spinecor

[Celia]

So Pola, I suppose everybody on cyprus always knew that Marcos Bagdathias was going to make it big one day (and all remember him as a little boy going to the villageshop.......) Is everybody very excited?

We have been struggling a bit at night with the left side of the pelvis base causing quite a bit of discomfort and numbness on the left side of the pelvis (just under the ridge) Wonder whether the (back) plastic anchorpoint is too much forward. Where is it exactly meaned to sit, in Lisanna's case the most lateral edge definitely has "taken the corner" and comes to about half way the site.(left and right i.e. symmetrical) Should it stay on the back only? Do I make myself clear? (it is like trying to describe the mona lisa texting, (what am I on about now....????)) right site isn't an issue, but that would be because most tension is in the left

gerbo

Gerbo,

You lost me on Marcos Bagdathias Who is he ? Is Lisanna not comfortable in the brace ? Deirdre has never complained and the plastic pelvic section was never an issue. The only thing that is problematic is the chafing on the legs from the straps. I would give the ortho a call ! I still don't see how you can put on the cycle shorts without messing with the entire positioning of the brace, I mean isn't that the whole purpose of the body suit ? Last question ..... when the ortho measured 21 degrees was that with the computer program ?



celia

[mariaf]

LATigner,

Having a daughter who will turn 15 on May 1st, I can truly feel your pain with regard to the typical teenage menatlity!!

Good luck,

[gerbo]

You lost me on Marcos Bagdathias Who is he ?

Oh, you inhabitants of the arctic wastelands, the rest of the world could be wiped out by avian flu, and you wouldn't know ( , sorry, that is so unfair, I know, I humbly beg forgiveness) anyway he apparantly is somebody from cyprus who made it to final of australian open (tennis) as a PLAYER i mean, not a spectator

I still don't see how you can put on the cycle shorts without messing with the entire positioning of the brace, I mean isn't that the whole purpose of the body suit ?

putting it on isn't the issue, it is taking it of or pushing it aside or whatever you do, when going to the toilet which seems an issue

Last question ..... when the ortho measured 21 degrees was that with the computer program ?

no, pencil, ruler and angle-thingy

About the plasic bits, the two back ones are they on the back only, or do they "take the corner" towards the front??

[cyprusmom]

[QUOTE=gerbo]Oh, you inhabitants of the arctic wastelands, the rest of the world could be wiped out by avian flu, and you wouldn't know ( , sorry, that is so unfair, I know, I humbly beg forgiveness) anyway he apparantly is somebody from cyprus who made it to final of australian open (tennis) as a PLAYER i mean, not a spectator



Thank you Gerbo!!!!
Yes the whole of Cyprus is going TOTALLY crazy with Marcos Bagdhatis and it's actually the reason I haven't been on the forum the last few days!!! I would only check the Australian open tournament website!!!
Both of my kids are watching the matches like crazy and want to hit tennis balls every day!!
And it actually took my mind off from constantly checking my daughters posture, shoulder blade etc.( Although I did wonder if tennis was good for her and using one arm what would that do to her rotation of the thorax)
Anyones' daughter/son plays tennis?

I am a Cypriot ...yes plain Cypriot but of Greek origin, Greek Cypriot, (politically correct way to say it?) Ok political issues on Cyprus that will get our Northamericans all baffled , (first Bagdhatis, now politics...) so no more on that.

Ok, I am going back to the australian open website.........
Pola

[cyprusmom]

[QUOTE=LATigner]We went to Dr. Ron Marinaro in Studio City (he is affiliated with Dr. Deutchmann in New York) in October. Her curves had gone up to 36 and 42 - very scary. At her one month check-up they were down 10 degrees to about 26 and 32. QUOTE]


Welcome on the forum. That's a great correction your daughter got, I hope she keeps it and hopefully have more.
I was wondering about Dr Marinaro who is the only one listed on the Spinecor site in California. Could you give a brief inside on your visits with him? The reason I am asking is that we spend many of our summers in Southern California and although my daughter is seen by a great orthotist and orthopedic in Greece, I would consider seeing him this summer if we are there just for a check up.
Is it difficult to get an appointment with him? Friendly? Is he an orthotist or chiro?
Thanks,
Pola

[LATigner]

To Cyprus Mom

Dr. Ron (that's what everyone calls him) is great. He's very laid back and good with teenagers. My daughter really likes him (and that's saying a lot because she's pretty sick of the whole thing.). He is a chiropractor and has taken all of the SpineCor training. He has all the latest testing software, etc. My daughter's chiropractor from Tustin who has been our primary doctor for the last 3 years went with her to her first visit and was very impressed by SpineCor. He (Dr.Gorrie) has been doing his own research and treating scoliosis for about 15 years. Dr. Gorrie also went to a SpineCor seminar last weekend because he has 3 patients using the brace and may bring it to his own office. The seminar was attended by the head of orthopedics from one of the Texas University hospitals so it seems like the traditional medical doctors are opening their eyes to something besides surgery as the cure-all.

Appointments are easy to schedule - he is open some Saturdays too. I would be happy to answer any e-mails if you have any other questions.

[Celia]

[QUOTE=cyprusmom]

Oh, you inhabitants of the arctic wastelands, the rest of the world could be wiped out by avian flu, and you wouldn't know ( , sorry, that is so unfair, I know, I humbly beg forgiveness) anyway he apparantly is somebody from cyprus who made it to final of australian open (tennis) as a PLAYER i mean, not a spectator



Thank you Gerbo!!!!
Yes the whole of Cyprus is going TOTALLY crazy with Marcos Bagdhatis and it's actually the reason I haven't been on the forum the last few days!!! I would only check the Australian open tournament website!!!
Both of my kids are watching the matches like crazy and want to hit tennis balls every day!!
And it actually took my mind off from constantly checking my daughters posture, shoulder blade etc.( Although I did wonder if tennis was good for her and using one arm what would that do to her rotation of the thorax)
Anyones' daughter/son plays tennis?

I am a Cypriot ...yes plain Cypriot but of Greek origin, Greek Cypriot, (politically correct way to say it?) Ok political issues on Cyprus that will get our Northamericans all baffled , (first Bagdhatis, now politics...) so no more on that.

Ok, I am going back to the australian open website.........
Pola

Ummm....I'm not a tennis fan Besides, it's not like Marcos Bagdhatis is making front page news here in Canada ?! Does he have nice legs ?? Gerbo, I like the avian flu example

[BlueCrystalMan]

Thanks everyone... Yes, gerbo, I am a dad, so you can be lonely no more!

Not sure any of you know, but my last phone call to Dr. Deutchman last week I found out that his appendix had burst right after our visit and he was hospitalized. As of that last call late last week he was still in the hospital but doing fine.

Its been just about two weeks since Nick has been wearing the brace and most times he forgets he has it on... its at the point now where we actually have to remind him to take it off for the two hour break (darn pre-teens!)... although his exercises only take about 15 minutes, he doesn't remember them either... but he does remember to fire up the video games!!

Also wanted to let you know that the insurance battle has begun. Of the $5,600 bill that we had to pay up front, Blue Shield only paid $1,668 of it. Their reason for the denial is that we went out of network to Dr. Deutchman. I have just completed my appeal letter stating that Dr. Deutchman is the only provider in the country, and I've built my case for the SpineCor brace. I'm really hoping that this isn't going to be a long, drawn out battle.

[Celia]

BlueCrystalman,

Actually dr. Deutchman is not the only provider in the U.S. If you go to the Spinecorporation site you'll see that many hospitals prescribe it as well. I know there are a lot of people in this group that see dr. Deutchman and I certainly don't want to say anything bad about him, he sounds like a WONDERFUL man. The only thing that I question is the fact that he's conducting "ear" and "eye" analysis/tests prior to prescribing the brace which doubles the total cost for the brace from ~ $3,000 to $6,000 for families. I consider these tests questionable and basically a money grab. When I saw dr. Rivard no such tests were conducted !

[MATJESNIC]

spinecor

Bluecrystal,
I just sent my appeal because we have Blue Cross/Blue Shiel of Texas and so far they have only agreed to pay 200 and something for the brace. My almost-12 year old daughter is the same way. She doesn't mind wearing it at all. But she hates having to take it off and then put it back on again. She also hates the exercises.
I just called Dr. Deutchman to schedule Nicole's April appt. and nobody told me about him. I hope all is well.
I agree that he has a wonderful personality, especially with his young patients. As far as the additional testing goes, who knows? I do think that if someone didn't want to have that testing done, it would have been okay. But it made sense to me and at this point, I am open to possibilities.
There is another boy who goes to Dr. Deutchman who is your son's age. Maybe they would like to send each other e-mails or something. There are not many boys around here who are wearing the spinecor.
I am so glad we started in Sept. because this summer is going to be challenging. There will be days at the beach without the brace on. We also have spring dance competitions and recitals where Nicole will not be braced. I am glad we had all of this time to follow the 22 hour bracing rules. Soon we will be breaking them. Her 5-month anniversary is just days away.
Melissa

[Celia]

As far as the additional testing goes, who knows? I do think that if someone didn't want to have that testing done, it would have been okay. But it made sense to me and at this point, I am open to possibilities.

I don't believe there is a choice, somehow people are brainwashed into submitting to these ridiculous tests.

[Sir Jeffrey]

Sorry if I'm out of line here but here's my two cents worth. Sometimes we as parents want to trust the doctors so completely that we agree to whatever they want. My question is this: is the doctor using the results of the eye and ear tests for research? I read somewhere that someone was asking about poor eye sight being associated with Scoliosis. Someone has to do research because if someone doesn't, where would we be with our kids? No matter what the cost, if I thought a test would help explain the reason for Jamie's scoli. I'd do it. In fact, I have taken her to a Neurologist to find out if her scoli. is caused by an underlying neurological condition.

Always remember that as a parent you have the right to refuse anything you don't feel comfortable with. Most doctors/nurses aren't use to parents refusing anything, but they will follow your wishes. At one of my daughter's appts. they wanted to x-ray her and I refused. The nurse told me she never had anyone refuse x-rays and she needed to ask the doctor if that was okay. I didn't care what the doctor said, I am her mother and my word was final. The doctor agreed with me that she didn't really need the x-rays, but it was just part of their normal routine to x-ray every scoli patient before the doctor sees them.

Mary Lou

[Celia]

Sorry if I'm out of line here but here's my two cents worth. Sometimes we as parents want to trust the doctors so completely that we agree to whatever they want. My question is this: is the doctor using the results of the eye and ear tests for research? Mary Lou

Mary Lou,

Dr. Deutchman is a chiropractor, what kind of research would he be doing ?

[MATJESNIC]

Neurological testing

Hi all,
The testing was actually neurological testing. It wasn't done by Dr. Deutchman. It was done by another Dr. whose specialty is neurology. It was very extensive. Nicole has some exercises that she does to address some of the results. She also does some balance exercises on a wobble board.
As far as refusing x-rays, my Mom did that all the time with the Dentist. She was very conservative in that area when we were growing up. We have never had a problem when we refused x-rays.
We will only do what we feel comfortable doing. For example, we don't have Nicole adjusted because we don't feel comfortable doing that. Even though it was suggested as part of the chiro's plan for her, we refuse to do it. We have never been made to feel uncomfortable because of our decision. We have always been respected for it.We didn't grow up being adjusted. But I know people who have been adjusted by a chiro since birth and they swear by it.
When 2 orthos told us to use the Boston Brace, we didn't follow either of their advice. We don't let any doctor intimidate us. We have our own minds and we don't allow anyone to brainwash us.
Melissa

[cherylplinder]

Hello all Spinecor moms and DADS!!!
Rachel and I had a wonderful, if exhausting(the travel), visit with Dr. Rivard and Dr. Coillard.
I wanted to post our experience so all could benefit from it. If I run out of time (I'm slow), I'll continue later.
As parents, just as it is hard for our physicians, it is hard to buck the supposedly "tried and true." I had a really hard time, but had some mitigating factors.
Rachel has always been plump. She plumps up in the winter, when it is rainy and cold. And slims down in the spring, when the weather is nice, and in the summer, when we swim all day.
This past summer, Rachel was very ill. The cause was unknown, but her intercranial pressure went up very high and caused headaches, nausea, vomiting, papilledema(swelling of the optic nerve which can lead to blindness), and retinal hemmorhages. She was in the hospital on and off all summer, and they gave her a medication that did not allow her to sweat. Therefore she could not go out to play. We usually have access to a pool, but were moving and did not. As a result, my little plump girl got down right chunky. I asked my pediatrician about it and he said to continue to eat right and exercise. He did not like to put young children on a diet.
In July, when we were still dealing with the increased intercranial pressure, we went for her 6 month check up for scoliosis. Her curves, which had been 18 to 19 degrees for 2 years, were up to 24 degrees.
I asked about bracing and exercise when she was first diagnosed, but the current thinking was that traditional bracing caused muscle atrophy(which it does), and should not be considered unitl 25 degrees. (I have since researched that an increase of 5 degrees over 6 months in certain curves is an indication for bracing or if curve is between 20 and 25 and child is premenstrual) OUr physician choose to watch and wait, probably because of the summer trauma to avoid putting her through anything new. In December, her thoracic curve had increased to 33 degrees.At this time our orhtopedic prescribed a TLSO brace.
I am not promoting anything. The following are my conclusions from the past few weeks. So take these conclusions for what they are.
Spinecor is a new advance in the treatment of scoliosis. It is not based on the traditional three point system(TLSO, BOSTON, etc) It has indications for curves under 25 degrees because it does not lead to muscle atrophy, but instead tries to correct postural and structural problems by strengthening the correct muscles and correcting rotation problems in the spine. It is FDA approved. From my research, the results in curves over 30 degrees are at least as good as results with traditional bracing, but I am no expert!
To continue, research indicates that traditional bracing is not as effective in children with a less than ideal BMI. Studies show that they have a 3 times greater chance of progressing to surgerywith traditional bracing (TLSO).
I contacted Dr. Paul Sponsell of John's Hopkins, who uses the Spinecor, with my questions, but he was not sure of results in children with a higher BMI.
I then contacted Drs. Rivard and Coillard with my concerns.
Dr. Rivard said he had good results in children with higher BMI's. He said they had not published studies on this. He was willing to evaluate her.
In the meantime, we tried twice to fit Rachel with her TLSO without success, as it did not help her curve.
Dr. Rivard and Dr. Coillard were very thorough, kind, conscientious, and informative. They were some of the nicest doctors I have ever met. They communicated with me as if I were on their level.
They did lateral, I think you call it AP(from the back), and supine xrays. He explained that her lumbar curve, even though it almost equals her thoracic curve, was a compensatory curve. Her thoracic curve measured 38 degrees, up 5 degrees from December 15th x-ray. He said there is always 5 degrees measurement error, but I don't know if the error is in our favor (33) or not at this point. Rachel's supine x-ray is 22 degrees, and he hoped to be able to correct her to a least that eventually. I asked if the bone deformity ever corrected with bracing, (i.e. structural correction, bone remodeling) and he indicated that was possible. He was very practical, without being unrealistic, giving hope, yet reminding me there were no guarantees.
Dr. Coillard and Souad (one of the other researchers) fit Rachel with her brace, performing the corrective movement and fitting the straps to that.
Rachel's rotation, which measured 10 degrees before fitting, went to 0. Her curve x-rayed in brace at 30 degrees.
Dr. Rivard did not give us any exercises, indicating the brace was "24 hour" physical therapy, when I asked about P.T. Dr. Coillard helped Rachel put on her brace until she and I felt comfortable doing it on our own.
I pray this is an answer for us.
They were some of the kindest, most humble doctors I have ever met. Their total dedication is to children.
Hope this helps someone!
I will try to post some of the websites I found informative in case others have missed them on this forum.
God Bless!!!!
Cheryl