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Thread: frustrated

  1. #1
    Join Date
    Sep 2011
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    Virginia Beach, VA
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    10

    frustrated

    Hello everyone! So glad I found this forum.

    My 10 year old daughter was diagnosed with 2 thoracic curves and a compensatory lumbar curve at the age of 8 in early 2010 (she just turned 10 a couple of days ago). When she was diagnosed her curves ranged from 31 down to 19 in the compensatory lumbar curve. She has been in a TLSO brace since May of 2010. The curve seemed unchanged at her first follow-up but then increased to 37 at her last follow-up.

    We are in the military medical system and her doctor is changing commands. Given her age and the chances of progression, I requested a second opinion to try to get her to a specialist with whom she will have continuity of care and can develop trust if it becomes necessary to have surgery.

    By the way, just to give you some idea of the care, not that they are all bad... At the age of 6 we saw one of the PCMs for a respiratory infection. I noticed her rib hump at that point, in the doc's office, and was told it was nothing to worry about and I was concerned for no reason. We are currently with a nurse as our PCM and she's better than any of the doc's we've seen. You can only imagine my guilt at not having ignored the doc and scheduled an appointment immediately with someone else.

    We were able to get a referral out for a second opinion to Children's Hospital of the King's Daughters. The doctor there is a scoliosis specialist and measured her curve at 42. I know that there are some differences just from it being two docs taking the measurements but that was in 3 months time. He knows her previous doc and all I got was that the brace is an appropriate treatment, come back in 4 months. To be honest, I wasn't incredibly impressed and am trying to figure out where to go from here. Is there anyone who can recommend a scoli specialist close to the Norfolk/Virginia Beach area? Any advice on dealing with Tricare and trying to get out of the military system?

    Everything I am reading indicates that my daughter is in the highest risk group for progression. I fear that surgery is probably in her future. I am frustrated by the lack of information being passed on by the doctors we have seen thus far. There have been no recommendations of literature or research. No discussion of the different aspects of her scoliosis, etc. Most of what I know has been through my own stumbling through what I can find on scoliosis.

    I'd appreciate any advice that can be offered. Thanks!

  2. #2
    Join Date
    Oct 2008
    Posts
    299
    Hi, I realize it's probably about 4 hours from you but we have had a good experience with the Virginia annex of the National Children's Hospital in DC. They have pediatric scoli specialists who work in the Fairfax clinic once a week. The appointments are usually just 2-3/year so maybe you could make that work for you. We see Dr. Blakemore, and get G's braces from Orthotic Solutions which is a few minutes away from the clinic. Because they are only there once a week, you need to book well in advance. Hope you find a better care solution for your daughter!

    [Just realized that the main DC medical center may not be any further coming from the south and it's easier to get an appointment--same doctors, just different days]
    Last edited by mamandcrm; 09-08-2011 at 08:09 AM.
    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

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    If you have a Shriner's anywhere near you, that would probably be a good start.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #4
    Join Date
    Jun 2011
    Location
    Indiana
    Posts
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    Throughout my entire bracing experience, we've had to deal with Tricare since my dad was a Marine. As the child, I couldn't have cared less about all that, so I don't really know much about it. However, my parents do, and they enjoy talking with others and helping them out when it comes to those with kids who have scoliosis. If you ever want to shoot them an email, I can give you their address. Just thought that might be helpful.

    I strongly support Linda's suggestion of Shriners. From personal experience and others' experiences, I think it's one of the best ways to go. (But that's just my opinion.)

    If she's in the brace, there's not a whole lot that can be done except to wait. You don't want to jump into this surgery while she's so young. My friend had about 45 degree curves, and in several years, it went down to the point where surgery was no longer a consideration.

    I hope everything goes well for all of you!
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  5. #5
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Hi, I'd definitely look into contacting Shriners as well. That is the route I took when I was getting nowhere with our medical system here in British Columbia. I just wish I had known about them earlier b/c then my son would not have had to have two surgeries and halo traction but that I can't change that but I do now encourage others to contact them as soon as they can. We did have to travel down to Portland Oregon but they provided all the transportation and food etc. They are all around a class act.

    Here's their website with a list of all their hospitals and what each hospital specializes in. http://www.shrinershospitalsforchild...Hospitals.aspx
    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

  6. #6
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Thanks everyone for the encouraging comments.

    Elisa, I read your whole story one evening and I must say it was quite an experience. i am so glad that you were able to get the help you needed for your son and thank you for posting it all. It was so nice to see that things turned out so well for you and your son.

    mamndcr - thanks for the recommendation. I will check into the clinic. I do have friends up in the Northern VA areas well.

    Katie - I would love to communicate with your parents about navigating with Tricare. I am very confused about what to do since the Tricare rep said that the doc has to make the recommendation to send her out but the doc had no idea what I was talking about when I tried to discuss it with him. I have his secretary's contact info and may try to contact her as she is most likely the one in the know. Surgery isn't really even in the discussion yet for me. I am just trying to be realistic in my expectations since she is so young and has so much growing to do. On top of having the double thoracic curve.

    Linda - Thanks for the suggestion of Shriners. I've read several posts containing information about them and I read on one of them that there is a very good doctor at the one in Philadelphia. I am just uncertain about when would be appropriate to contact them. Everything I've read so far points more to having surgery done there. We are not there yet. Would they do just a consultation?

    Thanks again for your help!

  7. #7
    Join Date
    Jun 2011
    Location
    Indiana
    Posts
    68
    I just sent you a PM.

    Also, I have friends whose nephew just had surgery for his scoliosis at the Shriners hospital in Philadelphia. They were extremely happy with the outcome and everything went very well. As for my experience at the one in Chicago, I wouldn't have wanted to go anywhere else. So whether she has surgery or not, I think it's definitely worth looking into. (But I do also know that there are other wonderful doctors/surgeons out there too.) : )
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160

    Shriners Philadelphia

    Hi there,

    I am sorry to hear of your daughter's scoliosis and progression. My daughter was diagnosed at age 6 so I certainly understand your concerns and questions. I definitely agree you need an outside opinion from a pediatric orthopedist who sees lots of juvenile scoliosis patients.

    I would like to second the recommendation for Shriners Philadelphia. We took Leah there for a consult with Dr Betz when she was first diagnosed at age 6. I think you have gotten the wrong impression that they just focus on surgery. That is not the case at all. While they do perform spinal surgeries for many young and adolescent scoliosis pts, they are actually quite conservative and always try bracing first unless there is some contraindication. We pursued fusionless VBS (vertebral stapling) surgery (and ended up having it in St Louis due to scheduling delays) as a choice, an alternative to bracing, because my daughter did not take well to bracing, and since I was unhappily braced myself as a teenager, I had great difficulty forcing her into 9-10 years of bracing. But the choice was always ours. No pressure whatsoever towards surgery. I think at your daughter's age and current curve her chance of surgery at some point are extremely high, but I am sure that if you want to continue with bracing at this point you would not meet resistance to that plan in Philadelphia, unless there was some pressing reason to do surgery now.

    I would strongly encourage you to contact the PA for the pediatric spine program in Philadelphia, Janet Cerrone, and inquire about a consultation. Janet is an extremely nice person, wonderful with kids and parents alike, and she will be able to answer some of your questions and facilitate a consultation if you desire one. She usually replies to e-mails within a few days. Here is her e-mail: janetcerrone@comcast.net

    BTW, has you daughter had a full-spine MRI? If not I would push for one to rule out intraspinal causes of her scoliosis. Scoliosis in a child in her age group is not common, especially since you noted her rib hump a few years ago.

    Good luck, and please let us know how things are going.
    Last edited by leahdragonfly; 09-08-2011 at 09:45 PM.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by leahdragonfly View Post
    (snip) We pursued surgery (and ended up having it in St Louis due to scheduling delays) as a choice because my daughter did not take well to bracing, and since I was unhappily braced myself as a teenager, I had great difficulty forcing her into 9-10 years of bracing. (snip)
    Mom to PJ,

    Just to be clear, Gayle's daughter had fusionless surgery - vertebral body stapling (VBS).

    No pediatric surgeon, whether at Shriners or elsewhere, only does surgery. Many, if not most, will watch and wait for smaller curves or brace moderate curves and a growing number do various types of fusionless surgery like VBS. They have to know all treatments, conservative and surgical. They are the only ones with all the training necessary to treat kids so there is actually no other place to go but to a surgeon.

    Good luck,
    Sharon
    Last edited by Pooka1; 09-09-2011 at 05:45 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."

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by mom to PJ View Post
    Linda - Thanks for the suggestion of Shriners. I've read several posts containing information about them and I read on one of them that there is a very good doctor at the one in Philadelphia. I am just uncertain about when would be appropriate to contact them. Everything I've read so far points more to having surgery done there. We are not there yet. Would they do just a consultation?
    Mom to PJ,

    First of all, I just wanted to welcome you and offer my support.

    You've received some great information so far. As you can see from my signature, my son has been under the care of the doctors at Shriners in Philly for over 7 years. I cannot say enough good things about the EXCELLENT care he has received. (We live in NY city and have decent insurance - and yet we still choose to travel to Philly for his care - speaks volumes). And, yes, they would DEFINITELY just do a consultation. I urge you to take Gayle's advice and contact Janet Cerrone - her contact info is also in my signature.

    Best of luck and please keep us posted!

    P.S. I totally agree with Sharon's post above. I know the title 'surgeon' understandably confuses parents, especially when their child is first diagnosed, but pediatric orthopedic surgeons are the only doctors who should be treating a child with scoliosis - and they have a whole arsenal of weapons at their disposal. In fact, in addition to bracing, fusionless surgical techniques like VBS and vertebral tethering (which is a new procedure that I believe was pioneered by Dr. Newton on the West Coast and is also being used at Shriners in Philly) show a lot of promise and are just a few of such weapons. As you can tell, guys like Dr. Newton and Dr. Betz (at Shriners) are not satisfied with just bracing or fusion. They want kids - particularly those diagnosed with juvenile scoliosis - to have better alternatives to choose from.
    Last edited by mariaf; 09-08-2011 at 10:23 PM.
    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/

  11. #11
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    Quote Originally Posted by mariaf View Post
    As you can tell, guys like Dr. Newton and Dr. Betz (at Shriners) are not satisfied with just bracing or fusion. They want kids - particularly those diagnosed with juvenile scoliosis - to have better alternatives to choose from.
    Which is not to say that aren't satisfied with watch and wait which is quite effective for most smaller curves. That is to say, most small curves will not become larger curves. That coupled with the uncertain efficacy of bracing makes wait and wait the most ethical choice for smaller curves.

    That is true of AIS for sure but JIS may have different trigger angles for going from watch and wait to brace or fusionless surgery.

    Good luck.
    Last edited by Pooka1; 09-09-2011 at 08:56 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."

  12. #12
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    Quote Originally Posted by Pooka1 View Post
    Which is not to say that aren't satisfied with watch and wait which is quite effective for most smaller curves. That is to say, most small curves will not become larger curves. That coupled with the uncertain efficacy of bracing makes wait and wait the most ethical choice for smaller curves.
    Exactly.

    It's a different ballgame for smaller curves. I was referring to curves that are at a level where some action needs to be taken - I probably should have been clearer on that :-)
    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
    Jan 2008
    Location
    NC
    Posts
    8,901
    Hey Maria,

    I knew that your knew that.

    It wasn't very clear but my remarks were directled out to others who may not have known that.
    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. #14
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    i whould stongy get your daughter in the shriners hospitals system. i heard really good thinds about Dr betz from maria when we sent pms to each orther.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  15. #15
    Join Date
    Aug 2004
    Location
    ny
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    Quote Originally Posted by Pooka1 View Post
    Hey Maria,

    I knew that your knew that.

    It wasn't very clear but my remarks were directled out to others who may not have known that.
    No problem, Sharon. Your post made me realize that my statements could have been read or taken different ways - so I, too, wanted to clarify for others who may not have known what I meant.
    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/

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