather as much information as you possibly can.

      I only have one question from reading your post, why is "Caity is kind of excited because she has always wanted a wheelchair. She may finally get her wish, unfortunately",? ..Does she have "other" health considerations such as CP, spina bifida which increase the "risk factor".

      Only reason why I'm asking, is yes there is always a risk factor involved with any surgery involving the spine/spinal cord. But with all the monitors attached/testing beforehand to establish baselines, the chances of becoming "wheelchair bound" is only a very, very small percentage (you'd probably find data on this somewhere).

      But I do remember that before my surgery the surgeon told us that if any of the baselines on the monitors changed during my surgery, he would immediately stop the surgery and close me up., and that he has only ever had to do this twice.

      Best wishes

      Alison
      Last edited by Alison; 09-08-2004, 02:18 AM.

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      • #4
        My Daughter Just diagnosed

        Thanks for the input.
        No, Caity does not have any other health related issues at this point. She has just always liked the idea of getting to roll around in a wheelchair because she gets "tired from walking", as she says.

        Comment


        • #5
          Hi - I can understand how frightening this is, and how sudden this information has been. Please take Linda's suggestions and find at least one other opinion from a PEDIATRIC orthopedist who has extensive experience in dealing with teenagers who have a similar condition.

          You also mentioned that she gets tired when walking... make sure they consider doing an MRI prior to any surgery. You will want to make sure there are no problems with the spinal cord. Leg fatigue can be a symptom of a spinal cord tether. She is old enough that this is not a high risk for her, but you still want to rule out spinal cord issues. Her thoracic curve is rotating which could be restricting her lung function which could also be a reason why she gets tired (not enough lung function). These are things that need to be sorted out, IMHO.

          Remeber, too, that scoliosis is rarely an emergent situation. You should be able to take your time to research and find the right "game plan" for your daughter... including the right timing. There are many here who have walked in similar shoes and can offer experiences to share.
          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


          • #6
            Hi:

            Welcome to the world of the Stunned Scoliosis Parent. Remarkable isn't it how one day you have a perfectly normal healthy child (except for that funny way her shoulder blade sticks out, maybe...) and the next day you have a child with a Major Chronic Health Issue? When my daughter was diagnosed last December, we went from not realising there was anything wrong, to watching her being encased in plaster for a 23/24 brace in four hours. Felt like we had been hit by a truck.

            However, the upside is that you do have time to adjust, and adjustement does happen. While your daughter's curves are higher than most we hear about at diagnosis, as Carmell has pointed out, scoliosis is not a medical emergency, and you'll most likely have some time to get used to the idea. Are they putting your wee girl into a brace to buy some time? (That's what we've got: every few months they check to see if Caitlin's curve has gotten so much worse that it's time to schedule the surgery.) We were appalled at the concept of the brace, but it has turned out to be quite manageable (thank goodness for school uniforms, though).

            If you or your daughter want to make some contact with a big pack of scoli girls, you might wander over to spinekids.com. They have a very active kid-oriented forum. Many of the girls that post there have already had the surgery, and are keen to answer questions and provide general support.

            Hang in there -

            Patricia
            (Scoli Mum from New Zealand)
            Patricia
            Scoli Mum from New Zealand
            Daughter Caitlin's surgery 2nd May 2005
            Posterior fusion T3 - L1

            Comment


            • #7
              Daughter just diagnosed

              Patricia,

              Thanks for the encouagement!
              Our doctor has not mentioned a brace. We asked him and he said her curves are too pronounced.
              Last edited by Worried Dad; 09-13-2004, 07:23 AM.

              Comment


              • #8
                Dear Worried dad,

                All your emotions are so familiar and are exactly what my husband and I have gone thru. (and still are.)
                Those links look worth viewing that Linda sent and although we have a surgery, date I will still explore them.
                Also the advice on feeling completely comfortable as possible about the DR you chose is good advice.
                Funny how everyones little bits of info will help and your tears move on to new decisions.
                It is a D@@@ hard thing to see your child as disfigured and everyday I cry about something too. Thank goodness this site is here..
                Come visit the Adolescent and Teen (under 18) threads.
                good luck and write when you can,Kay
                now 16 yr old daughter
                with worsen 65 degree upper curve
                surgery Nov 3, 04

                Comment


                • #9
                  Daughter just diagnosed

                  Kay,
                  Thanks. Let us know how your daughters surgery goes. We have our next follow up with the spine surgeon on Oct. 11-04. The MRI results show no cause, so now Caity's scoliosis is considered definately idiopathic. I guess that could be a good thing. At least there are no tumors causing it.
                  Ray

                  Comment


                  • #10
                    AC's Mom here: My daughter (13) was diagnosed at 10. She wore a brace for two years that slowed it down, but didn't stop the curve. Last week the xray showed a 76 degree curve and they have referred us for an MRI and surgery. We are finding lots of support at this web site and have checked some books out of the library with lots of info. also. At first she was adamant that she didn't want surgery, but she is coming to realize it's probably for the best. Our doctor informed us that the younger she has the surgery, the quicker the recuperation and even if she's not having a lot of problems now (slight pain) it will probably get much worse later. Best wishes to you!

                    Comment


                    • #11
                      Welcome AC'smom,
                      I am sorry your daughter had to wear the brace with results ending in surgery. But it is good it slowed it down bc you know the fusion area will not grow and at least she is older and taller now.
                      I am surprised she has little pain for such a curve.
                      Is it upper?
                      My daughter's is upper and 3months ago was at 53. She has backpain more everyday and after shopping it really starts hurting her where we have to leave after a hour or more.
                      It's good your daughter is mentally ready for the surgery.
                      Keep in touch ...Kay
                      now 16 yr old daughter
                      with worsen 65 degree upper curve
                      surgery Nov 3, 04

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                      • #12
                        Ray , thanks I will keep in touch about the surgery.
                        I am glad the MRI went well.
                        It is a scary thing to do that and wait.So at least that part is behind you!
                        Take care ...
                        Later,Kay
                        now 16 yr old daughter
                        with worsen 65 degree upper curve
                        surgery Nov 3, 04

                        Comment


                        • #13
                          Thanks Mamakay: My daughter's is an "S" curve. Upper is less (about 40, I think) and it's the lower that's the worse one. We've been blessed that she's done so well, without much discomfort. She's just now (with school starting) complaining of pain - mostly from carrying books. We're still waiting to hear from clinic to schedule MRI and our first visit with surgeon. Shriner's has been helping us to this point - they are great - but understaffed.
                          Melinda

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