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Thread: So glad I found you guys!

  1. #46
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    Nov 2010
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    Thanks again for all the input. The information out there especially on the Net about scoliosis is SO overwhelming. I spent the entire day yesterday researching and reading and by the end of the night when I had finished watching twenty or more surgery videos my head felt like it was going to explode again.

    Since this disease affects girls four times more than boys the Net is filled with videos of girls' stories and they came across as being mostly concerned with their new straight back which led me to believe these girls were either being pushed into surgery by their parents or they themselves were forcing the issue. I really would like to have seen and heard some teenage boys' stories but I just didn't come across them last night.

    I know my son has to see a specialist ASAP BUT you guys have to understand that living here in Canada and especially in BC, there are only TWO specialists that are available to look at and properly diagnose my son. I keep reading that I should get a second or third opinion but I'm having a hell of a time just getting in to see ONE! This is so frustrating and it makes me want to cry. That's our wonderful medical system for you. Yes, it's basically free and can walk into any clinic any time and be treated without cost but if you our your child needs to see a specialist then it takes forever it seems. I am envious of you guys in the US who have more specialists floating around than you know what to do with.

    Michael, I am glad you and your wife like Vancouver. Yes, it is a beautiful place for sure. Too big and busy for me so I prefer to live on a much quieter Vancouver Island. I spent most of my life in Victoria but that became too busy and too expensive so we moved up to Campbell River which is a three hour drive north of Victoria and we absolutely love it here and I doubt we'll ever move.

  2. #47
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    Quote Originally Posted by Elisa View Post
    I know my son has to see a specialist ASAP BUT you guys have to understand that living here in Canada and especially in BC, there are only TWO specialists that are available to look at and properly diagnose my son. I keep reading that I should get a second or third opinion but I'm having a hell of a time just getting in to see ONE! This is so frustrating and it makes me want to cry. That's our wonderful medical system for you. Yes, it's basically free and can walk into any clinic any time and be treated without cost but if you our your child needs to see a specialist then it takes forever it seems. I am envious of you guys in the US who have more specialists floating around than you know what to do with.
    I winced for you when I read that. I lived in Calgary for three years and know the score in re the medical system. We were US ex-pats and so had private insurance. But with long wait times, I was simply going to move back to the states if we needed any serious or immediate medical care. Or drive 2 hours down to Montana or something. Luckily, my girls had not developed scoliosis when we were living in Calgary.

    That's why I immediately suggested Shriners to you. I really think it is probably your best option at the moment. You son's curve appears to be at least 80* and likely between 80* and 90* to my UNTRAINED eye and you need to get in somewhere soon. I hope if you send the radiographs along with the Shriners application, you will go towards the head of the line.

    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. #48
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    My husband also reminded me that girls are very social and tend to take a lot of pics of themselves and make little videos whereas boys tend to not advertise their condition and generally aren't as social. I think that's why I had a hard time finding any boys' stories. Well, I am going to start taking pics and keeping notes and someday if/when my son has surgery I am going to make a slide show and post it so other parents with boys with scoliosis can view it.

  4. #49
    Join Date
    Oct 2009
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    89

    Good advice from others - see a surgeon

    Elisa

    I agree with everyone telling you to see an orthopedic surgeon and that you should not follow the advice of others, like myself. However, with that said, you should use it as input into your research of scoliosis. Use it to help you understand what options you should research or consider. It is better to be aware of all options sooner than later. I wish I had been on this forum and learned about some non-surgical methods as well as some new surgical methods (VBS) much sooner.

    It was almost a 9 months after my daughter was first diagnosed at 7 yrs. old that we started any treatment. She was 23 degrees @ 7. We were told to just watch it, and for the most part do nothing. Then, before we knew it she was 36 degrees.

    At 23 degrees we could have started night-time bracing and some other non-surgical methods to get it back down to 10 degrees or less. But instead we have spent the past year and significant time and money to get it back down close to 23 degrees (maybe we are at 18-20 deg or less).

    Too often orthopedic surgeons only recommend two solutions: bracing and surgery. It is pretty black and white with surgeons. I don't expect surgeons to know everything about non-surgical methods. We should all be thankful they spend all their time on surgery, and research into new surgical methods. So when surgery is required, they can be the best.

    There are many other options out there and the reason I mention them in my previous post is so that you are aware of them, and do not have to spend days, weeks, etc. reading through the internet and forums to find possible treatments for your son, and maybe come up with the same list. Also, the more you know, the better prepared you will be when you meet with a surgeon, to ask a lot of good questions.

    While I trust surgeons with my daughter, you will find that they differ on their treatment. We have been told all of the following from surgeons: wait and watch, brace with Charleston, brace with Boston brace, don't brace at all because bracing does not work, surgery now, surgery later, no surgery, etc. It is very difficult as a parent.

    The best you can do, and I know you are doing it, is to learn as much as you can, keep an open mind, and consult with professionals, both non-surgical and surgical.

    In the end, considering the size of the curve, surgery is very much a possibility, so, seeking the advice of a surgeon (specializing in scoliosis) is critical. And this surgeon can give you an accurate measurement (but so can a chiropractor specializing in scoliosis).

    If you plan to see more than one professional (surgical or non-surgical) I would recommend you get a copy of the x-rays (films) so that you can take them with you to visit others. I haul our films with us everywhere we go.

    If a doctor wants to put them on a disk for me, I always take my laptop, load the disk, and make sure I can display them, before I leave without the x-ray films.

    I wish you and your son the best.

    Mike

  5. #50
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    Nov 2010
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    British Columbia
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    Another detailed post lost.

    Just wanted to let you guys know that I really appreciate the time and thought you put into your responses; it means a lot to me. I'm also glad that I am back working part time again b/c it gets me out of the house and away from my computer otherwise I keep obsessing over all of this and it literally gives me a headache.

    I did go on a rant about how pathetically slow BC Children's Hospital is about seeing my son but I'll spare you my rant and just say that I will be contacting Shriners ASAP and go from there.

    Are you guys telling me that there's people out there that never ever recommend scoliosis surgery under any circumstances and instead recommend PT and exercise etc.? Call me naive but I do find this hard to believe.

  6. #51
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    British Columbia
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    I have written my letter to Shriners and was wondering if anyone knows if they have an email address b/c I cannot find one. Thanks.

  7. #52
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163

    Shriners

    Hi Elisa,

    Shriners has a short application form on their website--did you send that in or just a letter?

    Here is a link to the application: http://www.shrinershq.org/Hospitals/Main/Admission

    Their website says to return the application to the nearest Shriners Hospital, which I believe is Portland:

    3101 S.W. Sam Jackson Park Rd.
    Portland, OR 97239-3009

    Telephone: (503) 241-5090
    Fax: (503) 221-3701

    BTW, you do not need a Shrine sponsor or affiliation. Just leave section 9 blank.

    Good luck!
    Last edited by leahdragonfly; 11-21-2010 at 08:29 PM. Reason: info added
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  8. #53
    Join Date
    Nov 2010
    Location
    British Columbia
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    I've already printed off the application Gayle, I was just thinking of sending them an email as well but can't seem to find an address. I did call and the girl said to call back tomorrow and speak to HR and they'd have an email address for me.

    I tried not to bash BC too much, just a tiny bit and focused more on his x-ray results.

  9. #54
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    Jan 2008
    Location
    NC
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    Quote Originally Posted by Elisa View Post
    I've already printed off the application Gayle, I was just thinking of sending them an email as well but can't seem to find an address. I did call and the girl said to call back tomorrow and speak to HR and they'd have an email address for me.

    I tried not to bash BC too much, just a tiny bit and focused more on his x-ray results.
    I would send the radiographs if I were you. I bet they get you in very soon.
    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."

  10. #55
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
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    That was a question I had Pooka. How do I get these? Michael mentioned something about bringing in my laptop but am wondering if I need a CD or DVD? I'm so not good with electronics.

  11. #56
    Join Date
    Jan 2008
    Location
    Oregon
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    Elisa,

    I added more info to my post above. Here is an e-mail for inquiring about applications:

    For information about a completed application or for other questions, please e-mail patientreferrals@shrinenet.org, or call (800) 237-5055 or (800) 361-7256 in Canada. Both lines are staffed weekdays between 8 a.m. and 5 p.m. EST.

    Sharon has a good idea about including copies of the x-rays.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  12. #57
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Thanks Gayle! Must run now and tend to all my chinchilla kids and will check back in tomorrow. Like I said, so glad I found you guys!

  13. #58
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    Jan 2008
    Location
    NC
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    Quote Originally Posted by Elisa View Post
    That was a question I had Pooka. How do I get these? Michael mentioned something about bringing in my laptop but am wondering if I need a CD or DVD? I'm so not good with electronics.
    You posted them as attachments here. You can email them or print them out and send them or fax them.
    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."

  14. #59
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    Jan 2008
    Location
    NC
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    Also mention the wait you were quoted to see a pediatric orthopedic surgeon in Canada. And then say something about that is just the first consult and that the wait for surgery is likely way longer, a statement which I believe to be true but you should ask maybe.

    The most commonly cited surgical trigger angle is 50* plus progression.
    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. #60
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,978
    Quote Originally Posted by Pooka1 View Post
    I would send the radiographs if I were you. I bet they get you in very soon.
    I concurr.

    Ed
    49 yr old male, now 60, the new 55...
    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

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