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    My daughter Justine is 12 years old (13 next month) and was recently diagnoised with Scoliosis. To start at the begining we have to go back to August, her pediatrician said she had a touch of scoliosis and to keep an eye on it. In February we noticed that Justine seemed uneven and imediatly booked an apointment. We were reffered to All Childrens in St, Petersburg Florida. Justine was Diagnosed with a T of 49 and a L of 57. We were stunned we had prepared Justine for a brace mentally and now we were being told that this was progressing rapidly and a brace would not help. We are now facing surgery. I'm scared but can not show it for Justine's sake. I'm shaking and crying at this moment because I don't know if this is the best choice. I wish I could do it for her!

  • #2
    hang in there...

    Dear Angelique,

    First of all, I am so sorry to hear that Justine's scoliosis is progressing rapidly. I can understand what you are going through. My daughter (turning 13 next week) is scheduled for a surgery in June.

    Surgery is really frightening, particularly when you are making the decision for your child. However, as one of the other moms (Carmell) on this Board reminded me once, the best we can do is get as much information as possible and take one day at a time.

    Have you sought multiple opinions for your daughter? I found that to be very helpful before feeling comfortable with the idea of a surgery. There may be other people on this Board from Florida who may be able to direct you to other surgeons/consultants.

    Many hugs,

    Sam

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    • #3
      Hi Angelique,

      Welcome. This is a scary time for you and your daughter. However, like Sam suggested, you have time to research and find the right plan for her. Scoliosis is rarely an emergency situation. Please make sure you have another opinion (at least one) before agreeing to surgery. Justine is very young, and probably not skeletally mature. You need to be absolute certain that surgery is necessary before making that decision. There are many variables involved. Being able to separate the pros and cons is a tough job, but you will do fine.

      Feel free to ask questions. Lots of families here are in various stages of scoliosis treatment. They can share experiences and offer support. You are not alone. You are in great company.

      Good luck and I look forward to reading updates from you.
      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/

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      • #4
        I'm sorry too, I know exactly how you feel. My daughter, 14, has curves almost identical to your daughters. I've had several months to get used to the idea of surgery, but I'm still struggling. I have done my pros and cons and feel surgery is the best thing we can do for our daughter. We have been to 3 doctors and had a 4th opinion from another dr. that we sent her xrays to. They all agreed on the fusion levels, in my daughter's case, she will be fused from T4-L4, it's a long fusion and I was really scared when I first heard this, but after finding out the reason why, it made sense. I mailed her xrays(digital on cd) and photos with a short letter to Dr. Harry Shufflebarger at Miami Childrens Hosp., he's a very prominent physician in this field and he has very kindly responded to all my questions. If you're close to Miami, it would be worth seeing him for his opinion. We are waiting for a surgery date at Texas Scottish Rite for this summer. Take care, if I can help in anyway, I'd be glad to.

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        • #5
          Thank You!

          Thank you all for your insight, cyber hugs and most importantly your knowledge. We had thought about a second opinion (which I know intend to do!) but in our shell shocked, rock the world, this can't be happening state, I guess we over looked the possability that another doc would give us a different opinion or solidify the one we already have.

          We did do our research and the practice at All Childrens is the No.1 Orthopaedics and Scoliosis Surgery center in southern Florida. (We are in Tampa Bay.)

          We saw Dr. Hahn on March 8th (that's when our world came screching to a halt!) Justine then went through a series of M.R.I.'S this week and we have an apointment next week March 22nd to review these and discuss surgery and dates. IS IT MOVING TO FAST?

          We do have a Shriners over in Tampa should I call them about a second opinion?
          Could we look out of state for a practice?

          THANK YOU! THANK YOU!

          Angelique

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          • #6
            We had considered going out of town but now I feel we have some very good doctors right here in Texas and travelling out of state would just be more trouble, although, if I felt it was necessary I would still do it.

            As far as rushing, I see people who schedule surgery right away with a 40 deg curve and others who wait years, so I guess that's up to the individual. We've known about my daughter's scoliosis for about 1.5 years and we've tried a gamut of treatments, obviously nothing worked. So I've had some time to get used to the idea. Over the last several months I've been thinking of surgery and researching and I feel we are ready to go down that road. Are you scheduling surgery for the summer? If you wait til then, maybe you'll be more prepared. I asked the doctor if there was any problems waiting, what if it goes to 70 deg., he said it wouldn't make that much of a difference. I think you and your daughter need to be emotionally ready, I know for myself, I had to make sure this was the right decision for my daughter's future and I could live with it and in the end, that's the conclusion I've come to. I'm going to send you a PM.

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