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Thread: Shriners at Springfield, Massachussets

  1. #1
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    Shriners at Springfield, Massachussets

    We just had a telemed conference with doctors from the Shriners hospital in Springfield, Massachussets who examined my daughter for the first time. They visit Cyprus, where we live, in April but get an opinion first through the telemed, prior to the visit. Just wanted to know if anyone has been treated at this particular hospital and can give me names of doctors or any other comments. Thanks

  2. #2
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    Hi Cyprus Mom! We've "met" before over on the Spinecor Thread; we had one visit to Springfield Shriners, met with Dr. Peter Masso to talk to him about stapling, which they're doing down in Philly Shriners. Didn't come away from the meeting learning anything really new, it was a second opinion visit. I'd be interested to hear what he has to say about SpineCo; at the time of our visit, we weren't even thinking about SpineCor, so we never discussed it with him. Pat

  3. #3
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    Hi Pat, nice to 'meet' you again.
    I believe Peter Masso is the doctor who talked to us as well. It was all done through cameras and TV screens and kind of confusing for a first time so I didn't even catch his name or a close-up of his face....What can I say, I have been sensing that my daughter wasn't doing very well, let me remind you she has a curve of 40T and 30L, still no period, only 11, in other words very high risk of progression. The spinecor people told us that as well. Her correction in the brace only 5degrees down. The shriners called that a failure! He warned me of the dangers, wished me good luck and said he didn't know anyone who was using the spinecor successfully! I said I know they use it at Erie and his comment was that the doctors there are friends with the Spinecor people...someone is making lots of money from that, he added! Obviously the guy doesn't believe in the Spinecor, but at the very end he did say ok, I am not totally condemning it I am just saying its not working on your daughter, she needs something more aggresive. He wants to see an MRI of hers and 2 more X-rays in and out of brace and will talk again in 2 weeks. Like I said, I sense she needs to be rechecked maybe put in a rigid brace or even surgery eventually. I have faith in the Spinecor but like all braces there is a chance of failure. The very small correction in brace has not given me much hope.
    Please remind me is it your oldest daughter who had fusion? Is that why you were visiting the shriners and where did she end up having it?
    thanks,
    Pola

  4. #4
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    Pola,

    I'm so sorry to hear about your experience with Dr. Masso - his comments sound like sour grapes to me. I have a friend who went to him for a second opinion and she was impressed with his very conservative approach. Similarily, I have heard nothing but positive things from many MANY parents about the Shriners in Erie ! Parents travel clear across the United States to have their children casted by Dr. Sanders and his team. He cares immensely about these children and his love for them is unquestionable.

    I'm sure hearing comments like that about the Spinecor brace makes you uneasy about your decision to get it. Your daughter is very close to the surgery range and your stress level is understandably high. How flexible is her curve ? Have they done a bending x-ray ? You really have to go with your gut instinct on this - what YOU believe. There is no guarantee that a rigid brace will hold her curve any better and prevent her from getting surgery - although a corrective cast WILL for sure ! I know of doctors who routinely put older children in corrective casts before going into a regular brace.


    Big ((((((hugs))))))
    Last edited by Celia; 03-11-2006 at 08:01 PM.

  5. #5
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    Do you remember what her supine x-ray was? Dr. Rivard determined that Rachel's curve had some degree of flexibility with that. Her thoracic curve is 38 degrees standing, but her supine x-ray of the same curve was 22 degrees.
    HUGS!!!!
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  6. #6
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    Cheryl,

    Oh ya, I forgot about the supine x-ray That's great news about Rachel's flexibility though.

  7. #7
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    Pola,
    I am sorry for what you are going through right now. But I thought her rib hump had gone down. Isn't that enough to show that the brace is working? I also thought that most people only showed a five degree reduction when in brace. Some people show more, but it is not necessary. If I were in your position, I would get in touch with the inventors of the brace in Canada. I would explain what is going on and ask them their opinion. I am sure they would be glad to offer explanation and whether the Spinecor is helping Anastasia. It's just a thought. My thoughts and prayers are with you.
    Melissa

  8. #8
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    Thank you all so much for the great input.
    I am so scared and confused right now any ideas are greatly appreciated.

    Melissa thats a great idea to contact the makers of Spinecor, express my concerns, and hopefully they will have something helpful to say. My daughters thoracic curve did go down a bit when examined in Greece by the spinecor ortho. But this conference with the Shriners 2 days ago was done through TV and all they saw was the curves and hump....and the Spinecor, which for them, is a failure. He said that any brace should be expected to give 60% correction to be called a success. This might be the case for hard braces as far as I know but am I correct that the philosophy with the Spinecor is less correction, but permanent? Anastasias 5 degree correction inbrace was, according to our ortho the 'minimum' accepted, but ok to start with.

    We never had a supine x-ray done, is that routine with spinecor fitting? I am wondering now. I will be asking that.
    Also, Celia what about the bending x-ray. Did your daughter have one to check her flexibility? Cause Anastasia didn't have one of those either.
    Thats great to hear about the Shriners at Erie. Unfortunately they are not the ones to visit Cyprus. Tomorrow we will go for 2 x-rays in and out of brace and make an appointment for the MRI to send to the Shriners, Springfield. Hearing their opinion won't hurt,(just confuse me more) they will see us in person on the 11th of April and then end of April we go to Greece to our Spinecor orthotist and orthopedic. Hopefully I will not be losing my marbles by then.
    Pola

  9. #9
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    Quote Originally Posted by cyprusmom
    Also, Celia what about the bending x-ray. Did your daughter have one to check her flexibility? Cause Anastasia didn't have one of those either.

    Pola,

    I don't believe Deirdre ever had a bending x-ray. Everything happened so fast when we first discovered she had scoliosis. We saw the pediatrician one week, the following week we had the appointment with the ortho and she was casted the week after that. I think bending x-rays or supine x-rays are useful to assess curve flexibility. Cheryl, if I'm not mistaken Rachel didn't have any correction with the boston brace and with the spinecor there was some ? An in brace correction of > 50 degrees is the goal, but that doesn't always happen - I don't think it happened with Gerbo's daughter either. I wouldn't put too much weight on what Dr. Masso said - he is obviously very old school.

  10. #10
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    Celia,
    That's right. The in brace Boston x-ray was 31 vs 33 . But the 33 degree out of brace x-ray was done in December, and the 31 degree in Boston x-ray was done a month later, January 16, I think. Her curve may actually have been 38 and probably was by then.
    Her out of brace curve in January measured 38 degrees. In Spinecor, it was 30 degrees, I think. Her rotation went to 0 in Spinecor.
    The difference from December to January out of brace x-rays made it all a little confusing.
    I hope I made sense.
    Pola,
    I read back to see your data from before. Anastatia's rotation decreased quite a bit. Was that in or out of brace?
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  11. #11
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    what a difficult situation to be in, all these measurements can be so confusing knowing that from xray to xray there can be a 5 degree difference just from the way they are standing, and then there can also be a five degree or more difference in how the same xray is read by different people, so a small improvement could be an actual worsening, or a measurement could be worse whilst in effect there is no difference or there actually was an improvement

    If you look at the spinecor literature, than it appears that most cases have an initial improvement of about 30-40 %, with a further slight improvement after 3 months and an eventual outcome close to the original 30-40% (haven't got it in front of me so figures might be slightly out)

    Our original improvement in a hard brace was from 29 to 21 degree (25%).

    Our measurement in the spinecor was 16 degree, but the out of brace measurement then was 26 degree, that falls in the 30-40 percent categorie, which could be good. Saying that, the 26 degree xray was measured by somebody else and he thought it was 21 degree only , which would mean a 21 to 16 degree reduction; barely 25 %, and with possible measuring faults, there might be no correction at all, (or correction could be much larger if measurement variations work out in the opposite direction)

    However, for me, a 16 degree overal position is more then acceptable, and if the spinecor helps to maintain that , i'll be happy. I am waiting though till next xray (3 months point) before i'd consider dropping my current very guarded position.

    In your case, pola, a 5 degree reduction, starting of somewhere in the 30's doesn't sound encouraging, and there are 3 possibilities

    1) spinecor is a fake, results are doctored by doctors desperate for succes, as their life and reputation rides on it
    2) your daughters spinecor hasn't been fitted properly
    3) the curve of your daughter is very rigid, and is refusing to respond.

    What would i do in your situation??

    If you consider spinecor your one and only option for a bearable / acceptable brace, you need to make 100 % sure you are getting as much out of it as possible. Indeed write to either dr rivard or andrew mills (the orthotist/ manufacturer, email address on spinecorporation website), and you could even go further, if you have the financial means to do so, and see either of them by traveling to the UK or Canada (personally I'd consider canada above UK)

    This either makes an enormous difference, or it doesn't in which case a well made hardbrace must be an option, whether your daughter will be able to tolerate/ accept that, specially in the light of summertemperatures on cyprus, i don't know. Ofcorse, you can always get one made and fitted and see how much correction you get out of it, if it is much, much better then currentsituation, it might make it worthwhile, if it doesn't make much difference, you might still decide to continue with the spinecor, hoping that at least it will give enough control, to prevent significant deterioration and make future surgery (if necessary) a bit easier.

    Worse case scenario, as I said before, would be surgery, many people are witness to this being very acceptable, giving excellent results, and giving an excellent quality of life. Even that is not the end of the world!!

    Take care

    gerbo

  12. #12
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    Quote Originally Posted by cyprusmom
    . He said that any brace should be expected to give 60% correction to be called a success. This might be the case for hard braces as far as I know but am I correct that the philosophy with the Spinecor is less correction, but permanent? Anastasias 5 degree correction inbrace was, according to our ortho the 'minimum' accepted, but ok to start with.
    I just thought of something else, the 50% "inbrace" correction results on average in a 5 - 7 degree post weaning correction and over time it's questionable whether there is any permanent correction and the curve just regresses back to pre brace levels. So, we're not talking significant reduction here ! Although, if you're trying to avoid surgery that is pretty good. Another thing..... I'm thinking back to that SRS presentation on the effects of PHV on curves over 30 degrees. Didn't they say that 90 % progressed to surgery levels despite bracing ? I wonder if that would include people who have 50 % inbrace correction Perhaps that group would be the 10% that avoid surgery ?
    Last edited by Celia; 03-13-2006 at 09:47 PM.

  13. #13
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    I don't think Spinecor is fraudulent. We have seen a lot of success, even in our little support group.

    Pat's daughter with right thoracic20/compensatory lumbar 17 has gone from 7 degrees in brace to zero, in a short amount of time. Ailea's daughter was 35L/18D and is down to 24/24. LAtigner's daughter has gone from 36/42 to 26/32 in a short amount of time and only wears the brace part time. Deidre has gone to 1 degree in brace. Nicole has gone from 37 to 32, out of brace.
    And I don't think Pola's daughter has had x-rays in a while, but I thought her rotations went down significantly with the last measurements. I know there is some room for measurement error, but there is a definite trend there.
    That is a lot of success for a small group.

    The potential for use in smaller curves is so extraordinary. Our ortho didn't brace Rachel at 18 degrees because of the muscle atrophy that occurs with hard braces, that is not seen with Spinecor. The hard braces also restrict renal blood flow and decrease lung capacity. Obviously, the potential for harm is there, and benefit versus detriment to the child must be weighed.
    The Spinecor does not have these drawbacks. It is also more comfortable and does not impact a child's self image a some braces do.

    I feel that if Spinecor had been made available to me nearly 3 years ago, when Rachel was 7 or 8, her bones were even more maleable than they are now, and her growth velocity was lower, and her curves were smaller( 18 or 19 degrees and stable), we would not be where we are now.

    It might not be right for every curve, but there is definitely a need for this brace in the treatment of scoliosis.
    No brace can be successful in every case.

    That's my cheer and I'm sticking to it!

    I really just want to encourage Pola with my observations until she can assess where she is, and decide whether to continue with her current treatment plan or formulate a new plan.

    Fondly, (You all have really forged a place in my heart!)
    Cheryl
    Last edited by cherylplinder; 01-07-2008 at 11:35 PM.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  14. #14
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    I don't think Spinecor is fraudulent. We have seen a lot of success, even in our little support group.
    i do not think so either, just feel all options need considering when faced with a dilemma.

    Seeing all those results in one go, it does look good.

    I am optimistic as well..........

  15. #15
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    Quote Originally Posted by cherylplinder
    I don't think Spinecor is fraudulent. We have seen a lot of success, even in our little support group.

    Fondly, (You all have really fordged a place in my heart!)
    Cheryl

    Cheryl,

    We really must get together for that Montreal latte rendez vous.

    I find the response by orthopaedists to the Spinecor very puzzling, yet it shouldn't surprise me since serial casting for infantile scoliosis is rarely practiced by orthopaedic docs. I feel so blessed to have two of the best doctors in the world treating my daughter and I can't understand why Deirdre is the exception to the rule.
    Last edited by Celia; 03-15-2006 at 03:56 AM.

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