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Thread: Not the news we were hoping for or expecting

  1. #1
    Join Date
    Mar 2011
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    52

    Not the news we were hoping for or expecting

    My son was diagnosed with Scoliosis two years ago. He missed his checkup last year because we were without insurance due to job loss and we went Monday for a check up with his Orthopedic doctor. I made the appointment when I took him to get some dress clothes and saw that his curve had progressed. He usually wears loose fitting clothes, jackets, etc. and we had not seen it progressing. When we were there last, he was 17 degrees and the doctor thought there may be some progression but not a lot as boys do not usually progress, etc. Well, he is at 50 degrees and will have to have surgery at 15. We feel horrible about it, don't have any idea how we are going to find the money for it and a lot of other things. To top it off, my mother called my wife and chewed her out that it was all our fault, we should have been watching it more closely.

    So, can anyone tell us what to expect? We live in Jax FL and our doctor is supposed to be one of the best in town, but we have had family members suggest contacting shriners. How hard is it to get your child into shriners? Is it a quick process or a slow process? How do we prepare him for the necessity of the surgery? And how do we stop kicking ourselves for not doing without something else so that he could have gone to his doctor appointment?

  2. #2
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Hi, your story sounds similar to mine. Our son was diagnosed with a moderate scoliosis curve of 47* about 18 months ago and then his curve jumped to about 80* the following year and now it's at 110* and he is scheduled for surgery on March 22nd. We really didn't notice his scoliosis for a good while b/c he did hide it well and we actually thought his back was 'off' b/c he was spending too much time playing video games so we cut his playing time down which of course had nothing to do with the shape of his back. His progression was/is crazy fast.

    It's been very difficult for us to get an appointment here in BC Canada and we have been battling with the hospital for 18 months now with no results so I did contact Shriners back in December at the suggestion of some forum members here. They were extremely helpful and wish I had contacted them earlier but am happy to at least be dealing with them now. It would have been a lot easier to deal with his surgery at 50* than 110* so at least your son is being looked at much sooner than mine.

    Welcome by the way!
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
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    3,535
    Dad or Mom,

    It is not your fault. Scoliosis can be like wildfire. You cannot be expected to x-ray your child every 3 months or so....its just impossible.

    I lived with twin 50 degree curves for many many years, you just donít know how a curve will progress....

    Go to Shriners, and stop kicking yourselves. Get another evaluation from a scoli surgeon.

    I never ever blamed my parents for my scoliosis....Not even once. Thatís not fair.

    Welcome to the forum

    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

  4. #4
    Join Date
    Aug 2009
    Posts
    1,164
    What Ed said. It's not your fault, and Shriners will take care of you for free.

    Our son was diagnosed at 16 with a 35 degree curve, and we were also told that he wouldn't progress. But, he did. Doctors do seem to be a little confused about how to treat male patients.

    You haven't done your son any harm by missing an appointment - it seems like curves that are going to progress to the surgical range progress there, pretty much no matter what you do. The good news is that teenagers bounce back quickly and easily from the surgery. Going through it is always worrying, but they come through with flying colors, and it quickly becomes a dim part of their history.

    Best of luck

  5. #5
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by LokanasDad View Post
    My son was diagnosed with Scoliosis two years ago. He missed his checkup last year because we were without insurance due to job loss and we went Monday for a check up with his Orthopedic doctor. I made the appointment when I took him to get some dress clothes and saw that his curve had progressed. He usually wears loose fitting clothes, jackets, etc. and we had not seen it progressing. When we were there last, he was 17 degrees and the doctor thought there may be some progression but not a lot as boys do not usually progress, etc. Well, he is at 50 degrees and will have to have surgery at 15.
    I'm sorry to hear it. Welcome to the forum.

    To top it off, my mother called my wife and chewed her out that it was all our fault, we should have been watching it more closely.
    Watching a curve, getting radiographs every day even, isn't going to stop it. Nor is there any guarantee that any conservative treatment (bracing, PT, etc.) would have prevented your son's curve from progressing. There is NO evidence you missed any boat here. Your son is right at a surgery trigger angle. Still, they could fix him even if he had a much larger curve.

    These comments from family members who don't have a single clue about a damn thing are worse than unhelpful. They are hurtful for no reason.

    So, can anyone tell us what to expect? We live in Jax FL and our doctor is supposed to be one of the best in town, but we have had family members suggest contacting shriners. How hard is it to get your child into shriners? Is it a quick process or a slow process? How do we prepare him for the necessity of the surgery?
    I second this suggestion.

    And how do we stop kicking ourselves for not doing without something else so that he could have gone to his doctor appointment?
    There is no good evidence that suggests catching the curve sooner might have avoided progression to 50*. How's that for consolation? The jury is out on bracing efficacy.

    Hope that helped.
    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."

  6. #6
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    It's natural to 'blame' it seems. My daughter was the first one to notice her brother's back was off and I dismissed it so she blamed me for not taking him in sooner. Then when I did take him in for a checkup and his curve was 47* I blamed myself. We got the second set of x-rays done about six months later and he had progressed to about 80* and then panic set in and all the relatives were on my case constantly but I couldn't/still can't get an appointment with a spine specialist (in BC) and now his curve is 110* and I totally blame the medical system which really are the only ones that deserve to be blamed at all.

    I called Shriners Montreal b/c they're the only Canadian hospital. They gave me the number of the local Shrine in Vancouver BC so I called them and they gave me the number of a local Shriner gentleman who lived in the same town as me so I called him and he came to my house the very next day and helped me fill out papers. You can also print the application off and fill it out yourself and send them in. I also wrote a letter explaining our circumstances which seemed to speed things along. Just start by making a call and they'll direct you to someone who can help.
    Last edited by Elisa; 03-09-2011 at 03:07 PM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  7. #7
    Join Date
    Mar 2010
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    2,755
    I've heard Shriner's is the best place to go, especially if you don't have insurance. As for the hurtful comment of your family, some people feel that there has to be blame somewhere and they speak without thinking. You are absolutely NOT to blame for this. My grandmother had hurtful words for my mom when we found out I had scoliosis. I think that family sometimes think they can say whatever they want without realizing the damage they are causing. Your mother needs to be reminded that the focus should be on getting your son well, not passing blame where it is not due. Best wishes to you and your family.

  8. #8
    Join Date
    Nov 2010
    Location
    British Columbia
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    918
    About Shriners and how long it took. I contacted them not too long after I joined this forum so that would be either late November or early December. I could have had a date to see a spine specialist on January 5th. but our passports would not arrive until January 15th. so I couldn't take the earlier appointment and took the January 21st. appointment instead. My son was put on the "urgent" list and was given the surgery date of March 22nd. I'd have to go back and do the math but I think it was about a month or so after our initial visit to Portland that they called with a surgery date. It all happened really fast but my son's case is urgent so I'm sure that's why we got the actual surgery date so quickly. Actually, my son will have two surgeries as well as traction b/c of his crazy curve but things should be much more straightforward with your son who has a 50* curve.

    I thought we sorted through all our blame but today my husband brought me in a pic of Elias sitting beside me at grandma's house and he asked when that pic was taken and I told him two years ago and he said: "look he's already leaning to one side back then! We should have picked up on it." I don't know, I really think in that pic I kinda have my arm around his shoulders and am pulling him towards me but my husband is still blaming himself and me no doubt b/c we are his parents. It's a waste of time blaming family members, just best to acknowledge what the problem is and then move on to find a solution.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  9. #9
    Join Date
    Jan 2010
    Location
    San Bruno, CA
    Posts
    271
    You will get a ton of great and useful information from a ton of great people on here who have gone through similar things. Listen to them. They're better than they let on. :>

    Just wanted to comment about this.

    Quote Originally Posted by LokanasDad View Post
    To top it off, my mother called my wife and chewed her out that it was all our fault, we should have been watching it more closely.
    NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO (repeat x 1000)

    I did my graduate work on a scoliosis therapy and so I spent a lot of time with several surgeons. I heard them say many times that some curves just progress despite all best efforts. This appears to be even more true with boys and scoliosis. I'm not sure what's published about that specifically, this is just generally their comment. If catching scoliosis early was a surefire way to avoid surgery, I doubt there would be many surgeries right now.

    Please don't put blame on yourself for this. And don't let anyone else put blame on you either.

  10. #10
    Join Date
    Mar 2011
    Posts
    52
    Thank you all for your replies. My mother called again yesterday, kind of sort of apologizing for what she said to my wife. She said she was just upset. She never really said she did not mean what she said, just that she should not have said it. I have not talked to her, nor do I really want to at this point. I am too mad. She called while I was in the ER with kidney stones.

    We do have insurance now, but like so many it only pays 80/20. So a hospital bill of $100k puts me in a lot of fear. I do not see how we would pay off $20k in medical bills.

    My son is just kind of ignoring it, does not want to talk about the options, does not want to consider Greenville because that area is "home" and he does not want to associate "home" with pain. I cannot say that I blame him.

    In the meantime, I am talking to people at work who have kids who have had this surgery. Out of a staff of around 100, there are 4 of us with kids who have had this surgery or need it. One lady has an adult daughter, and two guys have teenage daughters who have had the procedure done. One had our doctor, but she also had major complications so I am really hoping that his experience is atypical. He says the morphine only helps so much and they are still in a fair amount of pain. As a dad, I cannot stand that my child will be in pain, even if that pain is going to help him in the long run. Right now, we are still just trying to get a game plan.

  11. #11
    Join Date
    Oct 2008
    Posts
    299
    Please do not hesitate to contact a Shriners Hospital. Others can speak to this much better as we did not end up needing surgical intervention, but for me to get an appointment in Philly was the matter of a couple forms and a phone call to the department. I was there within the month. You don't need a sponsor (which I initially worried about A LOT), they figure all that out for you. They are there to help you, it's not a competitive application kind of thing. There will be some expenses for travel and pre-op lab tests and such, and they may be billing insurance now, but the remainder of the hospital expenses are gratis. Also, if you end up at a for-profit hospital, talk to them about fee forgiveness, and such, as some will waive fees if you meet certain requirements. But be very clear on what they are waiving, as the docs bill separately.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  12. #12
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Yes, it is a very simple process to be seen at Shriners. Many people, including myself, never even filled out an application. If you are interested in going to the Philadelphia Shriners Hospital, it can be as easy as contacting Janet Cerrone (the Physician's Assistant to the spine team). Her contact info is in my signature. She is extremely nice and very knowledgeable.

    Best of luck.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  13. #13
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    My son has been pretty blase about the whole thing; maybe it's a guy thing. As his surgery draws closer though he's actually getting quite excited about heading back down to Portland and getting started with things. I notice that he's been marking off each day this month on the calendar in his room and every day we talk about our upcoming trip and what we're bringing etc.

    We're also working on getting him a laptop so he can keep in touch with friends, play games and keep up with his schoolwork (not). It's a bit different with my son though b/c his scoliosis is really severe and he will need two surgeries as well as traction and he will spend probably about five weeks in the hospital but that's only b/c we were made to wait for so long up here in Canada. You won't have that problem at all and if your son does have surgery he will probably be in and out of the hospital within a week.

    Hang in there, it will all work out fine.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    It continues to astonish and amaze me how family members who KNOW they didn't lift a single finger to understand the medical problem at hand STILL will go so far as IGNORANTLY criticize a parent. We know the person who made this comment is ignorant of the facts just from the content of them. No guessing required.

    They IGNORANTLY think the problem is due to a parent not catching it in time versus there nothing to be done conservatively that will guarantee avoiding surgery.

    I mean this is the 21st century so therefore they can just assume surgery can be avoided.

    Where do they get that kind of nerve? Can you buy it? It raises obvious cluelessness to symphonic levels.
    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."

  15. #15
    Join Date
    Mar 2011
    Posts
    52
    Actually, she blamed it on his slouching all the time. In retrospect, he was slouching all the time while sitting because it felt "normal" to his spine. Sitting "up straight" was a task. Looking back on the last several months, there are a lot of signs, like the sitting hunched over to one side, kind of sitting in a ball sideways, and his complaining that his back hurt after doing the dishes by hand. We just figured it was his not wanting to do the dishes/ the sink being so low since he is 6' 1" tall. I think I am a lot like Elisa's husband right now. I keep looking back, trying to see where we missed it. I know it will not help with where we are, but I have no power to change where we are, so it at least gives me something to keep busy.

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