spinecor

[cherylplinder]

Those are lovely! What are they?

[Celia]

Thanks Cheryl

They are Spring bulbs.....the white ones are called "snow drops" because they're very hardy and bloom even with snow on top of their heads. The purple/red ones are crocuses and they're almost florescent in colour. It's no wonder Spring is my favorite time of year...

[cyprusmom]

Celia saw my post on the surgery thread asking info about dr. Masso of the Shriners hospital who believes my daughter should have surgery right now. Thank you Celia for thinking of us. I was indeed shattered although always knew her high risk she is in. Just couldn't find the strength to post our news on our group...I am not ready to leave the Spinecor group yet and at the same time I need to find out more about surgery.
What happened with the Shriners doctor is that we had a second telemed conference with him last week and he had new x-rays and MRI results in his hands. He found her curves in the 50s(!!!!) and needing immediate surgery. Did not recommend rigid bracing. The human error in the reading of the x-rays makes me wonder though: Her initial x-rays in October, were read as 32degrees by the radiologist who took them and then as 40 by the orthotist in Greece. The new ones from 2 weeks ago were read as 50+ by dr. Masso and as... 25-30 by a local orthopedic.....My question is whether there has been a progression of her curves or if they have been stable. This we will I hope, find out in 2 weeks when we go to the spinecor orthotist and orthopedic in Greece. I also got a reply from the Spinecor doctors in Canada who saw my daughters photos and x-rays and said that it had been fitted adequately. Taking one day at a time now and trying to stay positive.
Anyone having a follow-up coming up?
I need some good news .....
Pola

[Celia]

What happened with the Shriners doctor is that we had a second telemed conference with him last week and he had new x-rays and MRI results in his hands. He found her curves in the 50s(!!!!) and needing immediate surgery. Did not recommend rigid bracing. The human error in the reading of the x-rays makes me wonder though: Her initial x-rays in October, were read as 32degrees by the radiologist who took them and then as 40 by the orthotist in Greece. The new ones from 2 weeks ago were read as 50+ by dr. Masso and as... 25-30 by a local orthopedic.....My question is whether there has been a progression of her curves or if they have been stable. This we will I hope, find out in 2 weeks when we go to the spinecor orthotist and orthopedic in Greece. I also got a reply from the Spinecor doctors in Canada who saw my daughters photos and x-rays and said that it had been fitted adequately. Taking one day at a time now and trying to stay positive.
Anyone having a follow-up coming up?
I need some good news .....
Pola

Good news is.....Spring is here ! Sorry, I know this is not what you want to hear. I have never heard/read of a discrepancy being so large ! Do you have the x-rays with you ? Does the most recent x-ray "look" worse ? Maybe the doctors are using different vertebrae as the starting point to measure the Cobb ? I have a question....doesn't the Spinecor system use a computer program to measure the Cobb ?

[gerbo]

Pola, what a difficult situation for you and your daughter and so sad to hear that for "one of us" things are not going right. We have our 3 months review in 2.5 weeks, with an x-ray and I so much hope to have some positive news (for merely selfish reasons).

What would I do in your situation? That large variety i measurements seems so odd. I assume that the 50 degree is without any brace? Was that done in cyprus, with the x-rays digitally send over to the USA.?? How can one person read it at 25-30 and somebody else at 50 degree?? I find that so hard to believe. Will you get new xrays done in Greece? Or are you taking the new ones over to be looked at by your greec orthopaedic surgeon?

Two questions to ask I think 1) Is that 50 degree a realistic measurement, would it be worthwhile to ask dr rivard now you've got a link with him anyway. What would he do in this situation? (he must know the limitations of the spinecor) and it be interested to know what he would do at this stage

2) would it be "safe" to wait a further 3 months with further x rays at the end to see whether the picture is consistebtly progressive?

The eventual outcome (surgery) might not ne any different, but it could change the timing, what must be important I would imagine.

Whatever Pola, in a few years time, you'll be sitting on your patio, between your whitewashed walls, in the sun, looking back on this time in your life as being absolute hell, but then looking at your daughter, having had surgery or not, being absolutely happy with who and what she is, not having any restrictions (and no nasty brace to wear) and you'll be asking yourself; why did i ever get so worked up. Things will be ok in the end, whatever path you'll have to take

best wishes

gerbo

[AILEA]

Pola,

Sorry to hear that things are not going OK; I´ve thinking about you this last weeks,but I didn´t realized you were posting on the surgery thread...

I can understand that there is a margen of error, but the differences you are talking about are too large (from 25-30 to 50, measured in the same x-rays?)
I suppose you will get new x-rays done , and at least you could have "the real measurements" you need to make a decision. As Gerbo said, things will be oK in the end.

Best wishes

Ailea

[MATJESNIC]

First you must get the facts

Pola,

It is unfortunate that you are getting mixed messages about the x-rays. That is one reason why you are so confused about what to do. As soon as you know what the "magic number" is, you can make an informed decision. You and Anastasia are in my thoughts and prayers.


Gerbo, your post brought tears to my eyes. You are right. Hopefully, what we are all going through will be temporary. There will come a point when we are thinking of things other than scoli, curves, braces, surgery.

As much as we don't want surgery for our girls, we are fortunate that we have an option of surgery for our girls.

Melissa

[cherylplinder]

Pola,
I also found the difference in x-ray measurement unacceptable. There should only be a 5 degree margin of error.
I am so glad Gerbo thought of asking Dr. Rivard about the new x-ray.He's right, since you already have that link, I would use it. I pondered for a while and didn't think of the obvious. It would be a relief to know what the actual measurements are. You just want to know where you stand.
Holding your hand from afar........
Cheryl

[pat]

Hello! We had our 5-month check up in Spinecor Brace last week, everything looked great, the brace is still holding her curve at a "1." Actually, I think I posted it was a "0," back in November. She's also grown some in height, so that's encouraging. Pat

[cherylplinder]

Pat,
Wahoooooooooooo! Let's have a party!
Spinecor may not work for Rachel, but I rejoice with every excellent outcome that we have. They feel like miracles to me. I believe that they are. To me, 20 to 0 is a miracle. Miracles bless us all!!!!!!
Your good news fill my heart with such joy! I am so happy for you!
God Bless. You deserve it!
Warm Hugs,
Cheryl

[gerbo]

Hello! We had our 5-month check up in Spinecor Brace last week, everything looked great, the brace is still holding her curve at a "1." Actually, I think I posted it was a "0," back in November. She's also grown some in height, so that's encouraging. Pat

Pat, please remind me (i@ve got a terrible memory), how old is your daughter, curve a t what level, largest measurement before spinecor and initial correction in spinecor and measurements along the way?

what a wonderful situation to be in though, congratulations!!

gerbo

[gerbo]

doesn't the Spinecor system use a computer program to measure the Cobb

i think that is just an additional feature of having xrays recorded and stored digitally. I saw them do it. The clinician still has to choose which vertebra to measure from and where and how exactly draw the line (on the computerscreen), but having done that the computer will calculate the angle, rather than having to use some geometric device. So, still scope there for interperson variability, but maybe slightly less.

[MATJESNIC]

So Happy for your Daughter in Spinecor

Pat,
That is great news!!! Please give us the details of where she was before the brace.

Melissa

[Celia]

Hello! We had our 5-month check up in Spinecor Brace last week, everything looked great, the brace is still holding her curve at a "1." Actually, I think I posted it was a "0," back in November. She's also grown some in height, so that's encouraging. Pat

Pat, absolutely the BEST NEWS !!!! Actually that's a 4 month followup It's great to hear that she's growing and the curve is holding at 0 - 1 degree!!!!!

[Celia]

i think that is just an additional feature of having xrays recorded and stored digitally. I saw them do it. The clinician still has to choose which vertebra to measure from and where and how exactly draw the line (on the computerscreen), but having done that the computer will calculate the angle, rather than having to use some geometric device. So, still scope there for interperson variability, but maybe slightly less.

Oh... that makes sense ! Thanks Gerbo.