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Thread: I'm new..How long should I wait for surgery?

  1. #16
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Don't let the people at Shriners (or anywhere else) make you feel like you are bothering them, or that you are purposely trying to disrupt their process. YOU are the parent. YOU need to have 100% confidence in the recommendations from the docs so that YOU can make the most informed choices for your child. I'd call another Shriners again and let them know you would like another opinion, from another ortho at another facility. If they don't like it, ask them why you can't bring your daughter for another opinion. You can tell them that you are uncomfortable with the current recommendation and would like to talk to someone else. I know several (many) kids who started at one Shriners and have traveled far to see another facility. I know it can be done. Good luck with that.

    I'm glad to hear the MRI was clear. Good luck with everything! I'll always think of you and your Brayden - very cool!
    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/

  2. #17
    Join Date
    Mar 2006
    Location
    Cincinnati
    Posts
    42
    Niki-
    My daughter is 15. Her surgery is this Friday, April 7th. Please keep her in your prayers. The stress and anticipation is really tough.
    Kate

  3. #18
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    My daughter also 15, I will definatly pray for her. I will pray for you as well, I know sometimes it is more frightening as a parent to know what your child is going to be going through. What doctor is doing the surgery? Do you know anything about Dr. Wall that practices there? I got a return email from him to call and make an appt. Niki

  4. #19
    Join Date
    Mar 2006
    Location
    Cincinnati
    Posts
    42
    Niki,
    Dr. Wall is doing Breanne's surgery. We started with Dr. Crawford 3yrs ago but switched after a year to Dr. Wall. I would suggest making an appointment with him. We've been pleased and have spoken to other parents who have had Dr. Wall as their chil's surgeon. All good feedback. I promise to share more with you later. I'm so busy today. We'll keep you posted with how things go. Thanks for your prayers!

    Kate

  5. #20
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Smile

    My son's surgeon considers surgery around 45* to 50*. He also judges when surgery should be schudualed, by how fast the curve is progressing. Once he diagonosed scoliosis, he wanted to see my son every three months, to keep a close eye on his curve, and any progression. He did end up with surgery, by the time we got him into surgery, his curve was about 57*, with a large rib hump. The surgery corrected the rib hump by about half, and his spine was straightened to 13*. He stands so tall and straight, it's just unbelieveable what they can do nowadays.
    I hope you have made your daughter another appointment with a different pediatric orthopaedic. By everything you have posted thus far, it sounds like you should. Remember, your the parent, and you know your child better than anyone. If you feel she is in need of surgery, then you should go with your instincts and try to make that possible!!!!
    But it is also very important that you find a surgeon whom you can put all your trust into. For there is no harder time in a parent life than the day you have to walk away and leave your child into the hands of the doctors who will be doing such a major surgery on her. Take it from me, my son went through scoliosis surgery twice, and it was so hard, I just wanted to go in there with him, if for no other reason than to just watch over him myself. Trust, trust, trust. It is so very important, believe me.
    Good luck in your search.
    LeaEvelyn

  6. #21
    Join Date
    Oct 2005
    Location
    Grand Rapids, MI
    Posts
    313

    Some dr's don't believe in scoliosis surgery

    Dear NcKim13,

    I have been to doctors all my life (age 46) with a major double curve and all of them up to last year told me that there was nothing that could be done for it!!! This even for a T65 L65 curve! So there is a major lack of knowledge among medical doctors as to what treatment is actually being done to correct scoliosis.

    Finally, last year, after being disabled from working due to pain from it, I INSISTED on going to a scoliosis specialist who told me that YES, I was a candidate for surgery and couldn't believe that I had never been referred for it before.

    Please don't be satisfied with this Shriner's dr. who is telling you it doesn't need to be treated. Even as an adult, my curves are increasing one degree per year. In 40 years, without treatment, your daughter's curve may be 90 degrees and she will be disabled and in major pain and almost too old for surgery. So right now is the time for her to get the surgery--while she is still on your insurance and doesn't have the responsibility of a family or supporting herself.

    You may have to be assertive with SHriner's about getting a referral to a scoliosis doctor. Make sure it is an orthopedic dr. who specializes in scoliosis surgery or you will get the same run-around.

    Good luck,

    Deb

  7. #22
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    My daughter has an appt. May 1st with a Dr that specializes in scoliosis at the Children's hospital in Cincinnati OH. I have been reading alot about other people having pain with scoliosis her present Dr. would always tell my daughter that scoliosis did not cause pain. I would get so upset, why would she lie about something like that. The way her spine is twisted I don't know how she couldn't have pain ...... she is very active. Thanks to everyone I appreciate everyones input. Really this has really been a healing process for me. It is so hard watching my child going through this, and surgery really scares me. I know in my heart it is what she needs.

  8. #23
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Talking

    Congradulations on finding a scoliosis specialist!!! I wish you the best of luck with your appointment in May. Hope it turnes out that you like this doctor!!! Take Care,
    LeaEvelyn

  9. #24
    Join Date
    Apr 2006
    Posts
    20

    I'm new..How long should I wait for surgery?

    My 14 y.o. daughter just had surgery 9 days ago for a 56 degree curve as well as a rib hump on the right side. We are very pleased with the results and her recovery. I would get a 2nd opinion if I were you. The first surgeon we saw when she was at 33* did not do surgery and sent us to someone that specialized just in pediatrics and scoliosis. She wore a brace for 11 months which did not help. She feel and looks so good. Good luck with your decision.

  10. #25
    Join Date
    Mar 2006
    Location
    Washington WV
    Posts
    19
    where was your daughters surgery done?

  11. #26
    Join Date
    Feb 2009
    Posts
    1
    I know this is a very old thread (2006). But I had to respond due to reading about you taking your daughter to Morgantown, WV to Dr. Eric Jones.

    I took my son there about 4-5 years ago when his peds doctor noticed his scolosis. It was 11 percent then. I loved Dr. Jones. He explained to my son everything about scolosis and gave him a book of info. He told him IF his scolosis ever got bad, which he said in boys it rarely does, then there was braces, surgery, etc. He said for now we will just watch it.

    I took him back every 6 months. Then, 1 1/2 years ago he took a huge growth spurt and I started noticing his shoulder blade, and rib hump. I called to make our appointment, but Dr. Jones had left!
    They told me that since Josh was a child that didn't have any suggestions for me because Dr. Jones went to Michigan and WV had no pediatric ortho doctors at all. I said who is in charge of ortho there?
    They told me Dr. John France. His speciality was also scolosis, but didn't do pediatrics. I am a very PERSISTANT person.
    They said Dr. France was examining each former patient of Dr. Jones and then he would make a decision as to whether he would see them or be able to help them.

    I knew he could help him. He is the best. I mean the man is an awesome surgeon and the head of the Department there at Ruby Memorial.

    Finally they said IF I got new scoloie x rays they would make me an appointment.
    It will be one year Jan 20 that my then 12 year old seen him. The curve at that time had gone to 44 percent. It was to late for a brace, but my son decided on his own that he would not wear one and he was upfront with Dr. France. I mean totally up front. Dr. France said ok, buddy...we will see you in July and then we will decide about surgery. Josh said ok...he told Josh to do what you want....live your life and I will see ya in 6 months bud.

    In July Dr. France told him it was time for the surgery. To pick a time within 4-6 months as to when we wanted to do it. Josh decided November would be the best. That way half the school he would miss would be Thanksgiving and Christmas breaks and really only 3-4 other weeks.

    He had his surgery 2 weeks ago. Nov. 23 and just yesterday he said. This is the best thing I ever did.

    I laughed because just last week he was bawlin his eyes out because his incesion was itching "to death" as he said. He didn't cry that much about the pain right after surgery as he did with that itching.

    The second day was his worst, he took one little crying spell and said "why couldn't I be normal?" It broke my heart but I couldn't let him see me cry. I stood up and said "excuse me young man, exactly WHAT IS normal?" We then discussed many other things and before long the pain pills kicked in and he was find again.

    As for Dr. France. The man is awesome. Orginally he said 4 hours for the surgery and 2 1/2 maybe 3 hours he was calling us up to come see our little man. He said he did wondeful. He came out of anesthia better than most adults. We were running down the hallway with him because he is a busy man and had 3 other surgery's to do and he was saying I got him nice and straight and he is a heck of a kid.

    He went for his 2 week follow up today. They did high fives and the doctor was amazed at everything Josh can do. He told him if he wanted to go to school a day or 2 a week it was fine. Not to get to physcial and he would see him in a month. Do x rays and then compare the whole shabang from start to finish.

    I was so upset when I heard Dr. Jones had left, but now I wonder if things aren't suppose to happen for a reason.
    Dr. Jones may have tried to force the brace issue which being a boy that was not going to happen.

    Josh lived his life normally. He throws a 16 pound bowling ball and took first place in states. he golfed weekly.

    He is anxious to get back to doing both of those.

    Maybe Dr.Jones was ment to go somewhere else.

    I hope by now you found a great doctor to work with your daughter.

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