Surgery should be last resort

[TAMZTOM]

I think if everyone posted before and after radiographs for ALL treatments... surgical, conservative and alternative, we would cut to the chase very quickly.

Ehm, that would establish that...ehm...rods are straight. It avoids the issues of them breaking, screws popping, discs degenerating, pain and other secondary problems of surgery, quality of life...etc.

There is no global statement that will cover every patient.

Exactly. The OP exposes the widespread practice by surgeons of advising, "Surgery or nothing."

...JIS is much more amenable to bracing than is AIS.

That too is misleading and sweeping. JIS/AIS is a tenuous distinction to start. Min Mehta had great success with REALLY young kids in casts. I have heard from dozens of parents of JIS kids, braced after 10 yrs old, who progressed in brace. Dozens of kids damaged by braces before 10 yrs old. It is not only surgery that needs more scrutiny.

Fusion of T curves has been shown to stabilize the spine including the L curve for at least two decades (the length of hte study) with minimal impact in remaining discs for all patients (small study though).

Has been shown for some. For every "some", there are some others who were NOT stabilised. And what happens to the "some" after 20 yrs? We know what happened with the Harrington generation. We don't KNOW what will happen to this generation. Surgery is experimental.
"Minimal impact in remaining discs"...as you say, small study, and "minimal" might be enough to cause major pain and worse.
I'm not picking nits, but you keep making sweeping statements that are not accurate.

Other fusions, those that are largely in the lumbar or that extend below about L3 are known to be problematic.

Now that is useful information for people contemplating this type of surgery. The OP wants this type of honesty from surgeons.

Those patients often need revision as I understand this... even pedicle screw constructs are not a stable, long-term solution necessarily when they extend that far in to the lumbar.

That again is invaluable information for people contemplating surgery...and I make NO suggestions about whether choosing surgery is the best option for many people. I would imagine that for many it absolutely is the best option.

Before and after radiographs, while abundant in the surgical sections, tend to be conspicuous by their absence in the bracing/PT threads.

I could take Tamzin for an x-ray this week. That x-ray WOULD show 5 degrees lumbar, <15 degrees thoracic. I could take her for another next week and it'd show 15 lumbar, 25 thoracic. I could possibly bribe her to stand in a posture that would exacerbate her curves and show 35 degrees. I could also have me x-rayed with a completely straight spine, then a curved one. The radiographer would say I had scoliosis; so would the surgeon. I don't have scoliosis. This type of confusion about what an x-ray reliably shows needs exposed.
And furthermore, perhaps the dangerous practice of multiple x-rays by those who post them in the surgical sections is indicative of the utterly pointless proliferation of x-rays in this "watch and wait till the curves progress" culture.

Martha Hawes has done this and did improve her curve but it seems like that resulted from the change in her chest cavity shape. She was not trying to decrease her curve but was only trying to avoid respiratory symptoms.

She WAS trying to decrease her curves, but that is a pointless debate. The salutary FACT is that she reduced her curves, and they were whoppers! All those who would decry the corrective benefits of corrective breathing take note! Breathing correctively can correct scoliosis! You heard it here first! :-)

Another case is the guy who did post his before/after PT radiographs, it was obvious he just decreased the compensatory lumber through exercise and/or postural change. The structural T curve was not affected and may have gotten a bit worse.

I think you refer to the guy who posted on here some months back, did a lot of stretching stuff? No one is going to base anything for or against anything on that. Why bother mentioning it? It's a bit like clutching at straws?

The only way bracing and PT can gain a foothold is with evidence of efficacy which is hard to come by when even large curves stop progressing on their own as seen by a few cases on this group.

Bracing is losing the strangle-hold it has exerted for donkeys years. Non-invasive exercise based treatments are entirely distinct from bracing. Bracing is tied to surgery--and doesn't stop the surgeries.

It's a game of cutting loses in my opinion. People who don't have rabid curves have time to try different things. Some kids don't have that luxury.

I agree, some kids don't have the opportunity to even try non-invasive correction. The OP opened the discussion for those who do have that opportunity...and this is an important discussion.

[Pooka1]

Hey Tom, I'm going to agree to disagree on some of those points and stand on the record.

There are two issues:

1. do any conservative treatments work to prevent surgery for life?

and

2. if they don't is the patient better off with or without surgery?

The jury is out on #1 and only a patient talking to other patients and consulting with one or more surgeons can answer #2. While there is plenty to lament about surgery, I think people tend to compare it to normal which of course is not the relevant comparison. They need to be comparing it to not having surgery and in the fact of potentially worsening symptoms and even disastrous results like losing a lumbar that could have been saved had the patient not dilly-dallied trying various conservative modalities. For my daughters, one almost for sure and the other maybe would be dead without surgery.

As far as I can tell, there are two sets of patients and two sets of parents. The ONLY thing that separates the two sets is whether they or their kids need surgery or not because there is no proven conservative method. There is no doubt in my mind that if the kids who had surgery had the parents of those now pushing conservative methods, virtually all of them would have had surgery. This is about facing facts and accepting reality for certain classes of cases (mainly AIS with large, progressive T curves and many Marfan's patients). There are a few exceptions but taking my one daughter's case where her curve moved 5* a month for the entire observation period of about 6 months, it's not like we had a choice. Many kids don't have a choice. They are just out of luck like that woman with the collapsed L curve under a subsurgical T curve. Life is unfair.

[Elisa]

Hi all, haven't checked in for quite a while, hope everyone is doing okay. Good to see the forum is still as active and interesting as it was the day I joined two years ago. Just wanted to make a couple of points on this thread.. of course surgery is ALWAYS a last resort.. especially when you live in British Columbia, Canada like I do b/c the wait lists are so damn long.. your spine will collapse waiting for an appointment!!

Medicine, like everything else in this world evolves with experience and knowledge. Comparing surgical procedures that were cutting edge 25 or more years ago is like comparing the evolution of monstrous computers to today's super sleek laptops.. no comparison at all so I'm not sure why people are even making this comparison in the first place.

My son had a wicked curve 110-115 degrees before he had his surgery/traction for a month/2nd surgery for spinal fusion about 18 months ago. He is doing extremely well. Yes I am concerned about things going wrong with his rods, and worry that wear and tear will put strain on his remaining un-fused discs but we had no choice but to go ahead with treatment b/c his spine was collapsing and he was in daily pain and his quality of life was diminishing rapidly.

He is very careful about not participating in anything that will do damage to his compromised spine, but if for some reason he breaks a rod, a screw become dislodged or he needs revision surgery in the future then so be it. If he has the most up to date surgical implants now, which are FAR superior than they were 25 years ago, just think how much more advanced they will be 25 years or less from now.

Comparing someone's scoliosis experience from 25 years ago to today, is like comparing apples to oranges.. no comparison whatsoever.

[TAMZTOM]

Hey Tom, I'm going to agree to disagree on some of those points and stand on the record.

Not only do I have no problem with that, Sharon, but I believe well intentioned and rational disagreement is productive, as I've always said to you. All else is idle nonsense. You know where I'm coming from. As I've also said often, it would be refreshing if many, many more would join such discussions. I have learned REAMS more from people who have had surgery than from those doing non-invasive stuff. We're getting a different side of the surgical perspective now, more grist for the mill. I am not in and will not be shoved into 'any camp' and want to learn from everyone.

The jury is out on #1...

In our case, we've taken a kid from 40 down to 25 (she's really less, but I'm high-balling it). Will that last for life? According to the scientific research and most of the noises from surgeons--including our own staggered surgeon--yes, it will. She's below the often quoted 30 degree threshold. That means little to me. I consider that she's not safe from progression despite her correction. I want her below 20 degree thoracic before I will even BEGIN to consider that she's safe from progression. (If we do this quickly, say before she's 12 or 13, she'll have remaining growth--a lot--and, according to the research suggesting 60% spontaneous correction of kids with growth remaining, will improve more. There will be nothing spontaneous about any further correction--Tamzin will exercise to correct regardless.

They need to be comparing it to not having surgery and in the fact of potentially worsening symptoms and even disastrous results like losing a lumbar that could have been saved had the patient not dilly-dallied trying various conservative modalities. For my daughters, one almost for sure and the other maybe would be dead without surgery.

You therefore had no choice but surgery. Plain and simple (but still not easy, emotionally).
Patients don't "dilly-dally" trying various conservative treatments. I've met parents and kids who have literally travelled globally, worked their goddamn asses off, trying to correct, and not succeeded. One in particular is now researching the various surgical alternatives. Gut wrenching for the family who really did try. But they were sucked in and mal-treated by the dispensers of some treatments. ALL treatments can improve, surgery and non-invasive methods. I hope they ALL do improve.

there is no proven conservative method.

There is no proven surgical method of acceptable treatment FOR LIFE. The jury is still out and will be out for the next 40 years on what the surgeons are trying now. Both camps are in the same boat and should up their game.

There is no doubt in my mind that if the kids who had surgery had the parents of those now pushing conservative methods, virtually all of them would have had surgery.

There is no doubt in my mind that if loads of those kids who had surgery had done what we and others are doing, they would not have had surgery until, at the earliest, they were in their 60s (age that is, not degrees of curve). Neither your opinion nor mine mean squat really. :-(

Many kids don't have a choice. They are just out of luck. Life is unfair.

I know and that sucks. It hits me in the gut. It has taken having a daughter mightily out of goddamn (carefully chosen expression) luck for me to really contemplate what all the parents with kids with this condition go through. I would kick many arses in all fields to get them justifying their pay grades...makes me angry....

[tae_tap]

" Originally Posted by TAMZTOM
I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier."


I am 34 and when I was 13 the doctor wanted to do surgery after bracing failed and my mother let me make the decision not to. Since I was 20 I have been in horrific pain, especially after giving birth to my four children.

I am almost two months post op and the pain now is so much better than and every day gets easier. The first couple of weeks I wondered if I made the right decision, but it was more about going withSSBOB instead of full fusion. Today I was able to cut my own toenail and there was no pain. I also drove 45 minutes to and from taking my son to meet his ride for wrestling practice and I have minimal pain. Next Thursday I start back to work half days and am excited because my pain now versus when I took off from work is so much lower.

In saying this, if I knew when I was a teenager of how serious the problem was and if my mom had stepped up and made the decision instead of letting a child make that decision I may have never lived so many years in pain. I am one who would say if technology was yesterday what it is today I wish I would've had the surgery done so much earlier.

Tamena

[TAMZTOM]

Thanks for sharing your experience. I've now heard from someone who wishes they'd had fusion earlier. I should have qualified my original comment to reflect that for people like yourself, in so much pain, surgery would have been the preferred option. I will endeavour to qualify my posts better in future.

Thanks...and I'm glad you're feeling better.

Regards

I am 34 and when I was 13 the doctor wanted to do surgery after bracing failed and my mother let me make the decision not to. Since I was 20 I have been in horrific pain, especially after giving birth to my four children.

I am almost two months post op and the pain now is so much better than and every day gets easier. The first couple of weeks I wondered if I made the right decision, but it was more about going withSSBOB instead of full fusion. Today I was able to cut my own toenail and there was no pain. I also drove 45 minutes to and from taking my son to meet his ride for wrestling practice and I have minimal pain. Next Thursday I start back to work half days and am excited because my pain now versus when I took off from work is so much lower.

In saying this, if I knew when I was a teenager of how serious the problem was and if my mom had stepped up and made the decision instead of letting a child make that decision I may have never lived so many years in pain. I am one who would say if technology was yesterday what it is today I wish I would've had the surgery done so much earlier.

Tamena

[Pooka1]

Thanks for sharing your experience. I've now heard from someone who wishes they'd had fusion earlier. I should have qualified my original comment to reflect that for people like yourself, in so much pain, surgery would have been the preferred option. I will endeavour to qualify my posts better in future.

No actually in at least some subsurgical and maybe in surgical curves, PT works pretty well for pain. I think it works better than surgery in certain cases, maybe lumbar and such. Linda might know.

In cases where people are subsurgical or are not progressing I think surgeons ask adults to try PT for pain before trying surgery for pain. That is my impression but Linda will correct me if I'm wrong.

This doesn't apply to large progressive T curves in kids as far as I know. Those are clear surgical cases where surgery is required to stop and correct progression irrespective of pain levels.

[Pooka1]

Patients don't "dilly-dally" trying various conservative treatments. I've met parents and kids who have literally travelled globally, worked their goddamn asses off, trying to correct, and not succeeded. One in particular is now researching the various surgical alternatives. Gut wrenching for the family who really did try. But they were sucked in and mal-treated by the dispensers of some treatments. ALL treatments can improve, surgery and non-invasive methods. I hope they ALL do improve.

Sorry I was unclear. I meant kids who are in surgical range and risk longer fusions, especially into the lumbar, from waiting.

I do not fault anyone for doing anything (or not doing anything) when they are in the subsurgical range.

[jrnyc]

hi Sharon
i personally see child/adolescent scoli as having such different issues
than adult scoli....whether the adult was diagnosed when in adulthood,
late in life, or they had scoli from teenage years and diagnosis was just
missed (which i think is my case)
thank goodness most kids seem to heal so quickly compared to adults...
it means that they hopefully do not lose much time being kids/young
adults....and hopefully in most cases, they are not restricted from very
many activities...
for adults, i think the decision can get harder the older one gets...
not that the decision is easy for parents and their children...i just
think it is more clear for kids when the curves are large and progressing
rapidly...
watching the kind of progression you describe in one of your daughters
sounds terrifying, frustrating, and ultimately like the need for surgery
became more clear the longer the months went on...

i have read several comments by adults who had good surgical outcomes
who said they wished they had the surgery sooner...

jess

[Cornerthree]

I keep reading on the web very sad and disturbing stories by young girls that have had the surgery and then later regretted it. And when I read the teenage section of this forum, all the teens talk about the surgery in the same way I did when I was their age...as though it's no big deal, as though it is an alternative to a brace. It should not be presented to patients as an alternative; it should be for severe, progressive cases that a brace WON'T fix. Very sad. I do not feel that these youth (or their parents) are being honestly informed about the surgery. And I still maintain that there is little long-term info on exactly how people fare as they get older with this surgery. For me, living with a fused spine at age 40 something feels very differently than living with it at 20.

[Pooka1]

I keep reading on the web very sad and disturbing stories by young girls that have had the surgery and then later regretted it.

How do you determine how representative these testimonials are compared to all the testimonials where kids gain their life back from the surgery like my two kids?

And when I read the teenage section of this forum, all the teens talk about the surgery in the same way I did when I was their age...as though it's no big deal, as though it is an alternative to a brace. It should not be presented to patients as an alternative; it should be for severe, progressive cases that a brace WON'T fix. Very sad.

Surgery is not an alternate to bracing and no experienced pediatric orthopedic surgeon would ever say so. The ranges don't overlap AT ALL. The bracing range is 25* - 40* (or 20* with demonstrated progression) and the surgical range is 50* and above (40s* with demonstrated progression).

By the way, braces don't "fix" curves. At best they halt progression and possibly only to the point of maturity. There is no evidence bracing has let anyone avoid surgery for life. Please look at the bracing literature which is an unfortunate train wreck.

I do not feel that these youth (or their parents) are being honestly informed about the surgery.

I'm not sure how you know this. I was fully informed for instance when pulling the trigger on surgery for my daughters. One and likely both would be dead by now absent surgery and both would have had their lives ruined absent surgery as a FACT. I call that informed.

And I still maintain that there is little long-term info on exactly how people fare as they get older with this surgery.

Some is known. And some is known about what happens if you withhold surgery in many cases. Normal is off the table. Surgery is a rational choice for cutting known losses.

For me, living with a fused spine at age 40 something feels very differently than living with it at 20.

I am sorry you are having problems now and I hope you think about investigating revision surgery. You have a fusion well into your lumbar (L4 I think you said) with old instrumentation. That makes TWO reasons why your surgery might not be expected to be stable your whole life. I am sorry if your surgeon didn't tell you this. Maybe it wasn't known then, I don't know. Fusions to L4 are known to require extensions in most people and H rods into the lumbar are known to cause flatback. Most kids have only a thoracic curve and there are studies at least 2 decades out showing these tend to be stable at least that long with the newer instrumentation. In fact T curve fusions can be stable even with H-rods as I understand it. It's the lumbar part that everyone struggles with because that has not been solved even today. It is a mercy that most kids do NOT have lumbar involvement... T curves dominate in terms of frequency.

I feel very bad for you because I think you might have been blind-sided by realizing your fusion would not be stable for life. But you need to realize NOBODY's fusion to L4 is stable for life, not even those being fused today. So the question is were you better off during those years of being fused compared to how you would have been without fusion? You had a large progressive thoracic curve. Would you even be able to walk now if you didn't halt the progression? Would you be able to breath unassisted? Do you really conclude you made the wrong choice?

These are the questions I faced in agreeing to fusion surgery for my daughters. One would likely be dead now anyway if she wasn't fused so sitting in a wheelchair and breathing at all, even on a vent, would be luxuries for her. Instead she leads a normal life... feels normal and looks normal. Huge win. And that is the norm which is why large T curves are fused. If it wasn't the norm then we wouldn't see so many surgeries or any surgeries.

[tae_tap]

If technology was like it is today when I was told I needed surgery at 13 after three years of bracing (which by the way did not fix my curves in any way) I would've opted for surgery then. I opted not to have surgery and lived 20 years in pain due to wanting to wait as l as I could because of being scared off by stories like these and thinking advancement in the field would happen over time.

So you can't say that these teens having surgery are going to fall into the same category as you when they are older or that bracing is the answer instead of surgery. I am an example of the other side of waiting, curves progressing, ending up with major pain, and having to stop life for recovery.

You have a right to share your story, but the scare tactic of putting what you think will happen down the road with other people is to okay. No one can see into the future for what is to come and having a positive attitude is important with support and overcoming the recovery from this surgery. I for o am thankful that this post was not here prior to my surgery in October because I would've been sick to my stomach with fear. So for those of you that are reading this and second guessing your decision or surgeon for fear of having a bad experience, you have to have faith and a positive mindset.

Tamena

[jrnyc]

Tamena, if you had the surgery 20 years ago, would that have
been Harrington rod surgery...?
i am asking because if it had been Harrington rods, there is no way
to know whether or not you would still have been living in pain after
the surgery...of course, there is no way to know what "might" have happened,
good or bad.
i am glad your results from surgery this year were good and that you are
pleased with the decision you made...

i have not had surgery...yet...though every top guy i've seen in the field
has told me they recommend that i do...to the sacrum.
i read corner's threads with interest, but am aware that the surgery that
took place in her case is not the same as what happens today...
i think...at least i hope...that others read it with the same awareness...
still, i am grateful for all points of view...including hers...and i
ache for her regrets...and her pain...i feel so bad for her, even as i am
aware that no one of us can know the "what if's..." of any life...
i do not even know the "what if..." answers to my own life....

jess...& Sparky

[tae_tap]

Tamena, if you had the surgery 20 years ago, would that have
been Harrington rod surgery...?
i am asking because if it had been Harrington rods, there is no way
to know whether or not you would still have been living in pain after
the surgery...of course, there is no way to know what "might" have happened,
good or bad.
i am glad your results from surgery this year were good and that you are
pleased with the decision you made...

i have not had surgery...yet...though every top guy i've seen in the field
has told me they recommend that i do...to the sacrum.
i read corner's threads with interest, but am aware that the surgery that
took place in her case is not the same as what happens today...
i think...at least i hope...that others read it with the same awareness...
still, i am grateful for all points of view...including hers...and i
ache for her regrets...and her pain...i feel so bad for her, even as i am
aware that no one of us can know the "what if's..." of any life...
i do not even know the "what if..." answers to my own life....

jess...& Sparky

Yes it would've been Harrington. My point too was that no one case can be looked as "this is going to happen to you". I have always wondered if I would have experienced the pain if my mother had made the decision for me to do surgery instead of allowing me to make that decision as a child. But, now I say no regrets. Anything we choose requires us to have faith and everything happens for a reason. The only thing that makes it easier to step out with blind faith is the support from those here on the forum, support at home, and faith in general. There is a difference between being the voice of reason and just flat out being scared. No surgery is a 100% guarantee and there is always a chance for revision (heck, my mom has had four hip replacements). I for one stepped out on faith with doing SSBOB and know there is a huge chance that I will require a revision later on, but if pain is the driving force behind seeking surgery and not a cosmetic reason then it is easier to step out on faith that it will work. I am just thankful for all the positive support and encouragement I have received from those on the forum.

You will come to your decision when the time is right for you. Everyone has "the final straw" and when the time is right you will know in your heart and gut.
Tamena

[jrnyc]

i hope your surgery gives you long term pain relief,
and i hope revision can be avoided in your case...
scares me that even with top surgeons, good hospitals, etc,
and following doctor orders to letter, it seems a little tiny bit
of luck can come into play...even in 2012...
else how to explain sometimes very different results from top surgeons
who have similar patients, similar presenting problems, situations, etc...

wishing all a less painful, pain free (hopefully) 2013

jess...& Sparky