Definition of Revision Surgery

[Pooka1]

But what if the statistic is that 70% of people who have fusion need revision (which I heard on this forum)? That's certainly sobering and a good reason to think twice about having the surgery. Wouldn't you listen to the statistic in this case? Wouldn't you want to know about this?

Even if it was 90%, it is still probably lower than the problems with not having the initial surgery or else there would be no initial surgeries.

Fusion is about cutting your losses. But the backdrop is always loss. Parents who come on here debating surgery for their kids are comparing it against an imaginary reality of normal that is forever lost once the scoliosis is large. They can't let go of normal though they must.

[Tina_R]

Totally agree that it's a flawed treatment. I think we'll eventually find that most kids who have spinal fusion surgery, do not require revision surgery. This is something that's been hard to track, because most of these kids are treated by surgeons who specialize in pediatric orthopaedics. They see their patients for a few years and then do no follow-up.

https://www.ncbi.nlm.nih.gov/pubmed/31925756

Unfortunately, adults, especially "older" adults, don't fare as well. I've heard numbers as high as 70%. If you've been looking at abstracts, I'm sure you've seen that the numbers are all over the place. Like kids, it's difficult to perform survivorship analysis, as a large percentage of patients don't return to their original surgeon for revision.

--Linda

If we ever have Medicare For All I wonder if government will make some improvements such as forcing doctors to keep data and contribute to a database for each patient that would follow them wherever they go. This would be anonymous and voluntary and would contribute to a national database. This would enable us to better study the progress of diseases and the results of treatments in large numbers of diverse people. There is probably no motivation for there to be such a database now, it just adds to the cost of care. Studies are done and data collected only when someone wants them done, probably motivated by money.

Or maybe Medicare For All would result in a less good medical system if the motivation for profit is removed, who knows. That's a political question.

[Tina_R]

It's going to be a function of the prevalence of each type of curve combined with the likelihood of needing an extension or the likelihood of a complication necessitating another surgery.

As far as I know, the most prevalent AIS curve is a single T curve followed by a double major.

A single T curve can be a one-and-done surgery if it ends above about L1 and the lumbar is driven straight enough. If not then another surgery to fuse into the lumbar might be needed. Any fusion that goes much into the lumbar is likely to start a countdown to fusion of the lumbar.

In re double majors, it is my impression that surgeons simply cannot bring themselves to fuse most of a child's spine and so do not fully fuse the lumbar. It seems like many of these cases will require further fusion because it that wasn't the case then no surgeon would ever fuse into the lumbar in a double major curve.

There is adding on and proximal junctional kyphosis when the wrong levels are chosen for the end the fusion among other reasons. So those are categories of needing revision but I am not sure what the rate is that these occur.

Lumbar and triple curves are much less frequent as far as I know and I don't know anything about the revision rate of those.

It is probably better to investigate what exact type you have and search the literature in the out years after surgery.

Yes, I took probability and statistics. If you know the probabilities of all the components, you can compute the sum total probability. I'll bet no one knows the individual probabilities of these elements of scoliosis because I keep hearing that data isn't that well kept. Some of the elements are independent of each other and others are not, they are conditional. It gets complicated.

I wasn't looking for anything that complicated. Simply, if anyone with scoliosis has fusion surgery, what are the odds they will need more surgery someday? (Yes, it does make sense to compare people similar in age and severity.) The simple answer is, high. And the reason is that fusion itself causes more problems which they solve with more fusion.

There's no turning back once you have that first surgery. You have set yourself on a deterministic course for more surgery. So it would be nice to have known that before that first surgery.

[Pooka1]

Yes, I took probability and statistics. If you know the probabilities of all the components, you can compute the sum total probability. I'll bet no one knows the individual probabilities of these elements of scoliosis because I keep hearing that data isn't that well kept. Some of the elements are independent of each other and others are not, they are conditional. It gets complicated.

I wasn't looking for anything that complicated. Simply, if anyone with scoliosis has fusion surgery, what are the odds they will need more surgery someday? (Yes, it does make sense to compare people similar in age and severity.) The simple answer is, high. And the reason is that fusion itself causes more problems which they solve with more fusion.

There's no turning back once you have that first surgery. You have set yourself on a deterministic course for more surgery. So it would be nice to have known that before that first surgery.

I completely agree with all of this. I do not think pediatric surgeons are necessarily telling kids and their patients that more surgery is likely in their future. It is probably a minority of pediatric fusions that can be "one and done." I don't think it is completely honest.

I don't know about adult deformity surgeons. I do know several patients have come on here having been warned about needing a distal extension of their lumbar fusion. On the other hand we have at least one member here (Susie*Bee) who has a long fusion ending at L4 who seems like she may never need a distal extension. So it isn't for sure apparently. I wonder if she just restricts her activities so much that her lower unfused levels are not damaged.

[Tina_R]

On the other hand we have at least one member here (Susie*Bee) who has a long fusion ending at L4 who seems like she may never need a distal extension. So it isn't for sure apparently. I wonder if she just restricts her activities so much that her lower unfused levels are not damaged.

You can probably develop osteoporosis from inactivity if it's in your makeup.

I'm just a regular Sally Sunshine today, aren't I?

[Tina_R]

Even if it was 90%, it is still probably lower than the problems with not having the initial surgery or else there would be no initial surgeries.

Fusion is about cutting your losses. But the backdrop is always loss. Parents who come on here debating surgery for their kids are comparing it against an imaginary reality of normal that is forever lost once the scoliosis is large. They can't let go of normal though they must.

I'm not sure about your first paragraph because I think doctors stick to what they know and try to improve it for as long as they can rather than try something different. In other words, fusion is all they have, so that's why it gets done. (Well, just now they have tethering.)

Your second paragraph is well expressed.

[Pooka1]

You can probably develop osteoporosis from inactivity if it's in your makeup.

I'm just a regular Sally Sunshine today, aren't I?

Lol! Good point. Still it is quite amazing how she has avoided an extension. It may be related to her hyper correction. Her spine is pretty darn straight. Also she has syndromic IS as my daughters likely do though a different syndrome. That may matter.

[LindaRacine]

If we ever have Medicare For All I wonder if government will make some improvements such as forcing doctors to keep data and contribute to a database for each patient that would follow them wherever they go. This would be anonymous and voluntary and would contribute to a national database. This would enable us to better study the progress of diseases and the results of treatments in large numbers of diverse people. There is probably no motivation for there to be such a database now, it just adds to the cost of care. Studies are done and data collected only when someone wants them done, probably motivated by money.

Or maybe Medicare For All would result in a less good medical system if the motivation for profit is removed, who knows. That's a political question.

There are already insurance provider programs that reward centers with higher reimbursement for tracking follow-up using standardized spine questionnaires. Unfortunately, follow-up is something that is very difficult for most centers, especially because, believe it or not, a large percentage of patients stop returning for follow-up when they feel they've recovered. At UCSF, we followed up with every patient that returned for follow-up care, but did not have the necessary systems in place to urge non-returning patients to come back for follow-up. They've recently started outsourcing questionnaires to a service, and I believe the other UCs are following suit. Doing all that follow-up is not inexpensive.

There are quite a few multicenter "study groups" that share data. When you see publications mention groups like "Spinal Deformity Study Group", "Harms Study Group", and "International Spine Study Group", that's as close as you're going to get to seeing decent quality published data.

There has been talk for years, about creating a database of all patients with spine implants. The logistics are just too much for the providers to carry out. What needs to happen is that the manufacturers of spinal implants should be the holder of that info, but I think there may be some HIPAA issues with that. And, there's probably not a real incentive for manufacturers to do the work, as they stand to lose business if their implants are found to result in high revision rates.

[LindaRacine]

"Even if 99 out of 100 people don't have any complications, the one person who did have a complication is affected."

Then you'd never have any surgery because there is a small rate of death from almost anything.

But what if the statistic is that 70% of people who have fusion need revision (which I heard on this forum)? That's certainly sobering and a good reason to think twice about having the surgery. Wouldn't you listen to the statistic in this case? Wouldn't you want to know about this?

Not only is there that statistic, but it's becoming obvious to me that the surgery brings on the need for more surgeries. There is causation.
Revisions are needed because the surgery itself inflicts harm, although the manifestation may be delayed by years. Or it may not, it may show up in a few months, like with me.

I know, the disease is terrible, too. But I think patients have the right to know about the inherent problems of the surgery, and they don't get that information. I received scant information from my surgeon, his renowned hospital, my local "spine center", and my GP.

I think it is absolutely essential for patients to be as informed as possible, and I hope most surgeons agree with that. I hope most surgeons aren't quoting revision rates because they're trying to hide that info in order to trick patients into having surgery. I think they don't report it to patients mostly because there's so much conflicting info. When you have one group reporting 10% revision rate and another reporting 40% revision rate, what number do you use? And, it's not nearly that simple, as it's not just two groups reporting... it's dozens.

Although complex spine surgery has a relatively high likelihood of causing additional problems, I think the largest percentage of revision surgeries are for adjacent segment disease (ASD). The risk of ASD can be reduced by surgeons who really know what they're doing, but even the best surgeons have a bunch of patients with ASD. Scoliosis causes asymmetric loading on discs. That, and age, are the real reasons revision rates are so high.

--Linda

[Pooka1]

Although complex spine surgery has a relatively high likelihood of causing additional problems, I think the largest percentage of revision surgeries are for adjacent segment disease (ASD). The risk of ASD can be reduced by surgeons who really know what they're doing, but even the best surgeons have a bunch of patients with ASD. Scoliosis causes asymmetric loading on discs. That, and age, are the real reasons revision rates are so high.

--Linda

While some ASD cases are probably due to selecting the wrong end vertebra, it seems like there is no right vertebra when talking about the lumbar. That is going to drive many revisions. Only the pure T fusions are going to potentially escape a revision unless the entire lumbar is fused on the first go. And then we have the ped guys who apparently will not fuse a kid's entire lumbar knowing they will need it down the road. It seems like these surgeons are deciding for (at least) two surgeries for these children by themselves. Maybe they consult the parents but I bet it is more like steering them to not doing the entire lumbar.

And I was wrong about double majors being the second most prevalent AIS curve. It is TL/L which is just as problematic in terms of lumbar involvement. Life is very unfair.

[JScoli91]

When you say “pure T fusions” could escape a potential revision are you meaning original fusions that are only in the thoracic vertebrae without extending above or below that? I am fused T2-T12 and everything above looks good and fine while my lumbar is crumbling. It had an existing curve before fusion and after and now it is getting worse, hence the need for another fusion within the next few months.

The surgeon I am having do the revision looked at my original xrays and said, “it’s easy for hindsight to be 20/20 but at looking at these images I’m curious why your original surgeon didn’t fuse you down to L2. If he would have gone down 2 more levels I don’t think you would have ever had to deal with another fusion.”

I was kind of surprised when he said that, also angry at the original surgeon back when I was 12. But, we can’t change the past and can only move forward. Looking back on it a lot of what that surgeon did makes me go “huh?” He very clearly told both my parents and me that my first fusion would be my last fusion, that it would never get worse and after surgery scoliosis would not be something I HAVE but something I HAD. I guess I know now, after thinking it was just a part of my past dead and gone, he was wrong.

[Concerneddad]

While some ASD cases are probably due to selecting the wrong end vertebra, it seems like there is no right vertebra when talking about the lumbar. That is going to drive many revisions. Only the pure T fusions are going to potentially escape a revision unless the entire lumbar is fused on the first go. And then we have the ped guys who apparently will not fuse a kid's entire lumbar knowing they will need it down the road. It seems like these surgeons are deciding for (at least) two surgeries for these children by themselves. Maybe they consult the parents but I bet it is more like steering them to not doing the entire lumbar.

And I was wrong about double majors being the second most prevalent AIS curve. It is TL/L which is just as problematic in terms of lumbar involvement. Life is very unfair.

I think a lot of ped-orthos are up front that there is no guarantee that the lumbar won't eventually have to be fused unless they can get it straight (the figure I've seen is they shoot for less than a 10 degree tilt on L4, with anything over 15 degrees likely to need future surgery). Now, maybe they undersell exactly how likely -- "you might need future revision surgery" when the odds are well over 50%, etc. -- but I think that a lot of docs are clear that it's a possibility.

All of that said, I do think that there is something to be said about leaving the lumbar unfused in adolescents, even if you know that there is a good likelihood that it will have to be fused eventually. A lot of adolescents are heavily involved in things like sports and dance and music where they need that mobility. By leaving the lumbar unfused, you give (most of) them the opportunity to continue with that. That experience may be worth a second surgery. Plus, if you can delay revision into the late 30s or beyond, you can probably keep them relatively mobile when they have small children, where mobility is also important.

[LindaRacine]

Now, maybe they undersell exactly how likely -- "you might need future revision surgery" when the odds are well over 50%, etc. -- but I think that a lot of docs are clear that it's a possibility.

Where did you get that number? I don't think anywhere near 50% of kids fused go on to need revision.

--Linda

[Concerneddad]

Where did you get that number? I don't think anywhere near 50% of kids fused go on to need revision.

--Linda

Oh, I was unclear. I'm not saying 50% need revision -- I was saying that docs might understate the chances for those particular kids who have a relatively high chance. I was just using a 50% case as an example. (I have no clue whether there would be a case where the chances were that high and the doc didn't just fuse down into the lumbar.)

[LindaRacine]

This thread has gotten a bit confusing, as both pediatric and adult surgery are being discussed.