confused!

[livingtwisted]

flerc, your inbox is full. PM me your email or let me know when there is space

[Karen Ocker]

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]

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]

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]

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]

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]

Denial

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]

Post op lung capacity

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]

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]

I know this is blunt but knowledge is power.

Precisely.

[Karen Ocker]

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]

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]

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]

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]

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°.