confused!

[jrnyc]

Karen
i was NOT suggesting anyone delay anything...
i was mentioning that i have read posts on forum about less satisfaction post surgery by patients who had less pain pre surgery..

i would NEVER suggest anyone wait on any decision they have made in an informed way...with their medical team...never!

i was trying to point out past experiences reported here on forum.

and that is all...period.

jess

[Pooka1]

Which is what surgeons recommend in your country?
In Argentina, all Latin America and Spain, all surgeons recommend surgery for ANY curve >= 50°.

That's for kids with growth left.

It clearly doesn't apply to adults because there have been at least 3 cases of adults with a 50* or better curve who had NO measurable progression over many years, in one case about 3 decades.

I doubt you would find a surgeon anywhere telling an adult with a curve of 50* with no pain or proven progression they should have surgery. That said, adults with larger curves might be recommended surgery because of the internal organ damage even without pain or progression.

[flerc]

That's for kids with growth left.

It clearly doesn't apply to adults because there have been at least 3 cases of adults with a 50* or better curve who had NO measurable progression over many years, in one case about 3 decades.

I doubt you would find a surgeon anywhere telling an adult with a curve of 50* with no pain or proven progression they should have surgery. That said, adults with larger curves might be recommended surgery because of the internal organ damage even without pain or progression.

I think is a very more reasonable criteria. Surgeons as I know in this part of the world may recommend very strongly, strongly or not strongly, but ever recommend surgery.
It would be great for me to know about that cases.

[hdugger]

i was mentioning that i have read posts on forum about less satisfaction post surgery by patients who had less pain pre surgery..

Yes, I think that's it exactly. It's not that people without pain before surgery and more likely to get it afterwards, it's that *if* they end up with pain afterwards, they're much unhappier about it because they'd felt fine before the surgery. People who were in pain before are more accepting of pain afterwards.

[hdugger]

I think is a very more reasonable criteria. Surgeons as I know in this part of the world may recommend very strongly, strongly or not strongly, but ever recommend surgery.
It would be great for me to know about that cases.

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.

[Pooka1]

I think is a very more reasonable criteria. Surgeons as I know in this part of the world may recommend very strongly, strongly or not strongly, but ever recommend surgery.
It would be great for me to know about that cases.

Flerc, if your daughter is done growing, even though her curve is above the surgical threshold, if she has no pain or demonstrated progression, I don't think a surgeon will recommend fusion. But I'm not a surgeon.

Everything for your daughter will depend on:

1. growth remaining
2. any pain
3. any demonstrated progression.

If there were at least three adults here with large curves that were stable for years then I think we can't assume all large curves progress. That said, at least one of those people had fusion for bad pain in spite of no progression.

[flerc]

Sharon, all surgeons I have seen although, they think that her curve did not grow since 2 years ago, and is really very difficult she can grow any more with now 17 years old and Riser >=4 and menarche at 12 and she is not in pain, all of them recommend surgery. Much of them recommend it very much strongly, even they agree that there are not organ complications. Surely they are sure that is impossible that a big curve could remains stable, they never heard about those cases.

[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.

I think that something like that occurs here with curves >= 40° and < 50°

[flerc]

Sharon, may you tell me more about those cases? Which was the age when stability began?
Some surgeons said me that after 20 years old (they not said me why 20 instead of 21, 23 or 19) the curve begins to grow and pain arise and only stop with surgery.
I think they say 20, because I have heard that rotation cannot be corrected with surgery in the same way after that age. Maybe because consolidation of vertebras would occurs at that time..

[Pooka1]

Sharon, may you tell me more about those cases? Which was the age when stability began?

Well I only remember the details of one case. Her curve stabilized at ~50* as an adolescent or a teenager, perhaps even before growth was complete. She had fusion at ~40 years old strictly for pain. There was no progression after she hit 50* for ~30 years.

Some surgeons said me that after 20 years old (they not said me why 20 instead of 21, 23 or 19) the curve begins to grow and pain arise and only stop with surgery.

They can and maybe usually progress in adulthood if they are >50* but there are clearly some cases that do not progress even at 50*.

I think they say 20, because I have heard that rotation cannot be corrected with surgery in the same way after that age. Maybe because consolidation of vertebras would occurs at that time..

No idea about that.

[flerc]

Well I only remember the details of one case. Her curve stabilized at ~50* as an adolescent or a teenager, perhaps even before growth was complete. She had fusion at ~40 years old strictly for pain. There was no progression after she hit 50* for ~30 years.

It’s really very interesting!!. But if I tell them about this case, sure they will say that this could happened because it was exactly in the limit. Please let me know if you remember something about the other cases.

Thanks!!

[Pooka1]

Flerc,

I don't remember the other cases. I just remember commenting each time that they were yet another case of a large curve remaining stable for many years. I am taking these people at their word as I don't think they are lying or mistaken.

No surgeon is going to tell you this can't happen. They must know it happens but it may not happen enough to tell you that you can hope for this.

As I recall, your daughter has a thoraco-lumbar curve, si?

There is a paper showing that these TL curves generally fall into one of two groups... ones that have a slow progression and ones that have a faster progression. Your daughter sounds like she might be in the slow progression group. Does someone know the paper I am talking about? The lead author was a heavy-hitter as I recall like Winter or Weinstein or someone like that.

[Karen Ocker]

[QUOTE=hdugger;117708]Yes, I would have. Because cancer, like scoliosis, is multifaceted. One probably *should* delay with certain kinds of cancer, where watching and waiting often leads to a better outcome then rushing into surgical or chemo treatment. Without a specific diagnosis and the medical knowledge to make sense of it, you simply cannot make a treatment recommendation in either case.

My husband(prostate), brother (invasive prostate), sister-in-law, bilateral breast and myself bilateral breast are all cancer survivors.

[hdugger]

My husband(prostate), brother (invasive prostate), sister-in-law, bilateral breast and myself bilateral breast are all cancer survivors.

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.

[flerc]

Yes Sharon, her curve is thoraco-lumbar I only know that increased 3º, from age 14 to 15 and then seems to stopped. I have not idea how was before. It would be great to read that paper..
It would also very important for me to know if surgeons in your country need to know something else than degrees for indicate surgery if curve is over 50º. Here is exactly the same 51º or 151º. Urgency is the only difference.