Natural fusion from calcification/arthritis

[hdugger]

Here's a recent review for that revision range - http://journals.lww.com/spinejournal...urgery_.7.aspx - which lists the revision rate between 4 and 25% for pediatric patients.

[Pooka1]

No there are no guarantees. But that doesn't mean nothing is known about certain fusions being one-stop shopping for most players who have that type of fusion.

[hdugger]

I'd be very hesitant to present scoliosis surgery as "one-stop shopping" for any subset of surgical patients when there's a revision rate that ranges up to 25% in adolescents (and ranges higher when you include adults and/or surgeries requiring extension). The phrase implies something like a cure. While surgery has certainly advanced, it is not a cure. It's a not-so-great solution which seems good only in light of the alternative of an advancing curve.

[Pooka1]

What is known of most T fusions is not distinguishable from "cure" using any normal definition of "cure" you can find. I have made this point a few times before.

The long term so far on most T fusions either is or isn't one stop. I suggest it provisionally is one stop based on evidence in hand.

That doesn't mean all T fusions won't time out after 30, 40, 50 years with H rods or pedicle screws. But that's not the way the cards are being dealt now. We can't know that like we can't know if we are going to get hit by a bus. Both probably have similar chances of occurring.

[mariaf]

I hear so many persons referring to Hawes as a great example to be emulated.

She's just one person.

Why do we not see hundreds of Hawes?

AMEN!

She IS just a person, one person. Like Karen, I can't figure out why she is referenced over and over again. I've even seen her referred to as a 'hero'. I'm not saying anything positive or negative about her, but to me the term 'hero' brings to mind soldiers fighting overseas, kids (and adults) bravely battling cancer and other life-threatening illnesses. It does not bring to mind Hawes.

[Pooka1]

AMEN!

She IS just a person, one person. Like Karen, I can't figure out why she is referenced over and over again. I've even seen her referred to as a 'hero'. I'm not saying anything positive or negative about her, but to me the term 'hero' brings to mind soldiers fighting overseas, kids (and adults) bravely battling cancer and other life-threatening illnesses. It does not bring to mind Hawes.

Agreed. Hawes appears to be a unique case of someone addressing their lung issues with chest expansion exercises that coincidentally had the effect of reducing her T curve by about 22%. She embarked on thousands, even not tens of thousands of hours of PT and massage that others don't have the time or patience to attempt. She had the time and patience and I guess she can be lauded for finding a way to resolve for lung issues albeit in a blind, shotgun, trial/error approach over several years.

This case has been known and yet no others have stepped forward to say they did the same.

I think the reason she is exalted is that she is viewed as "beating" the need for surgery. But of course her situation with the asymmetrical chest cavity is completely irrelevant to the vast majority of scoliosis patients.

Thus case of Hawes does not appear to be at all instructive or helpful to most scoliosis patients out there.

She is best described as "unique" and "damn lucky" though that is enough to be the poster girl I suppose.

[mamamax]

There is a difference between chest wall deformity and rib cage asymmetry (by medical definition). Martha has both, given that she has PE. Anyone with a thoracic curve, also has rib cage asymmetry. Having both (in Martha's case), she improved both while experiencing a reduction in cobb angle, so this is another indicator that exercises which may improve breathing, may also affect curvature. In cases where curvature reduces (through Schroth, Yoga, and Clear, etc) there is also improvement in chest wall expansion, or ability to breathe.

While Martha did employ intense exercise programs - significant improvement in cobb angle and chest wall expansion did not occur until - she stopped the intensive exercise programs and focused on exercises to improve breathing.

There are other Martha's out there, she is not the only one. She is the first adult to be scientifically documented and published.

The significance of her findings ... well, her work speaks for itself.

[mamamax]

Just carrying this over from the other thread - the SEAS group has shown reductions in lumbar curves as well as in double major curves. So, there do seem to be exercises which target and hold (or may even reduce) a variety of curves.

Starting to become very fond of those Italians :-)

[Pooka1]

Mehera,

If you are speaking to an orthopedic surgeon soon, you may want to ask him about where he thinks the natural fusion is going in your lumbar and if you still can avoid a fusion into the lumbar at this point.

I don't know how much reading you have done but it would truly be a damn shame if you had to be fused through the lumbar in addition to the thorax simply for delaying fusion of the thorax too long. There seems to be an alarming number of long fusions in adults compared to kids so there must be a reason driving that.

That is, you should ask if you get the thorax fused now if that would save you needing a fusion through the lumbar also later.

I realize you are not at a pain level now to get the fusion but you clearly have this other ancillary issue that is affecting your lumbar. There is a countdown when the lumbar is involved wherein more surgery is predicted that is not present with a thoracic fusion. I have only one natural fusion in my lumbar and I am now experiencing that countdown as far as I can tell. The thoracic, if done soon enough, is though to be "one-stop shopping" for surgery.

Both my daughters had thoracic fusions and they look and feel normal. They have no restrictions (except bungee jumping). They don't do anything differently. The people with lumbar fusions are still completely functional but do things differently. The kids don't have restrictions but I am not so sure about adults.

I'm obviously not a surgeon but I don't think you have to be one to see this coming because it is pretty obvious. I think you would kick yourself if you needed a fusion into the lumbar when/if it could have been avoided. I know I would kick myself over that. I'm just saying you might want to consider more than just your present pain level when thinking about surgery. It could mean all the difference.

Good luck.

[livingtwisted]

Hi Pooka,

I appreciate the concern, but I don't think much has changed for me in the last 17 years in terms of what vertebrae would be fused. I have both a large thoracic and lumbar curve (I just don't have the cobb angle measurement for the lumbar). The thoracic has progressed 10 degrees in 17 years. From what I understand, this is below average for the natural progression in an adult, and I believe I was still growing for a few of those years. This amount of change could also be largely due to human error in reading the x-rays. I don't have the exact vertebrae that would be recommended for fusion, but I'm fairly certain it would be a long area including the lumbar, and has been that way since I was 13.

I last saw my orthopedist in September at which time he said I would probably need surgery eventually, but that he does not see any urgency to it. I asked if he recommended that I do it before I have children in case pregnancy causes it to progress more rapidly and he said he didn't think that was reason enough to do it. He has cautioned me that unless the pain becomes unbearable or I lose significant lung function, there is no reason to get fused at my age. I'm not due to visit him again until next September to check for any progression.

Maybe you are right that I'll be worse off later on, but there's just no way of knowing and I can't imagine taking the plunge with a good chance of ending up worse off now. Or I could have the surgery and recover fine for now, but still need revisions in 10, 20, 30 years. And who knows what advancements in the technology will be made in my lifetime -- maybe in 20 years they'll just be zapping something in our brains and not even touching our backs!

[Pooka1]

Hi Pooka,

I appreciate the concern, but I don't think much has changed for me in the last 17 years in terms of what vertebrae would be fused. I have both a large thoracic and lumbar curve (I just don't have the cobb angle measurement for the lumbar). The thoracic has progressed 10 degrees in 17 years. From what I understand, this is below average for the natural progression in an adult, and I believe I was still growing for a few of those years. This amount of change could also be largely due to human error in reading the x-rays. I don't have the exact vertebrae that would be recommended for fusion, but I'm fairly certain it would be a long area including the lumbar, and has been that way since I was 13.

I last saw my orthopedist in September at which time he said I would probably need surgery eventually, but that he does not see any urgency to it. I asked if he recommended that I do it before I have children in case pregnancy causes it to progress more rapidly and he said he didn't think that was reason enough to do it. He has cautioned me that unless the pain becomes unbearable or I lose significant lung function, there is no reason to get fused at my age. I'm not due to visit him again until next September to check for any progression.

Maybe you are right that I'll be worse off later on, but there's just no way of knowing and I can't imagine taking the plunge with a good chance of ending up worse off now. Or I could have the surgery and recover fine for now, but still need revisions in 10, 20, 30 years. And who knows what advancements in the technology will be made in my lifetime -- maybe in 20 years they'll just be zapping something in our brains and not even touching our backs!

Okay that was well reasoned. I would still ask specifically about how long your fusion would be now compared to if the natural fusion continues on its present course at its present rate 5 years, ten years, etc. down the road. The surgeon might be able to tell you with high accuracy whether that train has left the station or if it hasn't where that train is heading.

I also would question the surgeon specifically why you were told you would need a fusion into the lumbar when it seems you have a thoracic curve, NOT a double major. That doesn't sound right. I suggest it might be extremely atypical given that some surgeons will not fuse the lumbar in kids who even have a frank double major (such is the want to avoid fusing into the lumbar because of the countdown). There is only one other testimonial on here that I have read wherein a person had a T curve and the surgeon wanted to also fuse the lumbar. Her need for a long fusion might be due to calcification below her T curve. Who knows.

It probably will still play out like you have stated but I just don't get the vibe that you are being completely informed on the length of fusion issue given the recent(?) calcification in your lumbar. Neither of my kids had any lumbar issues as far as I know nor are either expected to need any more back surgery, perhaps in part because we caught it before any ancillary damage to the lumbar. Both kids bent out the lumbar completely. You just want to avoid that lumbar becoming structural. People with lumbar and double majors are just unlucky unfortunately... people with thoracic curves can make their luck to some extent.

If you feel you have this issue nailed then you do.

[Pooka1]

Oh by the way, I agree it is possible your thoracic curve has not progressed like you say. We have at least 3 other folks here who were clearly into surgery territory whose curve hung there, sometimes for decades. So you curve may not progress even though that is the norm.

[livingtwisted]

I also would question the surgeon specifically why you were told you would need a fusion into the lumbar when it seems you have a thoracic curve, NOT a double major.

I'm not sure how you're determining that it is a thoracic curve only, but since I haven't spent a lot of time focusing on my stats I'll let you be the judge... Below is the exact hand written scrawl from my last measurements:

T6 to L2 = 63*
R Thoracic Curve
Stable zone L2

And I'm also attaching a photo taken about 5 years ago. I've always thought it was an "S" curve because of my protruding left hip, but you tell me.

Maybe you can also clarify for me why having a natural fusion in the lumbar would require a longer fusion. I have not read anything about this specifically. If it's already fused, what exactly would they be doing?

Neither of my kids had any lumbar issues as far as I know nor are either expected to need any more back surgery, perhaps in part because we caught it before any ancillary damage to the lumbar.

How is the ortho able to determine that they won't need any more surgery? How old are your kids now and when did they have surgery? Did the ortho say that the metal was guaranteed to last a lifetime? And isn't it fairly common that even if the surgery was completely successful, it can put extra stress on the adjacent vertebrae, which would then in turn need to be fused eventually? It's great that they are doing so well, btw!

[Pooka1]

I'm not sure how you're determining that it is a thoracic curve only, but since I haven't spent a lot of time focusing on my stats I'll let you be the judge... Below is the exact hand written scrawl from my last measurements:

T6 to L2 = 63*
R Thoracic Curve
Stable zone L2

This is the proof positive you only have a Thoracic curve. You have a right thoracic curve (the most common curve type by the way and same as both my daughters) and there is no measurement of the lumbar given because it is not structural. I never at any point was given a measurement on my kids' lumbar curves because they were not structural and therefore irrelevant. Indeed the one lumbar corrected completely on the table during surgery and the other corrected mostly on the table and a bit more over time but not completely. The non-structural curves are not relevant to issues of fusion in general.

And I'm also attaching a photo taken about 5 years ago. I've always thought it was an "S" curve because of my protruding left hip, but you tell me.

A radiograph would be better but if I had to wager $1,000 just from the picture I would go with straight thoracic based on how my daughters looked, NOT double major. The report corroborates this... you have a STRUCTURAL thoracic curve ONLY and you appear to also have a compensatory lumbar which might disappear on the table after fusion as it did for my one kid.

Maybe you can also clarify for me why having a natural fusion in the lumbar would require a longer fusion. I have not read anything about this specifically. If it's already fused, what exactly would they be doing?

I believe you said you were told that you would need a long fusion. I don't understand why you would given you have a T curve unless the calcification would force it. I am not sure if they would have to break up the lumbar so it can try to straighten by itself if you have the thorax fused or if it is too damaged and they would have to fuse it. I guess it would depend on how well it was fused and if they thought it would be stable. I really have no idea.

How is the ortho able to determine that they won't need any more surgery?

I think he is extrapolating from the first generation instrumentation wherein most T fusions are one-stop shopping even for that instrumentation. With third generation hardware I guess he feels he is able to tell me it is one-stop shopping with great confidence.

There is no "countdown" with most successful T fusions to my knowledge.

How old are your kids now and when did they have surgery?

They are 16 now. One had surgery in 2008 and one in 2009.

Did the ortho say that the metal was guaranteed to last a lifetime?

Not specifically. He told me twice that my kids are not expected to need any more back surgery in their life due to scoliosis. He used the phrase "one-stop shopping for surgery" so I use it.

And isn't it fairly common that even if the surgery was completely successful, it can put extra stress on the adjacent vertebrae, which would then in turn need to be fused eventually?

Only with fusions that go into the lumbar. That can happen with T fusions but it is not expected and is not the norm. That's why it is CRITICAL that you get a handle on that since you only have a T curve at the moment. It is alarming that so many older adults have long fusions and I wonder if they couldn't be shorter if they acted sooner. There are some surgeons who will fuse curves in kids that are sub-surgical mainly to save having to go further into the lumbar per some testimonials here so it is critical.

It's great that they are doing so well, btw!

Thank you. After the diagnosis which was BAD luck, we got lucky from several standpoints the most important of which is having a great surgeon.

My one kid is going to what I assume is her last appointment tomorrow. She will be released and is done with scoliosis as far as I know and as far as what is known. Of course nobody knows what T fusions do 50 years later but there is no reason NOW to think they won't be stable given the few decades of data in hand.

[Pooka1]

By the way, that comment about stable zone = L2 sounds good though I really don't know what they mean. Did you do any bending films? If you leveled L2 then they might stop the fusion at L1 and you would feel normal and probably look normal depending on how stiff your curve is.