The surgery decision in scoliosis

Short answer: Most children who are given a diagnosis of scoliosis are a long way from the point at which surgery is assessed. In practice the region around 45 to 50 degrees is treated as the band where surgical assessment begins, and reaching that band does not mean a decision to operate has been made. The decision belongs to a spine surgeon. This page does not answer the questions families search for most: how successful an operation is, how much of the curve changes, what the risks are, where the scar sits, whether the rods stay for life, what surgery does to height, and what sport is possible afterwards. None of the studies collected for this guide reports those figures, so no number is offered for any of them. What the page does instead is say where each of those questions is answered, and give you a list you can print and take into the consulting room.

Most of the families asking this are far from the threshold

The word surgery tends to enter the room on the day of diagnosis without anybody actually saying it. The physician confirms that there is a curve, sets a follow-up appointment for a few months' time, and the family walks back out to the car. The first page opened at home that evening is usually about the operation itself. The order of searching is almost always the same as well: photographs taken before and after an operation, then pictures of rods and screws, and somewhere in the third or fourth tab a forum post describing the worst case anyone has met.

The numbers do not support that order of priorities. In the nationwide screening study carried out in Turkey, nine out of ten of the children found to have scoliosis had a curve that fell in the mild band. Where that proportion comes from, how the study was run and its full citation are given on the scoliosis in children and adolescents page.

Today's measurement does not settle what next year's will show.

In a child who is still growing the angle can move, which is the whole reason follow-up appointments exist, and it is why that proportion should be read as background rather than as a promise about one child. Even so, the sentence a parent forms on the day of diagnosis, that this is heading for surgery, turns out not to be true for most children. The photographs in your search history belong to children who did have surgery, which is a group selected in advance.

What this page answers, and what it does not

The questions below are among the most searched by parents, and this page will not answer any of them:

• How successful an operation is and how many degrees of the curve can be changed
• The risks and complications, and in particular the likelihood of nerve injury, paralysis or infection
• Where the scar sits, how long it is and how it looks as time passes
• What fusion, meaning the joining together of spinal levels, does to a child's growth in height
• Whether the screws and rods stay in place for life
• How much bending and twisting is possible afterwards, and whether a child returns to sport
• How long the hospital stay and the recovery take
• What separates one surgical technique from another, and which one suits which child

The plainest reason for leaving these blank is that the material behind this guide contains no such data, and naming a question and leaving it open was preferred to publishing a percentage nobody has checked. Beyond that, these headings sit outside physiotherapy altogether. The answer in any case depends on one child's own picture, and the person able to read that picture is the spine surgeon. A general average has no meaning for a single child.

Plenty of pages online answer these questions with percentages and cite nothing, and a number with no source behind it produces an impression rather than knowledge. Anyone who publishes a figure is also obliged to say which group of patients and which study it came from.

The questions this page can answer fall into a different set: the band of degrees at which surgery comes up, what crossing that band does and does not mean, who makes the decision, what conservative care is aiming at in this situation, what the evidence on bracing and exercise says about avoiding an operation, the point at which that evidence goes quiet, where physiotherapy stops, and which concrete questions are worth taking to the surgeon.

The band of degrees at which surgery comes up

A diagnosis of scoliosis is made when the Cobb angle (the degree of curvature measured on an X-ray) is 10 degrees or more and rotation around the axis of the spine can be made out. What the degrees mean across the whole range is set out on the what scoliosis is page. Only the upper end of that range, the part that concerns surgery, is dealt with here.

Two thresholds can be quoted directly from the 2016 SOSORT guideline. It states that above 30 degrees at skeletal maturity (the point at which the skeleton has finished growing) the risk of progression in adulthood increases, and that above 50 degrees there is a consensus that progression in adulthood is almost certain. That consensus is part of why the conversation about surgery concentrates around 50 degrees. The guideline does not draw the link itself, but the clinical meaning of the threshold lines up with it. The question is what the next fifty years look like carrying that number, rather than how the back looks today.

The limit for surgical assessment is widely cited as somewhere between 45 and 50 degrees. Curves that pass 45 degrees while a child is still growing, and curves that keep progressing above that band once growth has finished, are referred for surgical assessment. These two figures are limits widely accepted in the practice of the Scoliosis Research Society (SRS) and of SOSORT (the international society for scoliosis orthopaedic and rehabilitation treatment) rather than a numbered rule set out in any single named document, and they come from accumulated clinical practice. Writing that distinction down matters, because it stops the number from looking more precise than it is.

The measurement itself carries a margin. A difference of a few degrees between two X-rays may come from the natural variability of two separate measurements rather than from any real change, and that margin is not small. Two films taken months apart work as a comparison when the child stood the same way for both and the angle was read by the same method, which is why a physician asks for the earlier film rather than the report alone. Nobody says a curve has progressed on the strength of a single measurement. What is followed is the direction shown by measurements taken in sequence.

Crossing the threshold is not the same as a decision

The angle enters the 45 to 50 band and the appointment changes character. The surgeon measures again, asks how much growth is left and puts the two previous X-rays side by side. Questions that were not asked before get asked, about how the trunk sits when the child stands relaxed and about what the height records of the last year show. That is an assessment. It can end in an operation, and it can equally end in follow-up simply carrying on.

What the surgeon weighs in that assessment goes well beyond the angle:

• The child's remaining growth, meaning how far along the way to skeletal maturity they are
• The direction shown by successive measurements, meaning whether the curve is holding steady or progressing
• Which region of the spine the curve sits in, and whether there is one curve or two
• The balance of the trunk, the level of the shoulders and the pelvis, and how the child stands as a whole
• The child's own complaint, and how daily life is affected
• The decision of the family and of the child, because an operation is carried out with the patient's consent

The reverse holds as well. Staying under the band does not close the subject. Because curves that pass 30 degrees at skeletal maturity carry a raised risk of progression in adulthood, follow-up continues after growth has finished. The adult period is taken up separately on the scoliosis in adults page.

One sentence gets repeated on this page, and it belongs here too. The decision about surgery is the physician's. A physiotherapist cannot make that decision and cannot set it aside. Saying whether a curve needs an operation lies outside the authority of physiotherapy, and any source that does so has stepped past its limit.

What conservative care is aiming at here

The 2016 SOSORT guideline separates the goals of care according to the severity of the curve. In a severe curve the primary goal is to stay below 45 degrees and the secondary goal is to delay surgery. That is the guideline's own wording, and the order of those two goals describes where conservative care sits in this situation.

The point of care during the growth years is to bring the child to skeletal maturity with the lowest number that can be managed. That number, the one reached at the end of growth, is what shapes the decades after it, and that is why reversal of the curve is the wrong thing to measure the work against. A brace and scoliosis-specific exercise are the tools used towards it.

It is striking that the secondary goal is named as delay, and the word deserves an honest reading. Delay and prevention are different things, and the guideline uses the weaker of the two words. In a young child with a progressing curve, moving an operation to a later stage of growth is a gain in itself, and it still leaves the operation on the table. Writing this down as a separate goal is an acknowledgement that conservative care does not take surgery out of the picture for every child.

When a brace comes into the picture is a separate matter. In progressive curves during growth, bracing is generally discussed once the curve passes 25 degrees. The daily hours, the compliance problem and how a brace fits around school are covered on the bracing and exercise page.

Can exercise and a brace keep us out of surgery

This is the real question behind most families' commitment to conservative care, and it usually gets saved until last. The answer takes the shape of a probability.

The study that shows the place of bracing most strongly is BrAIST. In it, some of the children given a brace were kept from reaching the surgical limit, and in the rest the outcome did not change. The figures, the design of the trial and who was included are given on the bracing and exercise page.

That finding comes with a condition attached. In the trial, the number of hours a day a child actually wore the brace was what separated the two outcomes, and a brace worn for fewer than six hours a day gave the same result as no brace at all. The effect of daily wearing time is set out in detail on the same page.

BrAIST did not count operations at all. What it counted as failure was a curve reaching 50 degrees, so the phrase "protection from surgery" is an inference drawn from that number.

On the exercise side the picture is more cautious. Reviews that gather the evidence on scoliosis-specific exercise report that the measurable effect is seen mostly in mild curves, and that in curves approaching the surgical band the results were not significant against control groups. The numbers in that debate, the citations and an assessment of how certain the evidence is are again on the bracing and exercise page.

The sentence that belongs to this page is narrower. In a child for whom surgery has been indicated, exercise does not take the place of surgery. "We will keep you out of surgery with exercise" is a sentence no study supports, and it cannot be promised to a family. The less ambitious sentence is the more useful one: conservative care may change the probability, and it does not tell you the outcome in advance.

Where the evidence goes quiet

A parent asks how much a programme lowers the chance of an operation, and the honest reply is that the studies were not built to answer that question. Under the heading of surgery the gap is plain, and hiding it works against the family.

What bracing and exercise studies usually measure is whether a curve reached a defined number of degrees, or how many degrees the Cobb angle changed over a period of six months to two years. Surgery is rarely the endpoint they record. A decision about surgery is made on a much longer time scale, and by looking at individual children. That gap is the real distance between the evidence and the question a family is asking.

The clearest example turns up in one of the randomised trials of Schroth exercises. When the six-month Cobb angle results were published, the authors listed one limitation of their own: nobody yet knows whether these exercises change how many children go on to surgery. The people researching the question say themselves that the answer is not in hand.

Conservative care keeps its place after all of that is said, because the guideline's ordering of goals and the evidence on bracing both stand. What is left, once that is said, is a much smaller claim: there is no study standing behind the sentence "do this programme and you will not need an operation." If you meet a source that says it, ask for the name of the study it rests on.

What happens if there is no operation

This question should be askable without being judged. Sometimes it is genuine curiosity, and sometimes it is the quiet admission of a family who cannot carry on with the process for financial or practical reasons. Setting two pieces of information side by side is more use than brushing the question aside.

The first is a study that followed untreated idiopathic scoliosis over fifty years. Chronic back pain was reported more often in the group with scoliosis than in the comparison group, but most of that pain stayed in the mild to moderate range. Life expectancy was no different from what would be expected, and that finding answers directly one of the fears families find hardest to say out loud. The proportions and the detail of the study are given on the scoliosis in children and adolescents page. The limit of that data applies here as well: the group in question was untreated and had late-onset curves, so it cannot be carried straight across to a child who is being followed today and given a brace if one is needed.

The second piece of information runs the other way, and it is the 50 degree consensus in the SOSORT guideline. Above that value, progression in adulthood is expected to continue. So "nothing will happen" is not a true sentence either.

The two findings are read together. A decision is made by comparing a known course with a known intervention, and there is no choice on the table between an operation and a catastrophe. The person who can make that comparison on your own child's X-ray is the spine surgeon. These two paragraphs exist so that you arrive at that appointment prepared.

Where physiotherapy stops, and where it does not

Here is the part that most descriptions of physiotherapy leave out. In scoliosis, physiotherapy does not do any of the following:

• It does not diagnose. A diagnosis of scoliosis is made by a physician, on an X-ray with the Cobb angle measured.
• It does not order imaging and does not direct investigations.
• It does not prescribe a brace. The decision about a brace and about its type belongs to the physician.
• It does not decide about surgery, and it does not overturn a decision a physician has already made.
• It does not offer an alternative plan to stand in place of the physician's.

In practice this is straightforward. Where a curve has reached the band for surgical assessment, the referral to a physician comes first, and a programme is built only after the physician's assessment. The route is the same where there are neurological signs, pain that wakes a child at night and does not settle with rest, or an appearance that is changing quickly. What those signs are is written out one by one on the noticing the signs at home page, along with why marked back pain should be looked into rather than put down to the scoliosis.

If you have moved to İzmir recently, the route to a spine surgeon here may not be obvious. In Turkey it usually begins with the family physician at the family health centre (aile sağlığı merkezi) where the child is registered, or with a paediatrician, who examines the child and refers them onward. The referral goes to orthopaedics and traumatology (ortopedi ve travmatoloji), which is where spine surgery sits, or to physical medicine and rehabilitation (fiziksel tıp ve rehabilitasyon, usually shortened to FTR), and imaging follows only if the physician asks for it. In the state system, appointments are usually made through the central appointment service, while private clinics are contacted directly. Some hospitals run their own booking arrangements, so it is worth checking before you set out. What mainly separates the two routes is how long you wait, and which of them suits a household is not a decision a guide can make for you.

One further thing about the system here: scoliosis is not part of any national screening programme in Turkey. Screening runs through protocols signed at province level, so whether a child was ever checked at school depends on the province and on the year. That background is on the scoliosis in children and adolescents page, and it is the reason a curve is sometimes first noticed at home rather than in a school hall.

What physiotherapy does begins after the physician's assessment. How that assessment runs and how a programme is built are described on the what happens in a session page. The practice is in Bornova, at Evka 3, and consultations can be held in English, including the short introductory call that comes before a first appointment.

Questions to take to the surgeon

The time in a consultation is short, and very little of what is said in it stays in the memory afterwards. The list below was put together to be printed and carried in, with the answers written next to each question. The questions were drawn from what parents actually ask, and the headings this page does not answer have been placed inside it.

1. What is my child's Cobb angle today, which X-ray was it measured on, and is the difference from the previous measurement inside the margin of measurement?
2. Where does this angle stand in relation to the limit for surgical assessment? Is surgery on the table now, or is follow-up continuing?
3. What stage of skeletal maturity is my child at, and how much growth is left? What are you looking at to tell me that?
4. If surgery does come up, what would the timing be? What is gained and what is risked by waiting?
5. What are you aiming at with this operation, and what is your priority in this child?
6. What outcome is expected from this operation, how much change in the curve do you foresee, and what is that expectation based on?
7. What are the known risks of this operation? How often are nerve injury, paralysis and infection seen, and what is your team's experience?
8. How many levels of the spine will be included? Will that affect my child's everyday movement?
9. Will the screws and rods that are placed stay for life? Which situations would require them to be removed?
10. Will the operation affect my child's growth in height?
11. Where will the scar be, how long will it be, and how does it look as time passes?
12. How long is the hospital stay, when is school possible again, and what time frame and what conditions do you foresee for a return to sport?
13. Will there be physiotherapy before and after the operation? In which period, and which movements will be free and which restricted?
14. If we want a second opinion, which records should we take with us?
15. If the decision is put off for now, how often will we come for review, and which signs should bring us in without waiting?

For some of these the answer may be "we cannot know that at this point." That is not a bad answer. It is more trustworthy than an answer that presents the unknown as known. If you can, go to the appointment with two adults, so that one can talk while the other writes. Have the child in the room as well, because some of these questions belong to them.

What to have with you at the appointment

Getting something useful out of an appointment with a surgeon depends largely on the records you bring. The following help:

• Every spine X-ray taken to date, as film or as a digital record, with the dates
• The Cobb values written in the reports, and the Risser stage where it is given (a grading read from the pelvis on an X-ray that indicates how much skeletal growth is left)
• Your child's height measurements over the last year or two, the record that shows when growth sped up
• For girls, the date of the first period, because it is asked when remaining growth is being judged
• If a brace is in use, which type it is and how many hours a day it is worn on average
• Two or three questions the child has written themselves

Records do not always travel with you from one hospital to another, so carrying the films and the reports yourself is the simplest way to let a new physician compare measurements across time. A photograph of a film taken on a phone is easy to carry and harder to measure from, so the original record is worth taking as well. Asking for a second opinion is not read as distrust of the first physician. Wanting two separate assessments before a decision that cannot be undone is ordinary and legitimate.

What is in your hands while the decision is waited on

When surgery is on the table, a family often spends the weeks between two appointments not knowing what to do. The complaint parents voice most often is that they leave the consulting room without a concrete task. A few things can be done during that wait, and none of them interferes with the physician's decision.

• Collecting the X-rays in one place in date order, with a note of when each measurement was made and at which centre
• Writing the date of the next review on the same page as the films, since that is the appointment most easily lost in a busy term
• Asking for measurements to be taken under conditions as similar as possible, since a comparison only means something when the conditions match
• If a brace is in use, writing the daily wearing hours on a simple chart, which is a more reliable record than an estimate given from memory in the consulting room
• Noting down the questions that occur to the child in the weeks in between, because the question that does not come to mind on the day is usually sitting in those notes
• If an exercise programme has been given, marking the days it was done and the days it was not, exactly as they were

None of these tasks is trying to change the decision, and what they do instead is put a better record on the table when the decision is discussed. Small, concrete work of this kind is usually also what reduces a family's sense of helplessness.

Where physiotherapy sits after surgery

In a child who has had surgery, the surgeon draws the boundaries of physiotherapy, and physiotherapy works inside that frame. Which movement is free and when, how long a particular load stays restricted, and when a programme can begin all depend on the surgeon's decision.

On the place and the effect of scoliosis-specific exercise in the period after an operation, the evidence collected for this guide is silent, so no programme is described here. The one thing that can be said is that the programme for a child who has had surgery is not built the same way as the programme for a child who has not, and that it does not start without the surgeon's approval.

This section is written to the adolescent

The next few paragraphs are addressed to you directly.

You probably heard the word surgery in the middle of an adult conversation and then searched for it on your phone that evening. The photographs you found belong to people who had an operation, which means they are examples from the heaviest end. Your X-ray is not their X-ray, and your number cannot be read by comparing it with somebody else's.

One thing that helps to know is this: it did not happen because of anything you did. It did not happen because you carried your bag badly, or sat hunched over a desk, or played sport. The cause of scoliosis is not fully known today, and you are not to blame for something nobody has explained.

You can ask the questions too. You are in the room during the appointment, and some of the questions are really yours, especially the ones about the scar, about sport and about going back to school. Asking the physician directly is not thought odd; it makes the work easier. If there is something you did not follow, "I didn't understand, could you explain that again" is a sentence that works at any age.

And one more thing. You are the person who does the exercises. The therapist demonstrates and your family reminds you, but the movement is yours, and only you know whether you repeated it a few times in the week. That is the part of all this that is genuinely in your hands.

Who makes the decision, in one sentence

The decision about surgery is the spine surgeon's, and it is made with the family's consent. Physiotherapy works before and after that decision inside the frame the physician draws, and does not interfere with the decision itself. The purpose of this page cannot be to make that decision. It was written so that the right questions can be asked while the decision is being discussed.