spinecor

[gerbo]

our initial spinal surgeon was not particularly receptive to anything we suggested or asked. Eventually we concluded that his treatment did not meet our and our daughters needs and that there was better treatment available, so we had no choice than to make our own arrangements, i.e. switch treatmentcentre.

Never regretted it once.......

[cherylplinder]

Melissa,
I'm glad I'm not the only one that uses NSF to avoid things. I do feel that since the support here has helped me so much, I least I am doing something constructive by supporting others . I am always accused of looking on the bright side.
When we get through all this, if not before, we will have to meet and have some champagne!
Hugs
Cheryl

[mrf]

Does anyone have any experience with Dr. Paul D. Sponseller at Johns Hopkins in Baltimore, Maryland?

[christine2]

Hi Mrf

My daughter (6 yrs old) has been in spinecor for approx. 8 weeks and we are
having fantastic results.

to answer your questions

Our pediatrician was actually angy with me for not following her recomendation to follow the orthos advice that she recommended. It made me feel like a bad mother. After she heard the results of the spinecor brace she changed her tune.


We were reinbursed up to our deductable for durable medical (I think it was
$ 750 or $800.) all x rays were covered as well as O.V. I agree that you will have a bettewr chance at coverage if you see an ortho. Montreal was considerable less expensive than New York.

Christine

[Celia]

Mrf

Another thing to keep in mind about the spinecor brace is that it's not replaced as frequently as rigid braces. I don't know if this is the case with everyone else but my daughter might be wearing the same brace for another year or so....maybe longer if she doesn't outgrow it. I got the impression at the last clinic appointment that they discourage switching braces midway through treatment and prefer that children wear the same brace, provided it fits. As far as I know rigid braces are replaced frequently - every six months ?? We have replaced a few pieces like the crotch straps and we got an extra set of elastic bands which I found essential when the other set is washed.

[MATJESNIC]

Regarding what to do when the orthopedics don't support your decision to use Spinecor

We met with a very nice orthopedic at Shriner's who told us that no matter what happens with Nicole and the Spinecor, we should not blame ourselves. We chose what we felt was the best brace for her and if it didn't work, we should not waste time feeling guilty. I thought that was a very good statement.

I think deep down inside, many of these orthopedics don't believe that hard bracing will work anyway, so the fact that we are trying something different doesn't make them feel that we are ruining our kids' chances of avoiding surgery.

When Nicole was prescribed the Boston, I know that the orthopedic was thinking that she will probably need surgery eventually. So in that regard, what are we really losing by trying the Spinecor.

Sorry for rambling. Not sure if what I wrote even made much sense to y'all.

Melissa

[mrf]

Has anyone gone to Montreal to be fitted and then continue treatment with your "local" Spinecor doctor/Chiro?


MATJESNIC/Melissa,

Your daughter, Nicole is being treated by Dr. Deutchman in New York? Are you from the area? Did you consider going to Montreal to see Dr. Rivard? What are your thoughts on Dr Deutchman? If you would prefer, private e-mail is fine. I have an appointment for my daughter with Dr Deutchman for next week but am seriously considering traveling to Montreal and have my daughter fitted by Dr Rivard if we decide to go with the Spinecor.

[mrf]

I see that most people on this forum are very much in favor of Spinecor - or at least optimistic about it. Does anyone have any negative or neutral responses to the Spinecor brace? I don't mean to play "devils advocate" but I'd like to hear both sides. I know one concern is the lack of significant long term results data. Anything else?

[Christina_in_NC]

Melissa,
so you met with a doctor at Shriners? What led you from them to New York?
We were going to go to Erie - everyone on the phone there were extremely helpful - but Baltimore is half the distance and not having to deal with driving in winter weather is a big plus. We are looking forward to Dr. Sponsellor as we have heard such great things about him, but I keep wondering about Montreal or a chiro.
I feel good now about our decision to go to Baltimore, but I do wonder what factors other people consider that takes them from one clinic to another.
Christina

[gerbo]

I see that most people on this forum are very much in favor of Spinecor - or at least optimistic about it. Does anyone have any negative or neutral responses to the Spinecor brace? I don't mean to play "devils advocate" but I'd like to hear both sides. I know one concern is the lack of significant long term results data. Anything else?

actually, the quality of the long term data is very good, i.e., there is a large group of spinecor patients who have been followed for many years and there progression or otherwise closely monitored. This beats anything I have seen with regards to longterm follow up of any cohort of boston braced patients. Also, the outcomes in that large group are s o much better than any outcome I have seen in a hardbrace group, with the basic difference being that spinecor patients keep most of their initial correction, whilst hard braced patients fall back to their curve before bracing started.

The big problem remains, and if you have studied the whole spinecor thread, you would have come across this, that there is only one big study, which is ongoing, and that it is conducted by the actual "inventors" of the brace who have "competing interests", either financial or in professional reputation.

That is the one bit of "DOUBT" you just have to accept, a doubt which gets less and less as time goes on and we see our daughter (s) improving or remaining stable, and more than anything else, being happy with their treatment and leading a relatively unrestricted life. Look at various forums and see how many young people in hard braces just end up with surgery anyway and how their lives are being affected by their treatment, it is clear, whatever treatment you choose, there is no garantee for succes. In the end you just weigh up all relevant factors and go with what feels best to you and your child. If surgery is the eventual outcome; so be it, at least you've tried your best. (and I keep on saying; surgery tends to be very succesful and manageable these days)

[gerbo]

ofcourse, the other bit of doubt is the "dr Weiss" study, an issue which i raised with the mr mills of spinecor, see post nr 8 of this thread (that's a long time ago) for my query and his reply

[mrf]

I actually asked Dr Rivard about the Weiss study and he told me several things:

1 - the study was only with 12 patients
2 - When he and Dr Coillard went to Germany to meet with Drs Weiss and instruct them on the proper fiting of the SPinecor they did not agree with Dr Rivard's directions as to how to fit the brace. He said that they insisted on fitting the brace as a three point brace which, according to Dr Rivard, is not the correct way to do it. Dr Rivard said that he trained their orthotists to do it the correct way but that when they went back to Germany, they were not fitting the Spinecor correctly.
3 - He did have follow-up consultations with Drs Weiss and that when he (Dr Rivard) showed his additional study results, Drs Weiss agreed with Dr Rivard but that was after their study was already out there.

[gerbo]

interesting....... , shame dr weiss never placed or published any correction, as his "study" is now in the public domain and being quoted. Just shows how much dodgy science is going on.....

[MATJESNIC]

Christina,

We were going to Shriner's in Phila because they are orthopedics and our Spinecor Doctor in N.Y. is a chiro. We didn't feel comfortable only going to a chiro. We wanted Nicole to be monitored at Shriner's because if she needs the spinal fusion, that is most likely where she will have it. Don't misunderstand, nobody at Shriner's in Phila is supporting our decision to go with Spinecor.

Nobody led us to N.Y. We saw the site, talked to the chiro there and began treatment there. It was the closest center to us and the chiro has extensive experience with scoliosis.

What led us to Montreal was to get a 2nd opinion when Nicole developed a 2nd curve. The orthos there made some changes to the way Nicole wore her brace and we decided to just go there from now on.

Melissa

[gerbo]

melissa, did they comment at all on the way dr D had applied the spinecor, do you feel what they did was substantially different?

have you slept a bit better??