spinecor

[pat]

curve progression

yes, curves can certainly change quickly. My daughter was a 10 thoracic and a 18 lumbar in May, and four short months later her thoracic progressed to a 33 and the lumbar to a 45! pat

[gerbo]

Pat, I know this is true, but it seems so incredible to me,( must do to you as well). Were there special circumstances to explain this??. Did she have an enormous growthspurt in those four months, any anatomical problems to take into account. Were the first xrays reliably measured? How old was she at the time?? Or is this kind of progression quite common?? (ignore my ignorance...)

[mariaf]

It's my understanding that vertebral stapling is an alternative to bracing and this *surgery* is being performed on curves as small as 18 degrees ! Now if someone were to argue bracing a curve as small as 18 degrees, they would be ridiculed.

Celia,

According to what I understand from talking at length to Dr. D'Andrea and others at Shriners in Philadelphia, stapling of an 18 degree curve is never recommended UNLESS there is another, larger curve. If a patient presents with both a 30 degree and an 18 degree curve, let's say, and they were going to perform surgery for the 30 degree curve anyway, then they might want to staple the smaller curve as well.

I have also spoken with several parents who took their kids to Shriners with curves in the low 20's, for example, and they were not advised to get the stapling even though in some cases that's what the parent and the child really wanted. One boy with a curve around 20 degrees who did not want to be braced, was even asked by Dr. D'Andrea if he could deal with bracing on a part-time basis, to which he reluctantly agreed. Dr. D'Andrea made a deal with him that should his curve progress above 25 degrees, despite part-time bracing, then she would agree to consider the stapling. The mom even commented to me that she was very impressed that Dr. D'Andrea didn't just want "another one for the record book".

I know you're not a big fan of stapling and you are certainly entitled to your opinion, as we all are. I always tell parents that stapling isn't for everyone - but it is another option for many patients - and for some, particularly teens (and I have two of my own so I can relate) they might prefer this alternative, even though it IS surgery, over wearing a brace - and that's a decision each family must make for themselves.

The point that I wanted to make is that at Shriners in Philadelphia anyway, they are VERY conservative when choosing the patients for stapling. I just wanted to clear that up

[cherylplinder]

Rachel's curve also progressed quite rapidly. She grew about an inch and her curve progressed from 24T/?L to 38T/18L in six months.

I would like everyone's input on a current delima. A friend's daughter had a 10 degree lumbar curve at the end of July. (X-ray done by GP and read by radiologist) I saw Caroline at that time and the curve was not visible to the naked eye. I saw her a couple of weeks ago and noticed that her hips are now uneven. She was seen by an orthopedic surgeon for the first time today. He did not repeat x-rays, but did find that her pelvis is now uneven by 3/4 of an inch. I think we are seeing rapid progression in this child, but his recommendation was to wait and x-ray again in December. What is your advice?

[bizzleber]

I've seen this famous quote many times and doctors use this reasoning to justify not bracing curves until they're past 30 degrees in some instances. While I don't agree with bracing a curve when it's 10 degrees, I think careful monitoring is appropriate.

I definitely want to do that. I'm just struggling with who to go see and what to say to my son (and how to say it without breaking down in tears and sobbing uncontrollably...). Pediatrician advised I go see the orthapedic doctor in her group, but I looked at his credentials and they don't say anything about scoliosis. How do you find the right doctor? I looked at the SRS list. But it seems just like picking from the yellow pages. I, of course, know noone in the greater New York area with this condition to trade notes with, but I'm sure there a lot of great doctors. Sorry, this is probably a topic for another forum...

[gerbo]

I am sure others in this forum can advice you who to see, so no reason to panic on that front. And really, no need to panic on any front, if he has scoliosis at all, it is minimal, it is more likely not to progress significantly than to deteriorate. If it gets worse and comes closer to the 20 degree, than you have time enough to institute treatment, which is likely to be effective. So again;NO NEED TO PANIC!

(ps, I can understand how you feel, considering what you might have gone through yourself, and this colours your response and feelings. However, this is a different person in a different time, and he'll be fine (you'll make sure!!))

[mariaf]

So sorry, Pat and Cheryl, to hear your daughters' curves progressed so rapidly in such a short time. I think it's what we all fear - and my heart goes out to you both. I echo Gerbo's sentiments that it seems incredible, but we all know that possibility exists. Did this happen during puberty? I ask because I've always been told that is the "danger" zone.

Good luck to you

[cherylplinder]

Rachel has juvenile. It happened when she was 9, from 9 to 10.

[Celia]

The point that I wanted to make is that at Shriners in Philadelphia anyway, they are VERY conservative when choosing the patients for stapling. I just wanted to clear that up

Maria,

I read the 2003 study and one patient presented with an 18 degree curve and was operated on - there were also quite a few patients with 20 - 24 degree curves. It's not that I'm not a fan of vertebral stapling because I can see how it could a viable alternative to spinal fusion - if it works ?! Maybe the criteria for candidates has changed but who is to say that some over zealous surgeon out there isn't going to perform surgery on other children with very low curves ?!!! Vertebral stapling is still *very* experimental with *no* guarantees of avoiding spinal fusion later on and who knows what kind of pain issues these children will face later in life.

[mariaf]

Celia -

I can assure you that, at least in the case of Shriners Hospital of Philadelpiha, where my son has been treated for nearly three years, they are anything but overzealous - in fact, I've seen quite the opposite. I don't know if the 2003 study you mention refers to Shriners - or what the exact circumstances were - because I haven't seen it. Perhaps, as you say, the criteria has changed but I am certain that today, at least at this facility, they do not routinely staple curves of that size - and I totally agree with you that they shouldn't.

I understand that any surgeon, in any field, could be overzealous and that is never a good thing.

That being said, I have complete faith in Dr. Betz and his team. He has devoted the past few decades to improving the quality of life for thousands of kids - not just with scoliosis but with all sorts of conditions and he's highly regarded by his peers. I also think the fact that many other doctors, who were skeptical earlier, are now at least considering this alternative says something - since the medical community is often hesitant to embrace a new procedure unless and until they are convinced it can be a viable option. Yes, the stapling has only been around for 5 or 6 years but one of the only negatives I hear so far is that there is "no guarantee". But what comes with a guarantee? Surely not bracing - but we accept that as a form of treatment.

I guess in the end it's just a personal choice which form of treatment to choose. I would truly love to see them all work for David, Deirdre and all the other brave and wonderful children!!

[christine2]

Celia

The clinic is closed Mondays. I guess they felt bad that they had to rescedule my last Appt. with little notice. We leave Saturday and are going to go to the Safari Parc Zoo 1 day to break up the trip.

Christine

[pat]

Did she have an enormous growthspurt in those four months, any anatomical problems to take into account. Were the first xrays reliably measured? How old was she at the time?? Or is this kind of progression quite common?? (ignore my ignorance...)

Hi Gerbo, believe it or not, she only grew 3/4 of an inch from the 10/18 to four months later 33/45. She was 11. The more I see and hear w/scoliosis and treatment there is no rhyme or reason to it (I run a fairly large support group at our hospital); it can be the most frustrating unpredictable disease going! Maria, she hadn't started her period yet, she started it two years after the initial May 10/18 reading. pat

[mariaf]

I agree, Pat, unfortunately scoliosis IS a very frustrating, unpredictable condition!

[Celia]

I found the following article on MRI's and specifically juvenile scoliosis however, it mentions that *symptoms* are not often found prior to doing the MRI. The article is by Dr. Evans et al. I guess I should also post this in the juvenile section


http://www.jbjs.org.uk/cgi/reprint/78-B/2/314

[gerbo]

celia

wishing you all the best for your first class trip and review tomorrow

(better leave early in case heavy snowfall blocks the track....)