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  1. #31
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    Unhappy Increasing pain...

    My daughter has had steadily increasing pain near her biggest and lowest curve (I guess that's the lumbar??) for about 2 or 3 weeks now, I called Shriners and now they want to see her next week instead of May. I am already a pretty neurotic person to begin with but, I feel so bad for her, but I don't dare tell her, she'll say quit it mom. Who knows it may not be anything big, but I can't say it's nothing anymore.
    Last edited by annm; 03-22-2012 at 05:24 PM.

  2. #32
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    Quote Originally Posted by annm View Post
    My daughter has had steadily increasing pain near her biggest and lowest curve (I guess that the lumbar??) for about 2 or 3 weeks now, I called Shriners and now they want to see her next week instead of May. I am already a pretty neurotic person to begin with but, I feel so bad for her, but I don't dare tell her, she'll say quit it mom. Who knows it may not be anything big, but I can't say it's nothing anymore.
    Knowledge is power. You need to know what is going on with the curve.

    I asked about delaying surgery from March until June for the first kid but was told no. I later realized why... had we delayed, the curve would have been north of 70* instead of the 58* it was at surgery. I am not sure she would have gotten the correction she did both in terms of straightening and de-rotation had we waited. By the time the second kid was surgical, I knew her curve was moving quickly also so I didn't even ask to move it from October to December.

    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."

  3. #33
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    Unhappy No support...

    Still overwhelmed, my parents won't believe that my daughter's scoliosis has progressed and thatwhen I called her doctor asked us to come in sooner than her May appointment, and has recommended surgery. As her only parent...I am the one she tells, I'm the one who massages her back every night of her life, I'm the one the school calls to as to give her an advil to get her through the rest of the day. Her pain is very real, and her curves are very real. Why do I feel like we are all alone dealing with this. We have started therapy because we can't seem to wrap our brains around everything that is hitting us. I can't imagine not believing her. I will never let her do this alone. Sorry just needed to get that out...
    frustrated and depressed

  4. #34
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    Quote Originally Posted by annm View Post
    Still overwhelmed, my parents won't believe that my daughter's scoliosis has progressed and thatwhen I called her doctor asked us to come in sooner than her May appointment, and has recommended surgery
    Hi there. I'm trying to understand what you wrote here. Your parents won't believe that your daughter's scoliosis has progressed? On what do that base this denial on? Do they think the surgeon is lying? Do they think it is impossible for scoliosis to progress? I just can't follow what you are saying.

    Do your parent have any training? Have they seen the radiographs? Why are they giving you advice when they have no relevant training whatsoever? That is NOT helping. Would they also expound on particle physics with no training? Wouldn't that be equally worthless? You should only be talking to people with appropriate training in this medical issue. That would be the experienced pediatric orthopedic surgeons specializing in scoliosis.

    As her only parent...I am the one she tells, I'm the one who massages her back every night of her life, I'm the one the school calls to as to give her an advil to get her through the rest of the day. Her pain is very real, and her curves are very real. Why do I feel like we are all alone dealing with this. We have started therapy because we can't seem to wrap our brains around everything that is hitting us. I can't imagine not believing her. I will never let her do this alone. Sorry just needed to get that out...
    frustrated and depressed
    Do your parents think your daughter is lying? It is beyond obvious she is not lying. You need to continue supporting her as you have. You are a good Mommy. You are not alone. We are here.
    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."

  5. #35
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    Quote Originally Posted by Pooka1 View Post
    Hi there. I'm trying to understand what you wrote here. Your parents won't believe that your daughter's scoliosis has progressed? On what do that base this denial on? Do they think the surgeon is lying? Do they think it is impossible for scoliosis to progress? I just can't follow what you are saying.

    Do your parent have any training? Have they seen the radiographs? Why are they giving you advice when they have no relevant training whatsoever? That is NOT helping. Would they also expound on particle physics with no training? Wouldn't that be equally worthless? You should only be talking to people with appropriate training in this medical issue. That would be the experienced pediatric orthopedic surgeons specializing in scoliosis.



    Do your parents think your daughter is lying? It is beyond obvious she is not lying. You need to continue supporting her as you have. You are a good Mommy. You are not alone. We are here.


    thank you...just getting frustrated at the lack of support I have for her, banging my head aginst a wall...they are in denial, because facing it hurts their feelings, it's totally personal.

  6. #36
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    Quote Originally Posted by annm View Post
    thank you...just getting frustrated at the lack of support I have for her, banging my head against a wall...they are in denial, because facing it hurts their feelings, it's totally personal.
    Okay that's a reason but not an excuse. Key difference.

    We have other people coming on here with untrained family members giving them grief over what the surgeons are telling them. They are scared. That is NOT helpful. Emotion does not trump medicine and science.

    The most important thing now is supporting your daughter. And you need to be kind to yourself in order to help her.

    You can do this.
    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."

  7. #37
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    Would it help you and your daughter to get more opinions? Are you worried that other experts would not give you the same treatment advice?

    That's fine. Get more opinions. There is a reason these guys recommend surgery when they do.

    Surgery saved my daughters' lives, literally and figuratively. Your daughter can move on from this in a matter of weeks or a few months. Not even years. My kids felt "normal" within a few months. They don't think about scoliosis any more.
    Last edited by Pooka1; 03-26-2012 at 07:08 AM.
    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."

  8. #38
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    Mar 2010
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    2,755
    Are your parents close? Would it be helpful to you and them to take them on one of your daughter's visits, then excuse your daughter and then let the doctor have a frank discussion with them? Just a thought. You don't need their approval to have your daughter treated. It would be nice to have their support, that's why I suggested that.

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #39
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    May 2008
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    HI Annm, I have read your story with great interest. One thing I would like to advise you a little on. Your daughter is your child, you are her mother, the adult and the decision maker. Your parents are your mother and father but really you have to be strong and stand up and make the decisions that will benefit your daughter, who by the way from a couple of comments sounds like a young lady who is growing up with her own opinions and strong ones at that. She has made the decision to stop swimming, there would have been a reason for her to do this and she made it
    .
    I do agree with Sharon, if you would feel more content within yourself to get another opinion go right ahead and get one. You will get a lot of support on here from people who mostly have been through surgery themselves, and parents
    .
    I can see you are doing a wonderful job and I do know how hard it can be when you feel alone with no one to help you, but please use this forum to reach out like you have done. Ask your doctors questions and make sure you get the answers. I had surgery as you can see in 1966 and honestly it saved my life and I do not for one minute regret it. I am in pain now but I have been able to live my life normally and I thank my mum who
    divorced and had to make decisions herself in a time when operations for scoliosis were in their infancy.
    Sorry to go on a bit you are a strong woman, you found this forum and you will go on making decisions and they will be the best you can do dear, and that's all you can do and that is your absolute best and they will be right so trust yourself.

    regards
    Lorraine
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  10. #40
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    May 2009
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    hi annm
    it would be nice to have some support while dealing with all this..
    but if that is not possible...Sharon is right...you CAN do this...for your daughter....
    and to keep your sanity, maybe, as others wrote, it would be helpful to get another surgical
    opinion or two...then you might at least feel supported by medicine...
    ultimately, as her parent, it is your decision as to what is best for her and for her future...
    i am glad you have a therapist for you both to talk to...that should be helpful....
    doesn't substitute for family, but an objective helpful voice is a positive support....

    best of luck...
    jess

  11. #41
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    May 2008
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    reno,nevada
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    Parents will experience the shock, denial phase early on, it happens.....I saw it when I was a kid with my parents. Spinal surgery to someone who knows little about scoliosis sounds pretty extreme....and fear and all sorts of advice result, based on those fears.

    Dr Men-Muir is here in Reno....the man is a genius, he saved my life. There really is no need to run down to Davis having him up here....He isn’t SRS but he spent many years at Twin Cities. Its one of the best scoliosis surgical training centers in the world and many of the best scoliosis surgeons spent time there at some point. Dr Men-Muir is very honest and straight up....Sharon had her PJK revision done by him and she loves him. I have known him for 7 years now.....

    If Dr Men-Muir doesn’t want to operate for some reason, I would recommend Dr Rutherford who is a Chiro with extensive scoli experience. He kept me walking and skiing for the last 25 years. This is a pain control method. Chiropractic will not straighten curves.

    We also have Steamboat Hot Springs, they have massage therapists and hot tub rooms....I have done many soaks there through the years.....

    Scoliosis “can” be devastating for the patient and parent....it shapes our future, it molds our lives. Adaptability is key, and having a positive attitude really is the best way to proceed. When I was young, I refused to let it dictate what I could do, if anything it pushed me that much more.

    I would get her an exercise ball about 30 inches in diameter. These are great for stretching....I have a strecthing chair, and an arch table if you want it, just let me know.

    Many of us “seasoned” scolis are here for a reason.....Years ago there was no support, no internet, no patients, or parents of patients to talk to, no communication at all. There were no books at all in the 70’s....nothing. You have done the right thing coming here for support and advice, its something I could have used many years ago......

    Remember, deep breaths....and smile! Worrying never does anybody any good.
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  12. #42
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    other opinions

    I appreciate the option of a second opinion, but Shriners allows me to have help with the whole medical process. I took my parents the first time, and have showed them all of the xrays and they have seen her back, but to them everything is just too much for them to handle. You are right I will get through this, I just need to talk about it sometimes without having someone doubting me. Thank you for listening (reading) I feel very supported here.

  13. #43
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    Quote Originally Posted by annm View Post
    You are right I will get through this, I just need to talk about it sometimes without having someone doubting me.
    I think it's fair to say nobody here doubts you. Rather everything you say is very familiar. We have walked that path.

    I predict the speed of the recovery and the quality of the cosmetic result will amaze you. Even after seeing the first kid in the hospital and in recovery, the second kid was all in. She wanted to have a straight back and just move on already. And the second kid had an even faster recovery than the first.

    First you have to get through the shock and anger. Life is just unfair and we have to play the cards as they lay. I am just forever grateful that there are surgeons who can fix this.
    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."

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