spinecor

[mariaf]

Orthos using ANY OTHER bracing system require a mandatory 24-48 hour UNbraced period for a reason ... to get a true and accurate Cobb. It takes that long for the body to relax to normal posture.

I just wanted to say that I specifically asked Dr. Betz once why he requires kids be out of brace for 24 hours prior to x-ray and that's EXACTLY what he told me.

He said that x-raying the spine within the first 24 hours of taking a brace off could be "masking" a true reading because it takes 24 hours at least for the muscles to return to their normal positions.

I honestly never understood why the Spinecor prescribers do "in brace" x-rays - and I do have to wonder if, in some cases, that practice wasn't in fact "masking" progression. I'm referring to the cases Pam cited where the curves "appeared" to be holding for some time while in-brace x-rays were being taken - and then all of a sudden there was a big jump in numbers.

Just my thoughts................

[flowerpower]

Can't work the quote thing right, was trying to quote txmarinemom:

(QUOTE) In all my years (about 30 now) of dealing with scoliosis, I've never heard of a "spine nurse" ... nor can I imagine any competent medical professional pushing a brace simply because of its development locale. What exactly *is* a "spine nurse", Theresa, and why would you ask a nurse about your child's treatment?[/QUOTE]

My son's surgeon has a highly qualified nurse who is his Scoliosis/Surgical Coordinator. She is involved and very knowledgeable in all aspects of treatment, from bracing to surgery. She assists the dr. at each appt. throughout the day. She takes patients on a hospital tour prior to surgery and can explain everything from checking in to what takes place during surgery, & recovery. She attends conferences, seminars, etc. specific to scoliosis and keeps up to date with latest developments & treatments. I, as do other moms of patients, feel very comfortable asking her "general" questions. Any specific questions regarding my sons treatment, recovery, restrictions, etc. she will forward to dr. and have him answer.

It sounded to me like Theresa was merely making an inquiry to the nurses as to whether there were optional treatments available at the hospital, not questioning the nurse about her childs treatment, but maybe I missed something.

I would like to add though, that I agree with Maria and Pam's thoughts on in-brace x-rays.

Renee

[RugbyLaura]

I'm really sorry forum - I had promised to try to ignore negative comments but find myself unable to do so in the face of such biased (and frankly ridiculous) criticism.

A lot of children in this group with juvenile scoliosis are doing remarkably well. There are medically documented cases where curves have completely resolved and these children have remained scoliosis free 5 years post weaning .Unfortunately the wheels of change are slow when it comes to orthopaedics and many of these doctors are old and set in their ways.

I do not consider the spinecor brace an *experimental* brace! It has been around for the past 25 years unlike vertebral stapling which has been around for 5 short years. Many of the children who were wearing the spinecor and later progressed to surgery were fitted with the brace when their curves were already in the advanced stages of 40 degrees or more. The articles on vertebral stapling are riddled with inaccuracies and inconsistencies. I am dismayed that many of the parents who are advocating vertebral stapling have only had the procedure for a few short months or slightly more than a year and consequently it is difficult to assess whether in fact the procedure is a viable alternative to “spinal fusion” Granted Maria’s son is holding steady at 30 degrees and I sincerely hope he does well, but many would deem such a level of scoliosis moderate! There is no guarantee that children who undergo vertebral stapling will not require more surgery at a later date. They will end up with more metal in their backs. A better word for these staples would be sharp prongs! What if one of these prongs migrates to the aorta?
Why would parents willingly undergo a procedure that gives them no legal recourse in the event that something goes terribly wrong? By virtue of the fact that it’s experimental, gives medicos unlimited powers. There is no way vertebral stapling can in any way shape or form be a substitute for the Spinecor. I sincerely hope that vertebral stapling proponents take their bitterness/hostilities elsewhere and allow those who choose this non surgical alternative......peace!

Please do not be influenced by the opinion of a woman inexplicably biased against an excellent option for the treatment of Scoliosis. I find her behaviour quite sickening - why is she out to put people off this successful treatment?

[shaes mom]

txmarine mom

To txmarine mom:

You seem to be very much on the defensive.

To you first question I referred to "surgery" because that is how Cara worded it.

PS We also have Harvard Pilgrim Insurance, and we were very surprised that they did in fact cover 100% of our son's surgery - and I credit Dr. Hresko/Children's Hospital for fighting this for us.

You're absolutely right, I don't know the difference between stapling and surgery. I do know about the surgery but I don't know about stapling. I am fairly new to all of this and that is why I asked for comments and suggestions. Any choice anyone makes for their loved ones is their decision and I believe it's the right one for them. I didn't mean to offend anyone. All I'm trying to say is that's it's been a huge blow to me (even though I know I'm just starting out) and I can empathize with everyone here and all their circumstances. Any procedure (whether it stapling or surgery or whether for good or bad) is scary to me, that's all I meant.

As to your 2nd question about the "spine nurse". My husband and I stopped by the Orthopaedic Dept. of Children's just to inquire if any of the doctor's were knowledgeable with the Spinecor brace and if they used it. We were referred to what they called a "spine nurse" (one of the nurse's that works with the doctors in the department - kind of self explanatory I think but I guess I can't assume anything).

Lastly, you inquire what my husband's "profession" has to do with it. This, I'm sorry, I'm really taking offense to. My husband's title is "Clinical Specialist of Education and Professional Development of Rehab at New England Baptist Hospital which is one of the leading orthpaedic hospitals. He understands physiology which is why it is relevant. The world, as we all now know, isn't flat.

I'm not here for arguments. What my husband and I choose to do for our daughter is our business and what WE feel is right for her. Yes, I asked for comments and suggestions. What I really meant was "helpful" comments and suggestions. We're going through enough right now without having to deal with negative attitudes such as yours. Please don't respond as I don't have the energy to deal with people like you.

Shae's Mom

[desheah]

theresa,

i promise an e-mail tonight about those letters sent to hphc. last night was crazy here.

also i would like to say that as a newer parent coming on the board to ask questions and invite comments, perhaps the tone should be a bit more welcoming. her daughter isn't even being treated yet with a brace and she is looking into the options -- of course, vbs is one but not for a child with an 18 degree curve. let's give everyone who comes on here for support a little time to ask their questions.

my best,
deshea

[shaes mom]

Thank you Flower Power for understanding what I was writing. That's all we were doing, INQUIRING. It seems like some people are just waiting by their computers to pounce on you for everything you state. We need more positive here and need the support of each other, whatever one decides to do.

Shae's Mom

[RugbyLaura]

shaes mom, I'm so sorry not to have welcomed you sooner. I felt that I had no useful input for you as we're in the UK. I wish your daughter all the very best with her Scoliosis journey!

My daughter has been wearing the Spinecor brace for 9 months now & I am happy to answer any questions you have.

Laura

Edited just to say that in the UK we do not (generally) use medical insurance.

[shaes mom]

Deshea,

I understand completely, don't worry about it. In addition to scoliosis we all have busy lives. I can appreciate that. Actually I was so exhausted today that I didn't deal with any of it. I will make my calls tomorrow.

I can't tell you, especially after what's been posted to me today, how much I appreciate your support. With one exception everyone has been terrific and extremely supportive. I truly only mean well and I sincerely hope I haven't offended anyone. It is not my intention. Every child is a gift and my heart doesn't ache for just mine, but all of them. I truly hope that some day soon they will come up with something that works for everyone and we can all be on the same harmonious page.

Take care,

Theresa

[shaes mom]

Rugby Laura,

Thank you so much for your support. I was surprised when I logged on today to face what I faced. I would love to hear about your experiences with the brace. The way my husband and I figure it, what have we got to lose. She's at 18° now and they won't hard brace until 25° so why not try it. I don't understand why after the favorable reports that were published in the Orthopaedic Journal that it's not catching on faster. Can you give me a summary of what your experience has been like?

Thanks,

Theresa

[shaes mom]

Jill,

I'm sorry I haven't posted to you. Thank you for welcoming me yesterday. I thought I had posted (or I did have the intention of) to you yesterday. I'm having a little bit of difficulty getting around these boards. I'm learning a little bit at a time here.

Thank you for sharing some of your story. I'm glad your daughter is doing well and remains active. Also, thank you for the information on the stapling. In fact, thank you for explaining it to me rather than berating me for not knowing what it was. I had seen it mentioned before and I don't know why, but I hadn't researched it. I guess I've been so focused on just the bracing for now but if it's an alternative to fusion surgery it sounds better to me now.

By the way, since my husband does work with a lot of adult scoliosis patients (not pediatrics) he has been sharing with me some of the psycological problems they have. I will (as I am sure all of you would) climb to the ends of the earth to avoid that. My husband's cousin had the Harrington rods inserted when she was a teenager. She had to move to Hawaii (probably 20 years ago) because the cold just killed her back. She's has had more problems in her adult life because of it.

[RugbyLaura]

Theresa, I'm off to bed now but will give you a run down on our experience tomorrow. When I first discovered this forum - over a year ago - I spent many nights reading this whole thread & taking notes. I still get confused over who is who! Yes, we have had some very sad high profile "failures", but these children's curves were high when treatment with Spinecor commenced. My daughter is in this category too and I have always stated that I do not expect her to avoid surgery - but I am confident that we are doing our very best for her. Your daughter has a much better chance of avoiding surgery. The hostility that Spinecor generates in some people is hard to understand...

I'm rambling again - must go to bed!! "Speak" tomorrow....

Laura

[shaes mom]

Does anyone who goes to Montreal for Spinecor know what the prices there are? The brace, fitting, appt. x-rays, etc.?

Theresa

[pat]

Does anyone who goes to Montreal for Spinecor know what the prices there are? The brace, fitting, appt. x-rays, etc.?

Theresa

We've been going to Montreal since our daughter was diagnosed with a 21/17 curve over 2-1/2 years ago. She's been holding consistently with a "6, and gained over 4 inches in height. The cost of brace is $3,000, x-rays are about $325.00, and Drs. Rivard and Colliard's fee, I believe, is $80.

We've been very pleased with our visits to Montreal and with the Spinecor Brace.
p

[christine2]

Theresa

I just want to tell you that I have learned about so many treatment options at this forum. This is were I first found out about Spinecor. The people here steered me in the right directions and answered all of my questions. The parents here a GREAT source of GOOD information

HI Pat!!!!

[pat]

Hi Christine!!!
p