New to Spinecor--loving it so far

[J&JsMom]

Hi--My name is Donna and my daughter's scoliosis was diagnosed last year. Her first brace was a typical Boston brace--both of us truly hated that brace. I was doing some research and found Spinecor, within 5 weeks she was wearing her new brace. Her first day with it was this past Saturday, the 25th. We live in Kansas City so we traveled to Chicago to Dr. Tom Pappas. I found him to be truly sincere, professional-yet fun, and quite knowledgable. I guess I am writing all of that to let everyone know that there are actually Dr's out there that are willing to help, Dr. Pappas is one of them
My daughter's curves are at top 31 and bottom 36. She also has Marfan Symndrome so if anyone else out here has a similar situation, I would love to offer and receive support.

I've read through many posts on this forum and I would like to offer all of you and your children the best of luck. I beleive that with support and encouragement we can all get through this together.

[MATJESNIC]

Hi Donna,

Welcome!!! I wish your daughter success with the Spinecor brace.

[momw/scoli]

Hi Donna,
That is great news! I live in the Amarillo Texas area and am traveling to Houston to see Dr. Marco about the spinecor brace on September 20. My daughter has been through 3 braces in one year. Two Charleston braces and one Boston. The Charleston braces didn't work and she hates the Boston! She is 12 and in constant motion. We have a great Dr. but, he doesn't do the spinecor. I also have a daughter 9 who might be starting to get scoli so we are taking her also. How old is your daughter? I am glad there are other options for bracing besides the Boston. I look forward to the day when it is the brace of choice and we don't have to travel to get it. My oldest daughter's curves are 38L and 36T. I hope her curves haven't advanced too much for the spinecor. I'm also thankful for this board and all the good advice from other parents.

Becky
Mom to Brandon(15) Emily(12) and Callie(9)

[leigh9p]

Also new

Hello,

My name is Leigh and my daughter is Taylor. She is 14 and has just been dx with 27.6 T. I don't know the lumbar yet. We meet with her ortho next week, but he has told us on the phone that she should wear a hard brace and that exercises don't work. My daughter is very active and is mostly likely going to be miserable in a hard brace. We are seriously considering the Spinecor brace. We got some studies from Dr. Don Meyer which sound promising. I'd love to hear of others who've used the brace and had it work - especially someone in the 25 to 30T range. Also if anyone has been seen in No. California by a dr. who can fit the Spinecor brace.

We are all scared and shocked and as you know, just in a daze about it. To make matters worse, she was dx with type 1 diabetes last Oct. I don't think she can even wear a hard brace because she has to put insulin into her stomach - it's the only place on her with enough fat.

I've read through a lot on the board and you all sound like you've been through a lot together.

[RugbyLaura]

Hi Donna, Becky & Leigh,

We're fairly new to Spinecor, Immy's had it since June, but if there's anything I can help with, just ask!

Laura

[momw/scoli]

Hi Leigh! I am not an expert but, since your daughter is already 14 maybe she doesn't have much growth left. I think Spinecor offers the best hope for those with small curves between 15-30. You can go to the Spinecor website clink on the U.S. flag and find a Dr. in California. We picked going to an orthopedic surgeon over a chiropractor, but I think chiropractors offer exercises that will help. I am hoping that the Houston Dr. has some exercises my girls can do. I love that the Spinecor teaches the body good posture. I swear my daughter can still slump over in her boston brace. I really wish that last year I had started with a Dr. that offered the Spinecor but, we started with a nighttime only brace. My best guess is that parents whose children are doing well in the spinecor brace don't need as much support so we don't hear a lot from them on this website. I didn't find this forum until this summer when my daughter started wearing her boston brace. Good Luck and try not to worry too much.
Becky

[LATigner]

Spinecor Doctor in Ca

Hi Leigh,
We have an excellent doctor in Southern Ca. (Orange County) about 15 min. from the airport. He's been treating scoliosis for over 15 years, does physical therapy, etc. All the kids love him - he's very gentle and caring but very knowledgeable. He was trained by Andrew Mills (Spinecor brace manufacturer).
It's Dr. David Gorrie in Tustin. Phone (714) 544-9789. I'm sure he'd be happy to speak with you on the phone since you're in northern ca.

Best wishes, I know it's hard to make all these decisions. My daughter worth both a hard brace and then the Spinecor. It's way more user friendly!

Lori Tigner

[leigh9p]

Thank you

Thank you for your warm welcome. Latinger or Lori I think - I thought it was Dr. Marinaro that fitted you? We want to come see him. To the others that suggested the map, I've been all over the spinecor site but didn't find anyone who actually answered.

We just told her today and she was as expected to very upset. This is so hard. She feels it is so unfair and that Diabetes is enough to deal with. Now she'll be getting mouth braces and back brace in the same period.

She is 14, but hasn't got her period yet, so we think there is still a growth spurt coming - hence we are hoping she will be a candidate for the Spinecor. She was pretty emphatic about not wanting a hard brace.

Sorry, I didn't get back sooner, but I've been trying to reach the entire 148 pages on the Spinecor thread so I feel like I know you all by now. I'm not done yet though. ;-)

[cherylplinder]

Leigh,
My son has diabetes. Have you considered an insulin pump? William has one and we love it. Changing sites every 2 days is so much easier than shots. You can vary basal rates according to the different times of day so you can adjust for insulin resistance in the morning and the lack thereof in the evening and just past midnight, when they tend to go low. You can back off the basal rate when exercising. You can adjust the basal for hormonal fluctuations once she has her period. The increase in control and therefore ability to decrease Hgb A1c is wonderful. Some of the new pumps also have an ability to constantly monitor blood sugar. This feature is becoming more affordable to use and may be helpful for determining BG patterns even if not used on a continual basis.
Just food for thought.
If you need to vent about daibetes, let me know. I think I cried at William's highs for the first 7 years, literally. I know that sounds radical, but unfortunately, it is not an exaggeration. Diabetes is a tough adjustment.
((Hugs))
Cheryl

[leigh9p]

Cheryl,

Thanks for the note about diabetes. She is still honeymooning and having great A1cs so she isn't interested in the pump yet. Ironically, one of the reasons is that she doesn't want the thing hanging off her and she doesn't want the new one that attaches to your stomach because it would show through her tank tops. Which brings us back to the brace and how it will show. She sounds very vain, but really she's a pre-puberty freshman so pretty typical.

Good news though - we spoke to Dr. Marino in LA today and he is flying up to SF to train a new doc here and said he could fit taylor with the spinecor brace then. That will save us the cost of the trip to LA although I'm not sure we want to be monitored by a dr. so new to the brace. The other thing is insurance. I have terrible insurance with no hope of paying for it, but am hopefully going to have secondary insurance in oct. which might pay. I just don't think we should wait. Does anyone have an opinion on that? I also wonder if the new insurance could refuse to cover her as an pre-existing condition - can they do that?

[emarismom]

leigh9p,

Hi, my daughter was braced in June and we have"good" insurance (BCBS PPO)
and they have not reimbursed us a thing yet. The claim has been in appeal
for awhile now. I got the brace on my own as no ortho would even consider bracing my daughter until her curves get worse (I'm still trying to understand that logic). Anyway, the ortho is going to be giving you a prescription for a brace, you could ask the doctor to "prescribe a Spinecor brace". Since he most likely will not do that, then you need to ask the insurance company to pay "at least as much" as they would have paid for the hard brace. You may want to call the the insurance company and see if they "recognize" the Spinecor. If they don't then you will probably be in the same situation as I am. But at least you will have the peace of mind that you are being proactive with your daughter's situation. If you were to wait and her curves do progress, you would have regrets.

As for the other insurance, if it is through an employer then you may have a better chance at your daughter being covered. I have been wondering recently how my daughter's conditions (CM, SM, and scoliosis) will effect her
ability to get health insurance in the future. I have read on these forums cases of adults who were denied benefits because of having scoliosis as a pre-existing condition. Maybe we should all be thinking about universal health care in the future.

One final thought. My daughter was braced by a chiropractor from Georgia who was training a chiropractor here in Miami. The dr from Georgia braced Emily, but she is being followed by the dr who was in training here. Up until now we have been satisfied with the care of the new doctor. If I have questions or concerns, I can always call the dr in Georgia. I am sure he will be coming back here on a regular basis (I have seen him here in Miami twice).
If Dr. Marino is training the other dr, than I am sure he will be making multiple visits. You could probably schedule some of the follow ups to coincide with times that Dr. Marino will be in SF. Many people travel very far to be placed in a Spinecor brace. Personally, I feel very blessed to have someone nearby who is trained in the use of the brace, even if he doesn't yet have the same experience of the other drs.

[cherylplinder]

I wouldn't wait, insurance or no insurance. Rachel's curve progressed from 18 to 24 from January2005 to July 2005; then progressed from 24 degrees to 33 degrees from July to November 2005; then progressed from 33 degrees to 38 degrees from November to January. In all 20 degrees in one year with only about 2 cm, less than an inch of growth. Just my two cents worth. Not all children are the same , but regrets are hard to live with.

[rtremb]

Leigh:

My daughter's curves increased very rapidly while we were messing around with the orthotist trying to get the two custom made hard braces he made to fit her comfortably.

We are going to see Dr. Rivard in Montreal at the end of September. We are hoping he will think she is a suitable candidate for the Spinecor even though her curves are now quite advanced. I wish we had known about Spinecor sooner. I'd say - don't wait a moment longer than you have to put your daughter into the Spinecor brace.

[momw/scoli]

You never know what an insurance company is going to try to pull. We also have so called good insurance, United Healthcare PPO. Last year my husband was employed by a different company that also used United Healthcare. My daughters braces (two Charleston braces) were covered. When he switched companies the Boston brace wasn't covered. It is in appeal, but someone my husband works with said United Healthcare wouldn't cover any type of appliance used to straighten bone. They wouldn't cover his daughter's Boston brace and he has hired a lawyer to fight it. I am going to Houston just because I think it is the right thing for my daughter. Maybe I shouldn't because it is financially stupid and the insurance most likely won't pay for Spinecor. The thing that makes me the maddest about this entire ordeal is the fact insurance will pay $160,000 for spinal fusion but, won't pay to prevent it. Just venting!
Becky

[leigh9p]

Thanks everyone! I won't wait. By the way, my daughter's attitude about the whole thing improved in one day. I tell you, she is something. I just posted in another place (I keep forgetting where I've been ) about the apt. and questions about Dr. Ron Marinaro and the fitting. So I won't repleat that here.

One thing the Ortho said was that there is no proof that hard bracing weakens the muscle and that he has never seen that in a study. He also told me not to beleive things I read on the internet! Argh. Anyway, does anyone know of a study that proves the muscles weaken in hard braces? I'd be happy to send it to him.