Shriners at Springfield, Massachussets

[cherylplinder]

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..........

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]

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 40º in thoracic region and 30º 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]

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]

My daughter only had 4 degree reduction in brace

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]

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]

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]

Shriners Hospitals

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]

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]

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]

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]

decision about bracing

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]

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]

bracing

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]

stapling

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]

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