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cyprusmom
03-11-2006, 01:14 AM
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

pat
03-11-2006, 08:05 AM
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

cyprusmom
03-11-2006, 04:07 PM
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

Celia
03-11-2006, 06:18 PM
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))))))

cherylplinder
03-11-2006, 08:57 PM
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

Celia
03-11-2006, 09:40 PM
Cheryl,

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

MATJESNIC
03-12-2006, 07:14 AM
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

cyprusmom
03-12-2006, 04:48 PM
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. :eek:
Pola

Celia
03-13-2006, 08:26 AM
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.

cherylplinder
03-13-2006, 08:40 AM
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

gerbo
03-13-2006, 12:43 PM
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 :eek: :eek: :eek:

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 :confused: :confused: , 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

Celia
03-13-2006, 04:34 PM
. 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 :confused: Perhaps that group would be the 10% that avoid surgery ?

cherylplinder
03-14-2006, 11:47 AM
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

gerbo
03-14-2006, 12:51 PM
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. :rolleyes: :rolleyes:

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

Celia
03-14-2006, 03:16 PM
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.

cherylplinder
03-14-2006, 06:17 PM
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. :rolleyes: :rolleyes:

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

Gerbo,
I knew where you were coming from. I totally agree. It is good to consider everything. And there is a lot of scepticism in the orthopedic community that is puzzling.

Celia,

Cheers! :) We'll keep in touch about appointment times.

Cheryl

cyprusmom
03-17-2006, 05:02 AM
We are a pretty amazing group of Spinecor moms and dads! I certainly feel like I belong to a 'support' group and you, in my case have really kept me going in this difficult situation my daughter is facing. Nice to have a more 'analytical' mind,yes it's you Gerbo.... ;) as well.You really made my options more clear and even the possibility of ending up in surgery not look so dramatic. I am concerned whether the brace has been fitted properly and with Cheryls and Melissas help I got intouch with the spinecor people in Canada. They are willing to help as soon as I send them digital images, info,history etc. Here is a quote which you will all find of interest:

"In fact, I would not be too much worried about the fact that her in-brace correction was of 5 degrees. The initial correction of the curve depends on several things, like the flexibility of the curve and the initial bone deformation. With a curve magnitude of 40 in thoracic region and 30 in lumbar region, the objective of the brace is generally to stabilize the curve. It is sometimes possible to achieved correction of the initial Cobb angle, but like I said, it does depend on the flexibility and bone deformation, and other factors (maturity, compliance with the brace, etc.).

Keep it mind that a SpineCor brace does not work like the classical rigid brace. With SpineCor, the correction of the scoliosis is progressive and it takes a minimum treatment of 18 months."

Like Gerbo said, maybe my daughters spine is not responding very well. The positive thing is that she keeps gaining height, hopefully without gaining degrees in the curve...Strabilising her in the Spinecor will be permanent. In clothes and with her good posture noone can tell.....
She had an MRI yesterday, Dr. Massos'(Shriners) orders who we are seeing throu telemed agin on the 24th. As you see I am keeping all doors and options open.
( I don't have the results of the MRI yet, that noisy procedure was 1-hour long to get the whole spine!!! She was very brave!)
Pola

gerbo
03-17-2006, 07:43 AM
I am concerned whether the brace has been fitted properly and with Cheryls and Melissas help I got intouch with the spinecor people in Canada.

Good for you!!!


The initial correction of the curve depends on several things, like the flexibility of the curve and the initial bone deformation.

That bit of the quote is what does interest me, as my current focus is on flexibility of the spine, what determines that, and more importantly, can we do anything about it. Any thoughts??

gerbo

Mom37
03-17-2006, 07:58 AM
at initial fitting on second try. I too am worried. Her curve was measured different than full body xray. She is closer to 40 degree out and 37 in. We would like to see more, but Dr says ok. Her curve is hight and fitted different for a Europ[ean curve. I considered it a positive to do anything but surgery but my husband is worried.

gerbo
03-17-2006, 08:44 AM
as i indicated before, that level of correction would make me insecure, and the least i would do, as Pola is doing, is making sure brace is fitted properly. Is person fitting it properly trained and accredited?

I would also look at my options with regards to hardbracing and see how much correction I'd get out of a properly made hardbrace and i think i would prefer a 50% reduction in a hardbrace over a few percent in the spinecor. However whether your child feels the same is another matter. In the end they are persons with their own feelings and at some stage might just say, forget it, I am not doing any of it anymore

Its tough, that's for sure

gerbo

cherylplinder
03-17-2006, 09:04 AM
You might try seeing Dr Sanders with Shriners at Eerie, PA. All treatment there is free, whether you have great insurance or none. They will see any child. The number is listed at their website.

At Eerie, they fit children with the Spinecor. Dr. Sanders is, of course, an orthopedic surgeon. I spoke with them last week about having Rachel seen there. If the Spinecor is not effective for her, I want to have an alternative plan in place, and although I am very optimistic about Spinecor, I felt that was prudent. They were incredibly kind and set me up with an appointment that day.

I, like Gerbo, think you should explore all your options.

smallfry123
03-17-2006, 12:07 PM
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
- I have been a patient when I was 5 years old and now I volunteer at Shriners Hospital in Salt Lake City. I am now 26 years old and I have seen nothing but good things come from this hospital. As far as I know all of their hospitals are just as great!

mariaf
03-30-2006, 09:01 AM
Hi Pola,

We've never "spoken" on the forum but I just wanted to offer my support and throw one more option out there for you to consider. Since I believe you said your daughter still has some growing left to do, then so long as her curve is not more than about 40 (a bit higher would be OK if she has significant flexibility), she might be a candidate for vertebral body stapling being done at Shriners, Philadelphia. They will accept any child from anywhere - the only criteria is that the child be 18 or younger and have a condition that they treat (scoliosis, of course, being one of them).

Good luck to you.


To Smallfry123,

My son, too, became a Shriners patient (or Shriners Kid, as we like to say) at the age of 5, just two years ago. I can certainly understand your desire to volunteer at the hospital. I live 3 hours away from the hospital where David is seen, so I can't volunteer there on a regular basis, but have found many ways to become involved with this wonderful organization. I agree that I have seen nothing but good things come from the great work they do. I'd love to hear more of your story. My e-mail is mariaf305@yahoo.com.

Keep up the good work :)

cyprusmom
03-30-2006, 01:45 PM
Hi Mariaf,
the more I hear about Shriners the more I realize that we will be in good hands if we do end up having surgery. I know someone else mentioned stapling being done at Shriners, Philly but I am still not sure how that is different from a fusion surgery and how they decide if a kid is a good candidate for that. I just haven't researched it at all yet since the possibility for surgery has come up very recently......thanks for your advice, Pola

mariaf
03-31-2006, 08:42 AM
Hi Pola,

If you want to find out more information, look up vertebral body stapling. It is different from fusion in several ways - less invasive, quicker recovery, no loss of flexibility, fewer restrictions for a shorter time after surgery, etc.

It's not for everyone, though. The GENERAL criteria is a curve between about 20-40 with the child having some growing left to do. These are just general criteria - they would, of course, have to do an evaluation.

And, yes, as you said - whatever the outcome she would be in the very best hands. That's how I feel with David and why we continue to travel to Philadelphia. I hope that he will never need further treatment/surgery, but if he should in the future, I know his best options will be in Philadelphia with Dr. Betz and Dr. D'Andrea because, in my opinion, they are "ahead of the field"
when it comes to treating scoliosis.

Good luck and keep us posted,

meagain
06-05-2006, 01:47 AM
Hi everyone. What a great, supportive group this is. I'm posting for the first time. My daughter, 13 has a 40-45 thoracic curve. I noticed it in a dressing room a couple of months ago. We've been to an orthopedic who believes she has quit growing. He says to hard brace her, and come back in three months. We have been to several chiropractic and physical therapy appts. since we discovered her curve. I have just started her with another chiropracter who uses the Denton method. She seems flexible in the spine. I'm trying to make that impossible brace decision. I want to put her in Spinecor but know it's not highly recommended with this degree of curve. She has had an MRI and it was clear. Does anyone have input. Thanks, Meagain

mariaf
06-05-2006, 08:30 AM
Hi Meagain,

If she is done growing then a brace won't help. But, by the same token, if she's done growing then her curve generally should not progress.

If, however, she still has some growing left to do then you have to investigate your options (see my post above about the stapling as another option if she still has growth left).

Has she begun menstruating yet? I believe that as a rule of thumb growth stops about 2 years after they begin menstruating. Also, have they told you her Risser? I don't know that much about the Risser scale since I have a son - not a daughter - with scoliosis; but there are many on this site that could advise you on this.

Good luck to you,

meagain
06-05-2006, 08:49 AM
Maria: Thank you for your reply - When we saw the orthopedic surgeon about 3 weeks ago, she had not started menstruating; since then she has, but he mentioned it was unusual for bone growth to be completed. He did a hand x-ray and it was at 4. I don't know what the Risser scale is.

He believes she is finished with her growth; she is 5'4 and has tall siblings. I always believed she would grow to about 5'8-5'10. Maybe she'll just grow throught the legs now. Megan

meagain
06-05-2006, 08:54 AM
Maria: I just read your reply about stapling, hadn't heard about stapling, but will keep that in mind as an option. Thank you, Megan

mariaf
06-05-2006, 09:03 AM
Hi Megan,

I guess if it were me I might want another opinion about how much growth she has left. If she has tall siblings and has not started, or has just started menstruating that would indicate she has more growing to do. However, I believe that the Risser 4 indicates little or no growing left to do. So, in essence, you have conflicting signs about this - which is why I might want another specialist's opinion in order to know exactly what her options are. I am also confused about why the first ortho said she has no growing left but he wanted to brace her anyway (that makes no sense to me because as I understand it, bracing after growth is done will not work).

Good luck and keep us posted :)

meagain
06-05-2006, 09:11 AM
Maria: The orthopedic surgeon said she has a 50/50 chance of continuing to curve; and your right about conflicting signs, although, maybe her cycle was delayed because of the scoliosis. No wonder I'm confused. :confused: Megan

mariaf
06-07-2006, 08:00 AM
Hi Megan,

Sounds like maybe he's not totally sure that she's done growing, which would explain why he wants her to wear a hard brace. Hopefully you will get clarification from him or another doctor.

You should also try to touch base with Melissa, her user name is Matjesnic (Hi Melissa!!) - Her daughter is 13 and almost finished growing, with curves around 40 I believe. She's in the Spinecor and they are hoping this will help prevent further curvature, in which case she can hopefully avoid surgery.

Good luck,

meagain
06-09-2006, 12:27 AM
Maria: I have managed to talk the local Swedish Hosp. orthotics guy to possible brace Olivia with Spinecor. He has used it in the past, but said it was hard to get parts both times I asked for it before. Thanks to LATigner I found out that parts shouldn't be hard to get.

She will have a supine x-ray as well as standing x-rays done Wed. the 14th. Then the ortho guy and Dr. Dales will decide. The ortho guy said they like to see 50% correction. I told him I'll be happy with any correction that holds her. Dr. Dales had recommended a hard brace, and said that Spinecor wouldn't hold a 45 degree curve. I don't think he's worried about her becoming unstable. I'm arguing that she is flexible. Her back looks straight when on her side or tummy. Is is unreasonable to think it will hold because of her flexibility? It kind of feels like an uphill battle with these two and the only reason I'm continuing is because it's a ferry boat ride away to Seattle and I know they have 2 boxes of Spinecor sitting in the office. Sorry for the ramble- Magestic do you have advice? Megan

MATJESNIC
06-09-2006, 05:52 AM
Megan,

I'm not sure what you should do. My daughter just turned 12 and was in the Spinecor for 7 months before her period.

You really don't know what the potential is until you fit her with the Spinecor and take an x-ray. Nicole's doctors were happy with the in-brace correction. Both her 40 degree curves went down 10 degrees. But the doctors don't hold out much hope for any great correction. They just want Spinecor to hold the curve over the next few years. They said maybe we can get her down to 35 degrees.

Most of the growth now will be slow growth, not any major growth spurt. So I believe the Spinecor can do okay with that.

Good luck to you. Get lots of opinions if possible.

I haven't read your past posts, but have you contacted the orthos in Montreal? If not, I would at least place a call to them.

Melissa

meagain
06-09-2006, 10:02 AM
Matjesnic: Olivia has a 40-45 degree thoracic lumbar and a mid-thoracic of 24. I have reached Dr. Rivard and need to send a reduced x-ray to him via e-mail. (x-rays have been all over & I haven't been able to produce a clear copy.)

If the Seattle ortho isn't listed as a provider with Spinecor I wonder if he is certified to fit. (or would they just drop their names if they haven't ordered for a while?) Megan