Is surgery worth having?

[titaniumed]

When I was your age, I decided NOT to decide, and that was my decision.... You don’t have to come to terms with this right now, treat it like this very small icon off to the side on your desktop that you look at every so often. Live your life, and set your goals regardless. Your decision should be thought about carefully since you do have the time.....

I am glad that you are understanding some of the things that we are saying here.

This is turning out to be one of the better “decision making” threads on this forum....

Ed

[Stefandamos]

It should definitely be a very difficult decision. We don't yet know your risk profile, in the long-term. And, we don't know that waiting is a good or bad thing. Since you don't have a crystal ball, you have to decide if the rewards of a straighter spine and potential improvement in pain outweigh the risk of the surgery causing you to be worse off in either the short- or long-term.

If I had had a crystal ball when I had my original surgery 20+ years ago, I think I might not have had that surgery. I don't really have pain, but I hate that I've lost so much flexibility. I didn't lose all that much flexibility from the first surgery, but that surgery led to needing more surgery that significantly reduced my flexibility.

Good for you taking your time to make the decision. There's no rush.

--Linda

Do you ever question where you would be if you didn't have the surgery though?

In my case, my #1 concern is cosmetic appearance. I know that's dumb, but it's what bothers me the most. I have almost no pain and my curve isn't THAT bad. I do get random pain here and there but it's very manageable.

Technology is always changing and maybe this surgery will become much easier on the body. Or maybe disk regeneration will become possible so surgery is smarter to get. One thing I do know is that flexibility is diminished whether you get surgery or not.

[Lizardacres]

It's not dumb at all to care about how you look, especially at your age. Look at all the people who have cosmetic surgery - even teenagers. While the odds are good you would have a good outcome, there is no guarantee. There is even a lot of plastic surgery gone wrong out there. Like all decisions, you have to weigh the risks and benefits carefully, which I can see is what you are trying to do.

Nobody here can make this decision for you, we can only share our own experiences and then you have to decide what risks you are willing to take. And it is unknown what you might have to give up for this surgery and once done, you can't go back. I'm not trying to deter you, I was never in your shoes as I was not offered surgery at your age as my orthopod then was very conservative. And I'm really glad I didn't anyway because it would have been a Harrington rod which wasn't so great but the best they had then and reserved for severe cases. In a perfect world, I would have had this surgery about five years ago, but hindsight is always 20/20. I have no regrets, though. But I will say that at your age, the desire for a perfect body is probably at it's peak. As you age, you will not care as much about your imperfections and even embrace them.

[Stefandamos]

It's not dumb at all to care about how you look, especially at your age. Look at all the people who have cosmetic surgery - even teenagers. While the odds are good you would have a good outcome, there is no guarantee. There is even a lot of plastic surgery gone wrong out there. Like all decisions, you have to weigh the risks and benefits carefully, which I can see is what you are trying to do.

Nobody here can make this decision for you, we can only share our own experiences and then you have to decide what risks you are willing to take. And it is unknown what you might have to give up for this surgery and once done, you can't go back. I'm not trying to deter you, I was never in your shoes as I was not offered surgery at your age as my orthopod then was very conservative. And I'm really glad I didn't anyway because it would have been a Harrington rod which wasn't so great but the best they had then and reserved for severe cases. In a perfect world, I would have had this surgery about five years ago, but hindsight is always 20/20. I have no regrets, though. But I will say that at your age, the desire for a perfect body is probably at it's peak. As you age, you will not care as much about your imperfections and even embrace them.

At my age, maybe it isn't perceived as being dumb. The reality is that cosmetic appearance is not important at all. Only to the individual themselves.

Everytime I think about getting surgery I have thoughts on the appearance only. It's hard for me to think.about loss in mobility, potential risks of surgery, potential chronic pain, the change in lifestyle, etc. It's almost as if the cosmetic goal is blinding my decision making.

Overall, I have been putting a lot of thought into this. My friends make it seem like it's no big deal. My father is indifferent but my mother is in favor of it. My grandparents think I'm going to die or something. I'm getting a lot of mixed messages from people and that too is clouding my own judgement.

[Stefandamos]

When I was your age, I decided NOT to decide, and that was my decision.... You don’t have to come to terms with this right now, treat it like this very small icon off to the side on your desktop that you look at every so often. Live your life, and set your goals regardless. Your decision should be thought about carefully since you do have the time.....

I am glad that you are understanding some of the things that we are saying here.

This is turning out to be one of the better “decision making” threads on this forum....

Ed

The thing is, I DONT have time. No one does.

The older I get, the stiffer my spine becomes. The longer I wait, the more severe of a surgery I will have to get.

The decision needs to be made immediately. Just waiting for the sake of waiting is not a good idea. The choices are to wait for the future and until I'm in pain or to get the surgery now. Either way, putting off the decision can have negative effects.

I don't mean to sound combative. It just seems like you're putting this very lightly when time is definitely an issue.

[Lizardacres]

At my age, maybe it isn't perceived as being dumb. The reality is that cosmetic appearance is not important at all. Only to the individual themselves.

Everytime I think about getting surgery I have thoughts on the appearance only. It's hard for me to think.about loss in mobility, potential risks of surgery, potential chronic pain, the change in lifestyle, etc. It's almost as if the cosmetic goal is blinding my decision making.

Overall, I have been putting a lot of thought into this. My friends make it seem like it's no big deal. My father is indifferent but my mother is in favor of it. My grandparents think I'm going to die or something. I'm getting a lot of mixed messages from people and that too is clouding my own judgement.

I think you show really good insight here. The mixed messages you are getting reflect the uncertainty involved in this decision. See a couple of surgeons and go armed with all the questions you have. Interview THEM. When my husband had his hip replaced he interviewed 5 surgeons before making a decision and the outcome with that surgery is much more certain. You are making a decision that will affect the rest of your life here, it shouldn't be taken lightly. I think we are all trying to empower you to not be afraid to ask all the questions you have and try to help you think of the important questions.

[Pooka1]

The thing is, I DONT have time. No one does.

The older I get, the stiffer my spine becomes. The longer I wait, the more severe of a surgery I will have to get.

The decision needs to be made immediately. Just waiting for the sake of waiting is not a good idea. The choices are to wait for the future and until I'm in pain or to get the surgery now. Either way, putting off the decision can have negative effects.

I don't mean to sound combative. It just seems like you're putting this very lightly when time is definitely an issue.

It may not be the case that the longer you wait, the more severe surgery you will need. If your lumbar is structural now then there is no downside to waiting even decades. You will have your flexibility and will not pay a price for waiting in terms of a longer fusion (if that's what the surgeon says).

But if your lumbar is NOT structural, and if fusing your thorax now can save your lumbar, then there is a real HUGE downside to waiting. Only a surgeon can tell you.

You are working the problem very well.

[LindaRacine]

Do you ever question where you would be if you didn't have the surgery though?

Yes, all of the time. I work in a spine center and see dozens of deformity patients every week. I probably know better than most, the risks and benefits of surgery.

--Linda

[LindaRacine]

The thing is, I DONT have time. No one does.

The older I get, the stiffer my spine becomes. The longer I wait, the more severe of a surgery I will have to get.

The decision needs to be made immediately. Just waiting for the sake of waiting is not a good idea. The choices are to wait for the future and until I'm in pain or to get the surgery now. Either way, putting off the decision can have negative effects.

I don't mean to sound combative. It just seems like you're putting this very lightly when time is definitely an issue.

Pooka and Ed are right. You almost certainly have time. We see people in their 70's, 80's and even 90's every week, who have severe deformities, but who opt for much smaller surgeries. They're not correcting their scoliosis, but they are hopefully improving their pain. Some of these people end up needing additional surgery, but the majority go happily on their way.

If your curves get considerably worse, it can be a slightly more difficult surgery with an increased likelihood of complications. But, I hear surgeons say this all of the time... When you're talking about skeletally mature adults, waiting 5 or 10 years to have surgery has little to no affect on complications or patient reported outcomes.

Pooka gave you good advice. Talk to your surgeon about the risks of waiting.

--Linda

[LindaRacine]

http://www.healio.com/orthopedics/sp...aphic-outcomes

"Different age groups had different distributions of curve types, curve magnitude, and fusion levels, which can affect the outcomes regardless of the age factor. However, this study clarified several important characteristics of adult scoliosis, and we believe that useful conclusions can be drawn regarding its surgical indications and strategies: (1) pedicle screw construct can gain effective results for treatment of adult idiopathic scoliosis due to its perceived superior power of correction; (2) younger patients present for surgery for different reasons than older patients (progressive deformity or pain); and (3) pain improvement is a more reliable outcome in older patients than younger patients, although younger patients rarely have severe pain symptoms."

[Stefandamos]

Thank you all so much for the information and recommendations. This thread has been a HUGE gain for me in terms of making the right decision.

I am sorry if I have gotten argumentative in any way. This situation just frustrates me and I can over react at times.

I will be visiting a new doctor on the 28th and will ask questions then. However, they won't refer me to a surgeon right away so most of these questions will have to wait unfortunately.

If the lumbar curve is structural, I will most likely wait it out and get surgery much later in life. If it is compensatory though, I will be setting up an appointment as soon as I can and get the surgery done. Lets just hope for the best.

[Pooka1]

Thank you all so much for the information and recommendations. This thread has been a HUGE gain for me in terms of making the right decision.

I am sorry if I have gotten argumentative in any way. This situation just frustrates me and I can over react at times.

I will be visiting a new doctor on the 28th and will ask questions then. However, they won't refer me to a surgeon right away so most of these questions will have to wait unfortunately.

If the lumbar curve is structural, I will most likely wait it out and get surgery much later in life. If it is compensatory though, I will be setting up an appointment as soon as I can and get the surgery done. Lets just hope for the best.

If the surgeon tells you your lumbar is structural, ask him how he knows that. To my knowledge and maybe Linda can comment, the only way to know is with bending radiographs. If you didn't do bending radiographs, I am not sure the surgeon can know in your case.

Curves can look like double majors (structural T and L) but still only have one structural curve in the thorax. These are called false double majors and I think one of my daughters had this type of curve. Though some surgeons will just fuse both curves (if you can believe it), there are studies showing it is actually better to just fuse the thorax and that this is stable for at least 2 decades in some people with this type of curve. It's stable in my daughter who was fused in 2009.

Because your L curve is almost as big as your T curve, you absolutely need VERY tight proof that your L is structural as it may not be. Only the surgeon can tell you.

If your surgeon tells you your lumbar is not structural but he wants to fuse it anyway, I will dig up the papers showing that is not the way to go. They were small studies but who the hell would want their lumbar fused when it isn't structural and not likely to become structural as far as anyone knows? I continue to be shocked surgeons will fuse a non-structural lumbar in false doubles and grateful our surgeon did not do that to my daughter.

Keep asking questions! Get answers!

[Stefandamos]

If the surgeon tells you your lumbar is structural, ask him how he knows that. To my knowledge and maybe Linda can comment, the only way to know is with bending radiographs. If you didn't do bending radiographs, I am not sure the surgeon can know in your case.

Curves can look like double majors (structural T and L) but still only have one structural curve in the thorax. These are called false double majors and I think one of my daughters had this type of curve. Though some surgeons will just fuse both curves (if you can believe it), there are studies showing it is actually better to just fuse the thorax and that this is stable for at least 2 decades in some people with this type of curve. It's stable in my daughter who was fused in 2009.

Because your L curve is almost as big as your T curve, you absolutely need VERY tight proof that your L is structural as it may not be. Only the surgeon can tell you.

If your surgeon tells you your lumbar is not structural but he wants to fuse it anyway, I will dig up the papers showing that is not the way to go. They were small studies but who the hell would want their lumbar fused when it isn't structural and not likely to become structural as far as anyone knows? I continue to be shocked surgeons will fuse a non-structural lumbar in false doubles and grateful our surgeon did not do that to my daughter.

Keep asking questions! Get answers!

I'm definitely going to make sure I get solid evidence that my curve is what they say it is. Luckily I do have access to 2 different surgeons so that should definitely help out. When the L is as big as the T, does that mean that its likely compensatory?



Also, as a general update, I realized today that I can't sit/stand too long without having to shift around constantly. Not sure if this is new or if I just realized.

[Pooka1]

When the L is as big as the T, does that mean that its likely compensatory?

Ask the surgeon that question.

My general sense is that when the two curves are large and similar they tend to be both structural. That said we had a person on the forum with 2 large curves that were BOTH compensatory. She did not have a structural curve. She elected to have her thorax fused in the hope of preventing her lumbar from ever becoming structural IIRC. That seemed like a very unusual case! You can ask your surgeon who unusual that is if you are interested.

[lduran]

Take your time... and think about it!

Luckily I do have access to 2 different surgeons so that should definitely help out. When the L is as big as the T, does that mean that its likely compensatory?

Well, sharing my experience, I can tell you that I started treating my scoliosis at 13 years old. Waited until I was 39 to do the surgery. At that point, my spine had deteriorated very much and couldn't put it off much longer. Yes, you'll be a version of what you are today; however, hopefully a version with less pain (if you ever get to that pain point). Seeing two doctors is definitely highly recommended. I did that and ensured that both surgeons were recommending the same approach to the correction. I have a five level fusion and there is probably more to come on the future, but I'll think about that when the time comes. I thankfully didn't have any other complications before or post surgery, so I am one of the blessed ones here.
This board serves you a sounding board since many of us are either thinking about or gone ahead with the surgery. Every person and therefore outcome is different but at least you are making an educated decision and hoping for the best...that's all you can do. Loretta.