confused!

[hdugger]

Sorry, Karen. I engaged the idea and not the substance. I'm blaming it all on the fact that I was boarding a ferry while I was writing

Best of luck in the cancer front. I've seen 4 family members pull through - my nephew quiet miraculously and completely (all due to good docs at UCSF). And they weren't even giving him 50/50 odds.

[Karen Ocker]

I stand corrected

My mother, sister, brother, and nephew are all survivors, and my father died of cancer. Only one of them, my nephew, really benefited from treatment. Two of them would have been OK without it, one of them it's unclear what the treatment did, and for my father, it just prolonged his sickness. But my nephew was a resounding success

So, it just depends. Again, I understand the impulse to help, but definitive treatment recommendations are best left to the experts. None of us on the forum, myself included, are qualified to recommend treatments with such certainty that we suggest a psychological weakness in those who disagree with the recommended treatment. That's really all I'm saying.

I guess I get on my soap box too often.
I hated my large deformity as a teen -- curve larger than 60 deg. One neighbor actually told my mom: "Looking at Karen gives me the creeps."

[flerc]

Surgery is available to any adult with a curve over 50 degrees, because that's when insurance starts covering it. But surgeons don't mostly advocate for surgery unless there's progression, pain, or compromised internal organs. They just tell you that you *can* have surgery if you want it.

Hudger, are you sure that is possible that some surgeons in USA not indicates surgery if there is not pain, progression or compromised internal organs even if the curve is >50? Do you know what recommends to do in that case? All surgeons have the same criteria or only a few of them? In the Spanish-speaking world, they not need to know nothing else, surgery is the only one option for them. Do you know if exist a value from which the criteria would be the same that here with 50°?

[Pooka1]

I am not a surgeon but I have seen some indication of what appears to be a concern for saving lumbar levels. This would be a concern for T and TL curves.

That is, if you fuse earlier, you might be able to stay above about L3 and then you might only ever need the one surgery.

Speaking for myself as a hypothetical patient with a TL curve, I would ask early and often about fusing as early as possible if it was likely to save lumbar levels and therefore increase the chance of only have the one surgery.

Just my bunny approach.

ETA: There was a case discussed on this forum about a surgeon who wanted to fuse a TL curve in a kid at ~40* not 50* for the expressed reasaon to try to save lumbar levels. That caught my attention. If you can avoid the countdown by fusing earlier then that sounds right to me. I sometimes think if my girls were fused much earlier they would have less than 10 levels fused. Each. That's 20 levels in our house. Maybe it could have been 10 total. Who knows.

[hdugger]

I hated my large deformity as a teen -- curve larger than 60 deg. One neighbor actually told my mom: "Looking at Karen gives me the creeps."

That's just heartbreaking. I do wish the surgery were an easier road. Having teens navigate their way through the already treacherous roads of adolescence with an obvious physical difference . . . it's just amazing that any of them make it through.

BTW, I didn't mean to downplay the effect of scoliosis on lung capacity. I think that's an important discussion, and one that surgeons seem to be avoiding by and large. My son's first doctor (not a scoliosis specialist) told him that his curve could get to 90 degrees without causing any problem to his internal organs - I'm almost certain, from all the stories that I've read here, that his curve will affect his lungs long before that. And that doesn't take into account the effect of hypo/hyperkyphosis, which may have an even larger contribution.

For my son, we're just trying to get him through college without having to think about medical stuff. After that - I don't know. Even without pain and progression, the psychological aspects of scoliosis get to him. If I knew that he wouldn't end up with the neck problems I so often see in people fused high with kyphotic curves, I'd almost feel like he should get surgery once he graduates. But the neck stuff is really a crap shoot and makes the decision much harder - there's a reasonable chance he could go from being healthy and pain free with a (largely) unnoticeable curve, to possibly having chronic pain, a more obvious forward curve in his neck, and needing neck surgery.

But, I am listening to the caution about pulmonary function, and I will request that his surgeon set him up for a lung function test so we can start tracking that.

[hdugger]

Hudger, are you sure that is possible that some surgeons in USA not indicates surgery if there is not pain, progression or compromised internal organs even if the curve is >50? Do you know what recommends to do in that case? All surgeons have the same criteria or only a few of them? In the Spanish-speaking world, they not need to know nothing else, surgery is the only one option for them. Do you know if exist a value from which the criteria would be the same that here with 50°?

I think all surgeons will do surgery if you're over 50 degrees, they just won't usually press for it. Our surgeon, for example, told my son that he could have surgery, or, since he wasn't progressing, he could not visit again for five years. It was presented as more a personal decision then a medical one.

Surgeons start to press if they see a rapid progression. That's the thing that really sets off all the alarms. Beyond that, I think they do frequent check-ins with people with large curves, but they tend to feel that there's a big window in which to do the surgery.

[flerc]

I am not a surgeon but I have seen some indication of what appears to be a concern for saving lumbar levels. This would be a concern for T and TL curves.

That is, if you fuse earlier, you might be able to stay above about L3 and then you might only ever need the one surgery.

Speaking for myself as a hypothetical patient with a TL curve, I would ask early and often about fusing as early as possible if it was likely to save lumbar levels and therefore increase the chance of only have the one surgery.

Just my bunny approach.

ETA: There was a case discussed on this forum about a surgeon who wanted to fuse a TL curve in a kid at ~40* not 50* for the expressed reasaon to try to save lumbar levels. That caught my attention. If you can avoid the countdown by fusing earlier then that sounds right to me. I sometimes think if my girls were fused much earlier they would have less than 10 levels fused. Each. That's 20 levels in our house. Maybe it could have been 10 total. Who knows.

It’s interesting what you are saying.
I’m trying to know about different criterias around the world, because I think that all those kinds of categorical statements are statistically true. That is, in some percentage of cases, it would be best that we can do, but not in other cases.
So is really very important determine that percentage. Regardless statistics done, if all the surgeons around the world (they should to be thousands) are absolutely sure about the unstoppable and great progression and complications of ALL curves > 50°, well.. I suppose this percentage should to be really important.
I think that not all surgeons are sure of that because I remember that someone here said that her surgeons told her something like he would not recommend surgery even if her curve, close to 50°, would be some degrees greater.
But this surgeon could be the only one exception in USA, I don't know.. somebody knows?.

[flerc]

I think all surgeons will do surgery if you're over 50 degrees

I understand you are saying that all surgeons, regardless age, progression, pain, complications.. all of them are sure that surgery should to be done in ALL curves > 50°.

I remember I have read in some post that the criteria was something similar about what you said in this thread, that is >50° AND (pain or progression or..) but it seems to be exactly the same that in this part of the world, that is, > 50° is a SUFFICIENT condition. The only difference would be about urgency and other issues. Well, it seems I should to think that the surgeon that someone commented time ago, may be the only one exception in the world.

[Ballet Mom]

There is no requirement to get scoliosis surgery...ever. It is totally the patient's decision, as it should be. Look at Elizabeth Taylor. Yes, most scoliosis surgeries are successful, but for a small percentage the results can be devastating and people can choose to not take that risk for themselves. It is their decision.


Here's an interesting study regarding pulmonary function in scoliosis patients who have had posterior surgery or bracing. Thank goodness for the Swedes and their studies! Obviously, this study doesn't reflect anterior surgeries that are known to decrease pulmonary function.


CONCLUSIONS Patients treated by posterior fusion or a brace gradually increase their pulmonary function up to 25 years after treatment. Smoking and curve size are not risk factors for reduced pulmonary function.
/
/

Pulmonary function in adolescent idiopathic scoliosis: a 25 year follow up after surgery or start of brace treatment
K Pehrsson, A Danielsson, A Nachemson
+ Author Affiliations

Departments of Orthopaedics and Pulmonary Medicine, Sahlgrenska University Hospital, Göteborg University, SE-413 45 Göteborg and Department of Respiratory Medicine, Malmö University Hospital, SE 205 02 Malmö, Sweden

Abstract
BACKGROUND Pulmonary function in patients with adolescent idiopathic scoliosis many years after posterior spinal surgery or brace treatment has not been documented.

METHODS A consecutive group of patients treated by posterior fusion or a brace at least 20 years previously was investigated. 90% attended a clinical follow up. Lung volumes were determined before treatment in 251 patients, 1.4 years after surgery in 141 patients, and 25 years after surgery or start of brace treatment in 110 patients. Vital capacity (VC) was calculated as percentage predicted according to height and age and the results were corrected for loss of height due to scoliosis. Scoliosis angles were measured and smoking habits were recorded. An age and sex matched control group was also examined with the same questionnaire and pulmonary function tests.

RESULTS VC increased from 67% predicted immediately before surgery to 73% (p<0.001) after surgery and to 84% (p<0.001) at the present follow up, mean change 10.8% (95% CI 9.5 to 12.1). In the brace treated patients VC increased from 77% predicted before treatment to 89% (p<0.001) 25 years after start of treatment, mean change 12.3% (95% CI 10.5 to 14.1). The mean Cobb angle at the present follow up study was 40° in both surgically and brace treated patients. The present results of lung volumes did not correlate with pretreatment or post-treatment Cobb angles or smoking habits.

http://thorax.bmj.com/content/56/5/388.abstract

[Ballet Mom]

I understand you are saying that all surgeons, regardless age, progression, pain, complications.. all of them are sure that surgery should to be done in ALL curves > 50°.

I remember I have read in some post that the criteria was something similar about what you said in this thread, that is >50° AND (pain or progression or..) but it seems to be exactly the same that in this part of the world, that is, > 50° is a SUFFICIENT condition. The only difference would be about urgency and other issues. Well, it seems I should to think that the surgeon that someone commented time ago, may be the only one exception in the world.

I don't think there are any actual set-in-stone-requirements, just guidelines that vary by hospital and doctor but are generally very close. I think it really depends on whether your insurance company will pay for it or not. If you can pay cash, you can probably do whatever you want.

"In adults, the curve may progress slowly over the years, bracing is not a practical solution to prevent curves from increasing. Mild curves under 30 degrees do not usually progress; severe curves over 60 degrees usually progress and scoliosis between 30 and 60 degrees may or may not progress." http://www.scoliosisrx.com/


I have read about doctors who fuse kids at 40 degrees, doctors who fuse due to unacceptable disfigurement at a low cobb angle, one doctor who fused someone at 33.5 degrees for pain! It is really variable depending on the specific case. I suspect most doctors would not want to subject a person to surgery unless they felt there was some reason it was medically necessary.

[mgs]

I hated my large deformity as a teen -- curve larger than 60 deg. One neighbor actually told my mom: "Looking at Karen gives me the creeps."

Gasp! If any neighbor - or anyone - had said that to my mother about me, my father would have been at the police station, with bail money.

[rohrer01]

Flerc,
My current doctor said 60* for surgery. Every doctor I have been to has said something different. As a teen it was 40*, then later another doctor told me 50*. My curve held in the upper 30's for at least 20+ years. Then in my late 30's/early 40's it started progressing, and quite rapidly for a "stable" curve. I attribute that to chiropractic treatments, but who can say for sure?

[flerc]

Ballet Moon, very interesting.. I did not know about Elizabeth Taylor scoliosis..
Of course is the patient's decision as you said, even if the curve is >150°, but some decisions seems to be more reasonable than others. But anyway, always is the patient's decision. In the Spanish-speaking world, I think that in a very much high percentage, the patient's decision is to do what surgeons recommend doing. It seems a reasonable criteria, but with probably high risk in the border cases. Although it’s not exactly my own criteria, I give a great importance to what seems to be the most reasonable and I think that what surgeons thinks, is important to estimate that reasonability
Personally I think that is not reasonable to think that >50° is a sufficient condition for be sure that surgery must to be done, but if all surgeons think that.. is reasonable to think that maybe a reasonable statement. How much reasonable?.. sure more reasonable than if some surgeons and not only one in the world don’t agree.

[hdugger]

I believe the thinking is that a 50 degree curve in an adult is likely to keep progressing, so why not do surgery while the patient is younger and healthier and the curve is smaller.

I suspect, based on something Linda said once about there being a large number of patients who are 18 and 19, that there's a big group of people who do just that. Their curves progressed into surgical range as adolescents, but not so fast that they were forced into surgery as teens, and then they get surgery while they're still young even though they're not in pain or progressing.

[flerc]

Flerc,
My current doctor said 60* for surgery. Every doctor I have been to has said something different. As a teen it was 40*, then later another doctor told me 50*. My curve held in the upper 30's for at least 20+ years. Then in my late 30's/early 40's it started progressing, and quite rapidly for a "stable" curve. I attribute that to chiropractic treatments, but who can say for sure?

Rohero1, supposing that your doctor is another different, now there are 3 surgeons that not believe in the 50º sufficient condition statement. I suppose that Ronald Blackman cannot believe that, if he think that curves < 60º may stop progressing.
The reasonableness of that statement, is decreasing very much for me now because I think it should to be more surgeons not believing in it.
Of course there are so many surgeons believing in that statement and even in one more restrictive. I have heard about a surgeon in Spain who always indicates surgery in curves >30º.

You should not to think what could have happened, you must to know what is now happening. I have some hypothesis about what could triggered the scoliosis of my daughter and in much of them I would be guilty, but we cannot be sure of anything and this kind of thoughts about the past not lead to any solution..only if it could alert about what we should not to do again. Did you try to turn your spine more flexible?. I don’t know if SGA, Rpg or other Mezierist method exists in your country but surely Rolfing, Ostheophaty, Qui Gong iYengar Yoga or Myofascial release. I think you should to try. The current surgeon explained to me why rigidity could lead to pain in a big curve. Anyway it should to be good before surgery.