Lewis Sayre's scoliosis treatment

SpineCor Brace Review and Photos

  Made the trip to Seminole yesterday. Wasn't bad at all about 2.5 hrs. Makenna is now officially wearing her SpineCor brace. Dr. Brian is awesome! Very compassionate and personable. We were in the office a total of 2.5 hrs and he was ready for us when we got to the office. We started with a consultation followed by a set of xrays. We found out that Makennas top curve was not 40 but he measured it with a digital device at 36 degrees. We are excited about that finding because the thoracic (top of back) controls your cardio and lungs...your lumbar (lower region) controls hormones,pregnancy and things like that. Her lower was still measuring at 49 degrees. She got fitted for the brace. The shorts fit snug and is your "anchor" to the straps that Velcro around it. He had us take turns at helping her put it on. She caught on fairly quick. It is a little confusing but one of those things you just get used to. He said it will take about 3-7 days to fully get comfortable with it. It is best to wear it with a cotton tighter fitting shirt underneath and volleyball (spandex shorts) on the bottom. Going to the bathroom is not that big of a challenge...once you have the brace on you can just unvelcro your 4 bottom straps and pull the shorts down. And then reconnect when your done. Makenna said it felt very tight and her back actually hurt when she took it off for a bath and wanted it back on. After fitting for the brace he did another set of xrays and the curve had been moved from 36 to 30 on the top and from 49 down to 36 on the bottom! We were all excited about this. That doesn't mean it will correct to that degree but it helps to know her spine is flexible. The Dr. suggested us buying a rowing machine to help strengthen her muscles. I found some on Walmart.com for $79 bottom of the line to $299+top of the line. We are going with the one for $149 it got great reviews for people who weigh less than 220lbs.

    Makenna said she was a little uncomfortable sleeping last night with it. She tried putting on jeans today but none of them fit. I am contacting Dr. B to ask him if the shorts can be adjusted at all. If not we will improvise somehow. I have a few ideas =)

Her Spinecor brace Cost $4500 (remember all visits are different..the typical price is $4200-$4800) The paper we signed stated that there was a 10% chance it would not correct her curve. I think we will take our chances with it though! Anything is worth not having to deal with the surgery.

I also will be posting information on RISSER scoring. We did not know anything about this and how it effects your scoliosis prognosis. I will touch more on this later.

Dr. Brian Oullette w/Makenna

Kenna First day of school with Brace on-SHE ROCKS! The FACE of SPINECOR =)

Her clothes over the brace...not very noticeable with loose fitting clothing

Getting fitted for brace

Bottom of brace that she is having some trouble getting bottoms around

SPINECOR BRACE for Scoliosis

Makenna will be getting her SpineCor brace tomorrow in Tampa! We are so excited that we have found this bracing alternative and that it looks promising. Makenna is not as excited as she will have to wear this 23 hrs a day and of course being a teenager and not being able to wear tank tops and go swimming in the summer (well we live in FL so its 80 degrees today) it kinda sucks to her BUT the only alternative is surgery. I told her a yr or so out of her life will be worth avoiding surgery if we can.

  HERE IS THE ACTUAL WEBSITE FOR SPINECOR

http://www.scoliosisspecialists.com/

Just an FYI I am not getting paid to endorse this company I am just creating a blog where I can record Makennas progress and give everyone else out there an actual REAL review of if it worked for our daughter! And I really hope and pray it does..

When I first contacted Scoliosis Specialist I got a return call back from one of the dr's who invented the brace. She was very sweet and answered all of my questions. Our luck has it that Dr. Brian who is also one of the creators of this brace will be the one fitting my daughter for it in Tampa. He is flying in tomorrow and will be meeting us at a chiro office who works with this type of brace.

The secretary who calls me is the nicest person ever. She is just a genuinely nice person who gets right on what needs to be done. The only issue I had so far was with our insurance. The dr office let me know they called my insurance and they would need pre-authorization for this type of procedure and then it would be covered by our insurance. We have Blue Cross Blue Sheild Tenn. Our out of network deductible is $5,000  and the cost of the brace is $4600-$4800 for the brace...so basically either way we are paying for it. Every 3 months we will need to take our child to the chiro $290 a visit for xrays and exam and adjustments of brace if needed.

Not sure how long she will need to wear this yet. She is still growing so I am guessing until she is done with her growth spurts.

Here is a picture of the BRACE

 

My daughter has a ton of questions...how do u go to the bathroom in it? etc. So I will be answering all of these on the blog after the apt tomorrow!

They are boasting an 89% success rate BUT the dr did tell me for Makennas degree of curve she is hoping to halt the progression and hopefully correct it by 5 degrees..which is fine with us.

She said in curves 36 degrees and less the rate of success after 5 yrs having the brace off was about 90 some % so that is wonderful.

Scoliosis Diagnosis

This blog is going to be an outlet for me to vent through my daughters Scoliosis Journey. If other parents would like to comment/or have questions or concerns feel free to post and I will answer back each and every message!

I have had a hard time finding information on what I am looking for regarding her treatment...so I think if I can be of any help to others by posting my daughters story and any information I find helpful-this will be worth it!

Here is a picture of my beautiful 13 yr old Makenna

 

She is super athletic-plays competitive bball,volleyball,tennis. Part of the National Honor Society,Gets straights A's and is truly a role model.

Her diagnosis came to us as a total shock. Day One (which was last Tuesday so almost a week now) was a total blur. We were awake all night just in a daze googling everything we could get our hands on to make sense of this!

Since then we have gathered as much information as we could find and have made a decision regarding her treatment.

 

Day One (was the diagnosis) Shriner Hospital Appt Tampa,Fl. Dr. Dakwar.

He had confirmed she had 3 curves in her back. The curve near her lower back was the worst at 49 degrees the center was 40 degrees and we didn't get a degree on the one near her neck he just said a slight curve. We had taken her to a chiropractor after getting a school sports physical because they said they could tell she had a curve. We knew from a couple yrs ago she had a slight curvature and my husband is a physical therapist so he kept an eye on it but it did not look bad. She also has had no serious problems like severe pain or a limp.. The chiro said her cruves were at 28 and 36...WAY OFF! That was a couple months ago so who knows how much more it cruve but im sure not that much. Anyways we are where we are right now and that is debating whether to go with the brace we found through SPINCOR. It is a soft brace that I had found while googling alternative braces and treatments for our daughters diagnosis. Dr's frown upon the hard braces because of the failure rate..but this soft brace SPINECOR looks promising. I will post all about this brace along with pricing and how it works in the next post.