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muzzy80
02-27-2011, 03:42 PM
Hello!

I have been reading all the information about non surgical methods but I am still confused and would love for people to give me a straight answer!
I have a 70 degree thoracic curve and 60 lumbar. I went to the Schroth clinics in the UK for one of their courses. I think it has improved my posture and it is suppose to stop progression but having spoken to surgeons they say that whatever I do it will not ever stop my curve progressing. Is this true? Will I never be able to avoid surgery? Help, I need help....!
Thanks in advance

TitaniumGrrrl
02-27-2011, 03:48 PM
As a post surgical patient myself, perhaps you will write off my advice. However, my understanding of genetics & anatomy (as well as my personal experience) lead me to believe that nothing can stop a curvature from progeressing if your body is programmed, so to speak, for a more severe curve. I put off my own surgery for as long as I could, choosing to pursue other, nonsurgical options (mostly therapy to strengthen muscles). My doctor supported this, but I eventually reached the point where nothing was stopping or even slowing the progression of my cuves, & I was experiencing decreased lung function on one side as a result. In my experience, surgery is sometimes unavoidable.

Don't rule out surgery as an option, & if it makes you feel better, get second or even third opinions. But chances are there may come a point where surgery is your only option to every improve your spine.

muzzy80
02-27-2011, 04:15 PM
Thank you for the information. I have consulted with two surgeons who both told me to have surgery. It is such a hard decision to make especially since I am not in any significant pain. On one hand I want to wait and see if it progresses but on the other I know that it would be easier to have the surgery at a younger age ( I am 30 now). So tough.

livingtwisted
02-27-2011, 08:06 PM
I am also 30 yo and have a T curve in the 60s. My ortho has told me that it is very likely that I will need surgery in my lifetime -- basically since our curves are beyond a certain degree, gravity will just continue to weigh on it and cause progression. But because it is such a risky and invasive surgery, my ortho also says there is no reason to rush into it if I'm not in pain (my pain is minimal and manageable). He wants to wait until the benefits outweigh the risks (i.e., I'm in enough pain that its worth the recovery and chance that I'll still be in pain after). So for now I'm doing everything I can to stay healthy and strong and prevent progression. I think there are some cases of even larger curves with no pain, so who knows maybe I'll be able to avoid it forever.

Sorry, I know this might just make the decision harder because your doc is telling you something different, but I wanted to give you another perspective. I guess things are trickier when the lumbar is involved so maybe that's why he is recommending surgery now. Good luck!

TitaniumGrrrl
02-27-2011, 09:52 PM
I am also 30 yo and have a T curve in the 60s. My ortho has told me that it is very likely that I will need surgery in my lifetime -- basically since our curves are beyond a certain degree, gravity will just continue to weigh on it and cause progression. But because it is such a risky and invasive surgery, my ortho also says there is no reason to rush into it if I'm not in pain (my pain is minimal and manageable). He wants to wait until the benefits outweigh the risks (i.e., I'm in enough pain that its worth the recovery and chance that I'll still be in pain after). So for now I'm doing everything I can to stay healthy and strong and prevent progression. I think there are some cases of even larger curves with no pain, so who knows maybe I'll be able to avoid it forever.

Sorry, I know this might just make the decision harder because your doc is telling you something different, but I wanted to give you another perspective. I guess things are trickier when the lumbar is involved so maybe that's why he is recommending surgery now. Good luck!

I was one of those cases with no pain. Well, not *no* pain, but very little. I primarily had pain from sitting in hard-backed chairs (school was killer) or vehicles with very stiff seats, but not much pain just from, say, living & breathing. However, I had a 75 degree thoracic curve & a 47 degree lumbar curve with a 29 degree rotation (my spine looked like DNA helix), & even for as bad as all that was, I had very little pain. So little, in fact, that I was very surprised when my thoracic curve progressed from 57 degree to 75 degrees in a span of only 3 months! So while pain is a good indicator of a problem, it is not the only indicator.

hdugger
02-28-2011, 12:24 AM
I think this is the difference between teen and adult patients. Exercise for teen patients in their growth spurt hasn't been shown to be effective. Even the practioners who recommend exercise don't recommend it for teens during a growth spurt. Braces are the only treatment recommended to hold a curve during those spurts.

But exercise can be effective for adults, both in halting progression and occasionally in reducing curves. How long it can hold or reduce it for is unknown - we're really in the early stages of getting good research done - but there are some promising reports for at least a short-term halt to progression.

flerc
02-28-2011, 10:12 AM
Do you have a flexible spine?, saying in other words, degrees are significant lesser when you are lying down that when you are stand? Have not your vertebras a serious deformity? If that is your case, I think you have good chances. You can know it with a Rx lying down and a MR but you can have an idea measuring lying down and stand and looking your vertebras in the Rx.
Even if your spine is not flexible, you can improve it with exercises taking into account muscular chains.
If some degrees can be reduced, it would be possible to stop progression. http://ezinearticles.com/?Scoliosis-Braces-for-Children-and-Adults---What-Are-the-Options?&id=5832070
I think it is like an arm wrestling between gravity force and what we can do.

rohrer01
02-28-2011, 12:09 PM
muzzy80,

Unfortunately, I don't think anyone can give you a straight answer. With the size of your curves, I would suspect that most surgeons you see would recommend surgery. Every spine is different and if there were a tried and true non-surgical method, we would ALL be doing it. You need to take into consideration factors that affect your own life, health and well-being. If your curves are progressing, then you have to consider things like restrictive lung disease and stress on your heart. Your age is also a factor. Younger people heal faster than older folks. My best advice would be to talk to your health care professionals and develop a plan that works best for you as an individual. You are the only one that has to live with your decision whether or not to have the surgery. Sorry I couldn't be more help. Best wishes to you whatever you decide.

flerc
02-28-2011, 12:23 PM
muzzy80,

if there were a tried and true non-surgical method, we would ALL be doing it.

Maybe that, like ANY OTHER KIND OF SOLUTION sometimes works and sometimes not.

rohrer01
02-28-2011, 12:39 PM
flerc,
You are absolutely right. However, no one can give her an absolute solution as she is asking for. This is why I recommended she get together with her healthcare providers and come up with a plan that best suits her. Every spine is different, as I mentioned. If muzzy80 can find a nonsurgical method that will help her maintain her curves and her level of comfort I'm all for it. I think if one decides for surgery, they need to be mentally prepared for it, and it sounds as if muzzy80 is not ready for that leap at this time. I would never try to sway someone into surgery or out of surgery. It's a personal decision that only the one undertaking has to live with. We can give out all the advice we want with the best of intentions, but we aren't the ones living with the consequences.

jrnyc
02-28-2011, 12:53 PM
hi muzzy
i believe a few people on forum have mentioned that patients without much pain do not have as good results with surgical outcomes as those with intense pain...
i do not want to quote anyone specifically, as i might get names wrong...but if you do an advanced search (on the top of this page) you might find some posts on the subject...

jess

flerc
02-28-2011, 01:06 PM
roher01 I agree 100% with you. I think she need information for do the best decision and we can help her in that sense. It’s good to know about different points of view, but of course as you said, it's a personal decision, regardless what anyone, even proffessionals, can advice.

livingtwisted
02-28-2011, 02:35 PM
I was one of those cases with no pain. Well, not *no* pain, but very little. I primarily had pain from sitting in hard-backed chairs (school was killer) or vehicles with very stiff seats, but not much pain just from, say, living & breathing. However, I had a 75 degree thoracic curve & a 47 degree lumbar curve with a 29 degree rotation (my spine looked like DNA helix), & even for as bad as all that was, I had very little pain. So little, in fact, that I was very surprised when my thoracic curve progressed from 57 degree to 75 degrees in a span of only 3 months! So while pain is a good indicator of a problem, it is not the only indicator.

Wow, that's quick! Sorry that happened to you, but it does just show that every case is very different. But, yes, I didn't mention that progression is another indication, along with pain. Were you in pain when it reached 75? At what age did the rapid progression happen?

hdugger
02-28-2011, 02:45 PM
i believe a few people on forum have mentioned that patients without much pain do not have as good results with surgical outcomes as those with intense pain...
i do not want to quote anyone specifically, as i might get names wrong...but if you do an advanced search (on the top of this page) you might find some posts on the subject...


That's been my sense, as well. Surgery is really the only treatment if you're progressing rapidly or have pain that can't be treated using any other method (or if your curve is compromising your internal organs). And people with these problems really feel the benefits of surgery. But, if you're not progressing and not in pain, then the pain and problems that sometimes crop up after surgery can be too great a risk. You don't want to go into surgery feeling pretty good and come out feeling bad.

Balancing all that is the fact that the earlier you have surgery the better you do.

livingtwisted
02-28-2011, 03:07 PM
Balancing all that is the fact that the earlier you have surgery the better you do.

True. But to make the decision even more fun... advancements in technique, instrumentation, etc are still being made and I expect will continue for some time. The methods that would be used on me today are very different than when I first became a surgical candidate.

livingtwisted
02-28-2011, 09:22 PM
flerc, your inbox is full. PM me your email or let me know when there is space :)

Karen Ocker
03-01-2011, 12:17 PM
hi muzzy
i believe a few people on forum have mentioned that patients without much pain do not have as good results with surgical outcomes as those with intense pain...
i do not want to quote anyone specifically, as i might get names wrong...but if you do an advanced search (on the top of this page) you might find some posts on the subject...

jess

Jess,
I do no know where that comes from. I didn't have much pain but I permanently lost lung tissue. I had excellent results from my surgery and am totally pain free now at age 68 1/2 - 8 years post op. My philosophy, after going through my experience: painless progressing spinal deformity can be a very good reason for surgery. Nothing stopped my progression--even a very strong core and abdominal muscles. The heart will rotate along with the spine if the curves are large enough and losing lung tissue is totally painless but results in a permanent loss of lung capacity.

This is also scientifically based not just my "philosophy".

Waiting for large curves to start hurting is totally nuts. Painless curve progression can feed into the denial that surgery is necessary.

livingtwisted
03-01-2011, 12:59 PM
Karen,

Great to hear you are doing so well. And obviously curves that are affecting the organs is another indication for surgery. I'm curious -- have you had your lung capacity tested post op?

Pooka1
03-01-2011, 01:00 PM
Maybe Jess is right but my impression from the testimonials is exactly opposite about pain patterns pre-and post-op.

Results are scattered and there are a few folks in worse pain post-op but the majotrity seem to be in less pain.

A problem I have seen is the folks who are in lots of pain pre-op and on lots of meds have trouble controlling the recovery pain more perhaps but I think they generally have less pain eventually post-op. Maybe Linda can edify me on that if wrong.

I guess the fusion would still be ncessary for large curves as it relates to crushing internal organs but I certainly never got the impression that most people who do this for progression+pain are worse off after the surgery pain-wise. That is, I don't think people are trading stopping progression for increased pain in any great numbers. Of course it does happen and there are no guarantees but it certainly doesn't seem to be the norm.

hdugger
03-01-2011, 04:35 PM
I'm going to call out the word "denial" again as an overly-charged word, and one which suggests the passer-bys on discussion forums have some medical or psychological insight into each other's cases.

Whether and when to have surgery is a decision entirely made between patient, loved ones, and doctors. Noone outside that circle has the medical knowledge and/or emotional investment to judge the soundness of that decision.

Pooka1
03-01-2011, 04:46 PM
The consensus of the medical community is either present or not in a given "class" of cases let's say.

Karen's point, as I understood it, concerned the consensus of the medical community on the damage done with large curves. There either is never, sometimes, usually, or always damage to internal organs associated with curves of a given range.

If it is usual or always then one is denying facts about the reality of organ damage, not making armchair psych diagnoses.

It is identical to saying folks are in denial over any set of facts. They either are or are not. You don't need a psych degree if you know the fact case.

Pooka1
03-01-2011, 04:48 PM
Here's an example.

The earth is ~4.55 billion years old.

You don't need to be a psychologist/psychiatrist to say someone who rejects this fact is in denial. You just have to know the fact case.

Karen Ocker
03-01-2011, 05:42 PM
Karen,

Great to hear you are doing so well. And obviously curves that are affecting the organs is another indication for surgery. I'm curious -- have you had your lung capacity tested post op?

Yes, and I did not regain it. As a matter of fact, because my curves were so large pre-op the only way to reduce them was to go through my chest. Another reason not to let them get too large--pain or not. At the pre-op visit with the pulmonologist he told me my capacity may not improve or even get a little worse. I asked why. He said, because the respiratory muscles/nerves to access the spine anteriorly, are cut, respiratory capacity/ability can be reduced. This happened to me. I have ~50% normal. Pre-op I had ~65% normal.

There should be no kidding oneself about functioning normally with large progressive curves and then thinking "I can always have surgery or 'hold' the curves some non-surgical way." This not based on fact or science and just feeds into fear and denial.

The smaller the curves, providing they are in the operative range, the less invasive the surgery is. Waiting too long can mean the anterior approach might be the only way to correct or stabilize a curve permanently.

I know this is blunt but knowledge is power.

hdugger
03-01-2011, 05:49 PM
Again, I'll stress that this is the conversation one ought to have with one's doctor and family. Noone outside that circle can offer any particular enlightenment on any specific decision. There are countless pieces of information that go into a specific decision, and only that small circle is qualified to sort them out.

Pooka1
03-01-2011, 05:51 PM
I know this is blunt but knowledge is power.

Precisely.

Karen Ocker
03-01-2011, 07:28 PM
Again, I'll stress that this is the conversation one ought to have with one's doctor and family. Noone outside that circle can offer any particular enlightenment on any specific decision. There are countless pieces of information that go into a specific decision, and only that small circle is qualified to sort them out.

Of course.
But doctors often do not sit down and explain all the implications because they do not have the time. When they do explain we do not want to hear it. Or we delay in even seeking out treatment from fear. Been there, done that. I also got bad advice from one soon-to-be-retiring scoliosis specialist. He told me I wouldn't get worse at age 52--with a 62 deg curve. By 59 I was 80 deg.

If I were to say: "delay in treating cancer can result in a worse outcome" would you have given such a sharp retort???

One of the best feedbacks I got on an earlier forum was "don't wait too long". This person did wait too long and she needed oxygen 24/7. This is when I was mulling over my decision. This was invaluable to me.

flerc
03-01-2011, 10:14 PM
Assumptions (I don’t know if all are facts):

_A big curve lead to complications like lung capacity
_Complications increase in a very fast way if and only if the curve increase in the same way.
_In adulthood, the curve cannot increase in a very fast way, for instance 10º in a day, a week, a month or 1 year?.
_Serious complications could need a fast solution.
_Surgery may be the faster an effective way to reduce a curve.
_ Outcomes of surgery would be more or least the same today or 1 year later, if the curve has not increased very much.

1º conclusion: If you have not yet serious complications, you have not urgency for surgery.

livingtwisted
03-02-2011, 12:31 AM
I can understand opting for surgery earlier than later or regretting not having gotten it earlier because the approach to the surgery may become more complicated/invasive with a larger curve assuming you are progressing, and I have even heard that in some extreme cases it becomes inoperative. But what I am still having trouble understanding is why decreased lung capacity is an indication for surgery if the lung capacity doesn't improve after surgery. Is the goal simply to stabilize the lung capacity, even if it is being stabilized at a worse state than pre-op?

Schroth seems to be more consistently effective at increasing lung capacity than correcting curves. If the main concern with larger curves is lung capacity, why would this not be considered before surgery?

hdugger
03-02-2011, 02:48 AM
If I were to say: "delay in treating cancer can result in a worse outcome" would you have given such a sharp retort???

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.

I'm specifically concerned that throwing around disempowering words like "denial" and coupling them with nebulous terms like "large curve" and "progressing" just creates a lot of confusion. Is it denial when someone with a 45 degree curve which is increasing by 1/2 a degree every year decides to delay surgery? Or is it only denial when their curve is 100 degrees and progressing a degree a month?

I understand the fear of people waiting too long, but there are also risks from having surgery too early. In one presentation we watched last year, the surgeons were talking about surgery starting and stopping the clock. One group was talking about how you had to do surgery early because it stopped the clock on progression, while the other group was saying, no, you didn't want to do it too soon because having surgery started the clock on the degenerative process in the lumbar spine So, do you do one surgery early to stop the progression, and another one later to take care of the degreneration? Or do you have one big surgery late? If the surgeons aren't clear on whether they're starting or stopping the clock, I'm pretty sure noone on this forum is any clearer.

There are some clear indications for adults having surgery, and we've talked about them throughout this discussion:

* The pain from your curve is severely limiting you day-to-day activities
* Your curve is progressing aggressively (I'm going to call this 5 degrees a year, but I'm just pulling a number out of my hat)
* Your curve is harming your internal organs

You'll mostly know if you're in one of those situations, because any surgeon you see will strongly recommend surgery. I'm guessing that they'll more strongly recommend it in the latter two cases, and leave it more up to what you can tolerate in the first case.

Outside of those three cases (and maybe just outside of the last two), it's really a judgement call. People will make individual decisions for personal reasons, and most of those decisions will turn out OK. A few people will delay surgery and wish they hadn't. And a few people will have surgery early and wish they hadn't. But, based on what I've seen in this forum, the majority will be happy with their decision, whether they rushed into surgery or held off for a long time.

flerc
03-02-2011, 10:56 AM
There are some clear indications for adults having surgery, and we've talked about them throughout this discussion:

* The pain from your curve is severely limiting you day-to-day activities
* Your curve is progressing aggressively (I'm going to call this 5 degrees a year, but I'm just pulling a number out of my hat)
* Your curve is harming your internal organs


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

jrnyc
03-02-2011, 11:24 AM
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
03-02-2011, 11:38 AM
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
03-02-2011, 11:50 AM
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
03-02-2011, 12:24 PM
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
03-02-2011, 12:26 PM
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
03-02-2011, 12:31 PM
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
03-02-2011, 12:56 PM
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
03-02-2011, 02:04 PM
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
03-02-2011, 02:14 PM
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
03-02-2011, 03:07 PM
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
03-02-2011, 03:34 PM
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
03-02-2011, 03:47 PM
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
03-02-2011, 04:45 PM
[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
03-02-2011, 08:33 PM
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
03-02-2011, 09:33 PM
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.

hdugger
03-03-2011, 02:46 AM
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
03-03-2011, 09:24 AM
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
03-03-2011, 10:14 AM
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
03-03-2011, 11:03 AM
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
03-03-2011, 11:31 AM
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
03-03-2011, 11:36 AM
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
03-03-2011, 12:28 PM
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
03-03-2011, 12:51 PM
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
03-03-2011, 02:09 PM
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
03-03-2011, 02:20 PM
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
03-03-2011, 03:29 PM
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
03-03-2011, 04:03 PM
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
03-03-2011, 04:18 PM
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
03-03-2011, 04:29 PM
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
03-03-2011, 11:05 PM
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.

flerc
03-03-2011, 11:29 PM
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.

Because progression could stop and if not, surgery techniques could improve at the moment that surgery will be needed, could be a reasonable answer.


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.

It's a very common criteria followed here. Surgeons always recommend surgery before 20'
It's a very much reasonable decision, if it is supposed the (almost) impossibility to stop progression.

Pooka1
03-04-2011, 06:55 AM
I have heard about a surgeon in Spain who always indicates surgery in curves >30º.

That's interesting. Are you sure?

If true, maybe this surgeon is exploring early fusion in patients with high scoliscores as a way to save many levels.

Outside of a definitive prove-out of scoliscore and that most/all high scores will become surgical, it appears impossible to test this hypothesis because most curves do not progress to become large curves.

Still I wonder if there is any data out there to show that fusing say a 25* curve results in less than half the levels fused compared to if that curve made it to 50* on average. All curves are different but I'm talking about in the limit. It may be that somehow, some day they find that fusing 2-3 levels on small curves stops progression in most curves. That would completely change everything, at least for kids whose curves are caught early.

flerc
03-04-2011, 08:27 AM
I really doubt that this surgeon takes scolioscores into account. I think that, as in USA 50 is the most accepted limit and 40 for few surgeons, maybe 40-45 is the most accepted limit in Spain and this surgeon is an extremist. But he may argue that he wants to avoid any possibility of progression, and I have heard about few cases progressing with so few degrees.

hdugger
03-04-2011, 10:24 AM
At 30 degrees, I think the risks of surgery outweigh the risk of pain or progression in adulthood. With no other symptoms, I'd be very, very hesitant to fuse a 30 degree curve.

AILEA
03-04-2011, 01:26 PM
Hi Flerc,
Who is that surgeon? As you may know, I’m Spanish and I’ve never heard about this.
In fact I think Spanish doctors are mostly conservatives regarding scoliosis.

flerc
03-04-2011, 02:04 PM
Hi Ailea, are not you a member of the Spanish forum? I just commented about this there http://escoliosis.org/escoforo/index.php?topic=1437.0
I'm not sure about who talked about this surgeon, but without given the name, but why do you think they are mostly conservatives? I’m not very sure if I know what it means, but all people in that forum agree that is impossible for surgeon to not believe that >50° is a Sufficient condition for surgery.