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Stefandamos
08-17-2015, 04:26 PM
Hi everyone. Long time reader but first time poster. My question goes out to those of you who have had scoliosis corrective surgery already.

A little bit of background:
I am 22 years old, currently working full-time and going to school full-time. I was diagnosed with scoliosis when I was 12 years old and had an 11° thoracic curvature. Now at my current age I currently have a double curvature of 43°T and 35°L. However, over the last year, my curve has not progressed and my doctor claims that it most likely won't.

As of right now I experience almost no pain and only minor discomfort. The thing that gets to me though is the cosmetic appearance of this condition. So my question is, is scoliosis surgery worth getting for mostly cosmetic appearances?

I understand a lot about the surgery and even have a couple friends who have been through it themselves. I play hockey and go to the gym often and understand that I would have to give those up for the most part.

All replies are appreciated!

Pooka1
08-17-2015, 07:41 PM
Hi everyone. Long time reader but first time poster. My question goes out to those of you who have had scoliosis corrective surgery already.

A little bit of background:
I am 22 years old, currently working full-time and going to school full-time. I was diagnosed with scoliosis when I was 12 years old and had an 11° thoracic curvature. Now at my current age I currently have a double curvature of 43°T and 35°L. However, over the last year, my curve has not progressed and my doctor claims that it most likely won't.

As of right now I experience almost no pain and only minor discomfort. The thing that gets to me though is the cosmetic appearance of this condition. So my question is, is scoliosis surgery worth getting for mostly cosmetic appearances?

I understand a lot about the surgery and even have a couple friends who have been through it themselves. I play hockey and go to the gym often and understand that I would have to give those up for the most part.

All replies are appreciated!

Hi there.

Although you are an adult, you are a very young adult. Based on the testimonials I've read here which may not be representative, my guess is you would recover as fast as a teenager which is to say a few weeks to a (very) few months.

Here are some questions I would be asking the surgeon if it was me:

1. Is the lumbar curve structural? You only started with a thoracic curve and now you have a sizable lumbar curve. If the lumbar is still compensatory, would fusing the thoracic potentially save the lumbar from getting structuralized and needing fusion in the future? If you can hope to avoid a lumbar fusion by fusing now, how far down would the fusion go?

2. The T curve progressed 32 degrees in 10 years. That is over 3 degrees a year. Do you know what it measured at the point of skeletal maturity? If most of that progression was before you were mature then that is one thing. If the curve tended to progress also after you were skeletally mature, that might be another thing irrespective if you have one year where the progression wasn't measurable.

3. I don't think insurance companies pay for purely cosmetic scoliosis fusion. But you are close to surgical range so you may have the option of getting fused at some point. I think they should pay for fusions that are below the surgical threshold specifically to save levels in the lumbar. At least one pediatric surgeon does this for example.

4. You should ask your surgeon about what you have to give up if you were fused. I seriously doubt you would have to give up going to the gym and I have to wonder if they would tell you to give up hockey. I doubt it. My daughters have no restrictions other than bungee jumping which apparently nobody should be doing, even those with healthy backs. Also, some surgeons don't place any physical restrictions even from day one after surgery. That's how good fusions can take in young people. That's why I doubt you will be restricted from the gym or hockey.

These are all questions I would ask the surgeon if you were my kid.

Good luck.

Stefandamos
08-17-2015, 10:40 PM
Hi there.

Although you are an adult, you are a very young adult. Based on the testimonials I've read here which may not be representative, my guess is you would recover as fast as a teenager which is to say a few weeks to a (very) few months.

Here are some questions I would be asking the surgeon if it was me:

1. Is the lumbar curve structural? You only started with a thoracic curve and now you have a sizable lumbar curve. If the lumbar is still compensatory, would fusing the thoracic potentially save the lumbar from getting structuralized and needing fusion in the future? If you can hope to avoid a lumbar fusion by fusing now, how far down would the fusion go?

2. The T curve progressed 32 degrees in 10 years. That is over 3 degrees a year. Do you know what it measured at the point of skeletal maturity? If most of that progression was before you were mature then that is one thing. If the curve tended to progress also after you were skeletally mature, that might be another thing irrespective if you have one year where the progression wasn't measurable.

3. I don't think insurance companies pay for purely cosmetic scoliosis fusion. But you are close to surgical range so you may have the option of getting fused at some point. I think they should pay for fusions that are below the surgical threshold specifically to save levels in the lumbar. At least one pediatric surgeon does this for example.

4. You should ask your surgeon about what you have to give up if you were fused. I seriously doubt you would have to give up going to the gym and I have to wonder if they would tell you to give up hockey. I doubt it. My daughters have no restrictions other than bungee jumping which apparently nobody should be doing, even those with healthy backs. Also, some surgeons don't place any physical restrictions even from day one after surgery. That's how good fusions can take in young people. That's why I doubt you will be restricted from the gym or hockey.

These are all questions I would ask the surgeon if you were my kid.

Good luck.


Thank you for the response! It definitely brings some light to my situation knowing that I may heal a bit faster. That was one of the biggest deciding factors for me. I can't stay out of work/school too long so if after 3-weeks I can start working again, I'd be content.

I will make sure to cover these points my surgeon to see if he can provide answers to my questions.

The surgeon I am going to is Dr. Skaggs at Children's Hospital Los Angeles and I have been told he is one of the best at what he does.

Again, thank you for your response!

Pooka1
08-18-2015, 05:57 AM
Thank you for the response! It definitely brings some light to my situation knowing that I may heal a bit faster. That was one of the biggest deciding factors for me. I can't stay out of work/school too long so if after 3-weeks I can start working again, I'd be content.

I will make sure to cover these points my surgeon to see if he can provide answers to my questions.

The surgeon I am going to is Dr. Skaggs at Children's Hospital Los Angeles and I have been told he is one of the best at what he does.

Again, thank you for your response!

My daughters had T fusions as teenagers and were back in school full time at around 3 weeks post op. They felt back to normal in a few months.

Here is a surgeon's blog about his patients. There are several posts about young people like yourself returning to sports, dance, etc. within weeks. Coincidentally, the first page has a few stories about people about your age. There are many others there.

http://www.drlloydhey.blogspot.com/

Pooka1
08-18-2015, 11:30 AM
By the way, I remembered a comment our surgeon made about physical restrictions and kids. He said about 95% of kids need no physical restrictions to get a good fusion. They can resume life as their pain and recovery permits, not according to any set schedule. It is only because they don't know who the 5% are who do need the restrictions to get a good fusion that he restricts all kids from certain activities for 8 months. I am guessing the surgeons who set no physical restrictions at any time are playing those very good odds.

Once again, you are a young adult and not a teenager. I suspect you will group with the teenagers on fusion aspects and recovery time lines as you are only 22 but you would have to specifically ask the surgeon about that.

Stefandamos
08-18-2015, 08:55 PM
My daughters had T fusions as teenagers and were back in school full time at around 3 weeks post op. They felt back to normal in a few months.

Here is a surgeon's blog about his patients. There are several posts about young people like yourself returning to sports, dance, etc. within weeks. Coincidentally, the first page has a few stories about people about your age. There are many others there.

http://www.drlloydhey.blogspot.com/

I've read through quite a bit of these testimonials/stories and I feel a lot better about getting the surgery. He seems to constantly stress about the important of catching it early on and I am hoping it is still early enough for me. I don't want to end up with a fusion through my entire lumbar spine as well due to the impairment on mobility that comes from it.

Thank you for sharing this with me.

Pooka1
08-19-2015, 05:34 AM
A top surgeon in this field stated that if you just need a T fusion that only goes to about T12 or L1 and the lumbar alignment is good, you will likely never need to fuse the lumbar. That is certainly what I am hoping for with my girls.

I understand this drive to avoid surgeon and people waiting and waiting to the last minute. But I also see much longer fusions in older people compared to younger ones. Yes they live longer without a fusion but then they lose their lumber.

I would ask the surgeon about that. Besides Dr. Hey, you don't hear much talk about that. I think it is just surgeons not wanting to buy trouble by operating below the threshold and I don't blame them. But at the same time patients may not be told enough to make a fully informed decision.

titaniumed
08-19-2015, 08:15 PM
Steph

I wanted to welcome you to the forum while sitting back at the table and letting Sharon lead the discussion about your future decision. Her research into the matter is years of data collection and thought from talking with surgeons, reading peer reviewed articles here, and from reading many posts and testimonials here on the forum. Of course, 2 surgeons can differ on methods, but its nice when they are in agreement. Its sort of like counting beans in a jar, if 2 counts are off, you have to count again. 2nd opinions are good things for piece of mind......and no surgeon should ever push us into surgery.

Around here at NSF we have a group of elder very experienced scoli’s so your decision to post and ask questions was very wise. Please do so if any other questions arise, there are many of us reading and following.

Please understand that there are pros and cons to our decision, and that we have to weigh all of these things out in our minds before submitting and setting our dates. Even though many of us have our surgeries and are very happy, there are those that are not happy for various reasons. Surgery can never be reversed so there is a 100% commitment that’s involved, for better of worse.....

Surgery years ago was usually thought of as a last ditch effort. Of course, years ago, 50 years ago, medically speaking we were in the stone age. And actually today, we are still in the stone age, “with better results”. I waited 34 years for my surgeries waiting for technology, and that worked well for me, its one thing to consider when leaning in the non-surgical direction. The pros of having surgery young are that you will heal quickly, (approx 3 months if everything goes well) and save the agony of living with pain for many years like myself and having to have to do a much harder surgery or set of surgeries.

I think that since you don’t have an emergency, that you should wait and think things over for a good period of time. This is not something you do to get done as if on a check list. Read and post here, read some books, become an educated scoli.

If you tell your surgeon that you are not ready to commit, that’s ok, they will understand. You can always set a date later. I spent 2-1/2 years talking with my surgeon.

If you decide to put if off, you will need to have that occasional x-ray to monitor your progression. Get your own copies of diagnostics burned to disc to keep in your possession, they are yours. They come in very handy down the road and surgeons like to see dated x-rays or MRI’s.

Ed

Stefandamos
08-19-2015, 09:00 PM
Steph

I wanted to welcome you to the forum while sitting back at the table and letting Sharon lead the discussion about your future decision. Her research into the matter is years of data collection and thought from talking with surgeons, reading peer reviewed articles here, and from reading many posts and testimonials here on the forum. Of course, 2 surgeons can differ on methods, but its nice when they are in agreement. Its sort of like counting beans in a jar, if 2 counts are off, you have to count again. 2nd opinions are good things for piece of mind......and no surgeon should ever push us into surgery.

Around here at NSF we have a group of elder very experienced scoli’s so your decision to post and ask questions was very wise. Please do so if any other questions arise, there are many of us reading and following.

Please understand that there are pros and cons to our decision, and that we have to weigh all of these things out in our minds before submitting and setting our dates. Even though many of us have our surgeries and are very happy, there are those that are not happy for various reasons. Surgery can never be reversed so there is a 100% commitment that’s involved, for better of worse.....

Surgery years ago was usually thought of as a last ditch effort. Of course, years ago, 50 years ago, medically speaking we were in the stone age. And actually today, we are still in the stone age, “with better results”. I waited 34 years for my surgeries waiting for technology, and that worked well for me, its one thing to consider when leaning in the non-surgical direction. The pros of having surgery young are that you will heal quickly, (approx 3 months if everything goes well) and save the agony of living with pain for many years like myself and having to have to do a much harder surgery or set of surgeries.

I think that since you don’t have an emergency, that you should wait and think things over for a good period of time. This is not something you do to get done as if on a check list. Read and post here, read some books, become an educated scoli.

If you tell your surgeon that you are not ready to commit, that’s ok, they will understand. You can always set a date later. I spent 2-1/2 years talking with my surgeon.

If you decide to put if off, you will need to have that occasional x-ray to monitor your progression. Get your own copies of diagnostics burned to disc to keep in your possession, they are yours. They come in very handy down the road and surgeons like to see dated x-rays or MRI’s.

Ed

I have definitely seen the wealth of information,over the years, that exists here from the frequent posters. I have researched scoliosis more than most people my age would. From peer-reviewed journals to talking to surgeons themselves. I am fortunate enough to be connected directly to surgeon I mentioned, Dr. Skaggs, and have had many opportunities to casually discuss this.

One thing I have personally come to the conclusion of as well is that there truly are pros and cons to waiting. I have waited 3 years already since surgery was initially mentioned and I have kept putting it off. I feel that if I wait any longer that I may compromise my lower vertebrae and I would prefer for that not to happen. The future of scoliosis treatment methods (not just surgery) are not entirely known right now.

Due to the lack of pain I experience, I don't have an emergency situation. You are correct with that statement. However, I went from not noticing my curve to always being uncomfortable and being able to feel the asymmetry in my spine. In addition to that, the appearance of it is something that really bothers me. I feel as if I spend 90% of my day trying to hide my curve and don't feel comfortable in my own skin.

I will definitely be putting more thought into this over the course of the next few weeks but I feel very prepared to go through with this surgery. I do understand it is a permanent decision that one can not reverse and that's the only part that makes me truly hesitant. I do know that there are more people happy about their surgery than not. Albeit anecdotally.

If you have any more input, I would definitely appreciate it!

susancook
08-19-2015, 09:52 PM
Steph: Welcome! My scoliosis and kyphosis occurred when I was in my early 60's, maybe 50's which is probably "old" to you [it is to me!], so I did not experience being a young adult with scoliosis. I remember being self-conscious as a young adult and I can only imagine how you must feel. You are open about your feelings on this forum which is great.

Sharon's comments seem right on. She speaks as a parent and as an informed well read researcher/consumer.

My thoughts on scoliosis surgery: Most surgery goes well and most people are happy and relatively pain free or pain free at some point postop. Almost everyone that has surgery imagines the "best case scenario". Most people have scoliosis surgery because of pain. While my kyphosis was ugly, I was in a lot of pain and had exhausted non-surgical options [injections, ablations, physical therapy, acupuncture]. There are also folks on the forum who have had surgery for large curves and no pain, but they are few.

Your surgeon said that he felt that your curve would not progress, so that is not an issue. While probably generally true, there are others on this forum who would say otherwise.

Does surgery now prevent future surgical necessity of extension of lumbar levels and possible limited mobility? Good question....I would ask a surgeon.

Best of luck in your decision making. I wish you well.

Susan

Stefandamos
08-19-2015, 11:52 PM
Steph: Welcome! My scoliosis and kyphosis occurred when I was in my early 60's, maybe 50's which is probably "old" to you [it is to me!], so I did not experience being a young adult with scoliosis. I remember being self-conscious as a young adult and I can only imagine how you must feel. You are open about your feelings on this forum which is great.

Sharon's comments seem right on. She speaks as a parent and as an informed well read researcher/consumer.

My thoughts on scoliosis surgery: Most surgery goes well and most people are happy and relatively pain free or pain free at some point postop. Almost everyone that has surgery imagines the "best case scenario". Most people have scoliosis surgery because of pain. While my kyphosis was ugly, I was in a lot of pain and had exhausted non-surgical options [injections, ablations, physical therapy, acupuncture]. There are also folks on the forum who have had surgery for large curves and no pain, but they are few.

Your surgeon said that he felt that your curve would not progress, so that is not an issue. While probably generally true, there are others on this forum who would say otherwise.

Does surgery now prevent future surgical necessity of extension of lumbar levels and possible limited mobility? Good question....I would ask a surgeon.

Best of luck in your decision making. I wish you well.

Susan

I have no kyphosis right now. My spine is completely straight when looking at me from the side. This also means I have no lordosis. However, your degrees are relatively close to mine even at that later age. I'm hoping to never letmine progress that far!

The psychological effects of this are pretty much the worst part for me. I model in the side to help pay my way through school and am constantly having to correct posture to not let it show in pictures. Overall, most people have no idea I even have scoliosis but it's something that I notice constantly.

I am okay with dealing with some degree of pain for the rest of my life. I am an extremely active person and would not imagine some pain ever stopping that. Of course the risk of being a chronic-pain patient is possible, but that possibility is minimal from my current understanding.

I hope to speak to another surgeon at my local hospital in the next 2 weeks (when I get new x-rays done) and get a second opinion. As of right now, I am definitely leanings towards moving forward with the operation.

Thank you so much for taking your time to reply!

Pooka1
08-20-2015, 05:46 AM
Stefan, I am very impressed by your thought process! It is obvious you have been researching and weighing your options.

I think you are missing a key piece of information... whether or not your lumbar curve is structural. If it is then you might do one thing. If it isn't then you might do another. Ask if they can do bending radiographs. That is how they determine these things.

Some other key pieces of info that I think you might be missing are the following:

1. If you were fused today, where would the fusion end? (Note that this can't be answered exactly without bending radiogrpahs as far as I know.. he needs to see which is the lowest vertebra you can level on bending)

2. Some surgeons will just fuse both curves if they are large. DO NOT accept this. Demand to know if the lumbar is structural.

3. Ask if fusion is even an option now or if you are below the threshold. I think surgeons have different thresholds. Dr. Hey, almost alone, seems to be focused on avoiding future damage and so might operate sooner.

My daughters have T4 to L1 fusions that they claim they don't notice much. That's because people don't generally bend much through that part of the back and because they probably didn't have a normal range of motion when they had the curves prior to surgery. They look completely normal because one was hyper-corrected to nearly straight and the other has small balanced residual curves.

I certainly have reason to hope that because their lumbars are much straighter, the load on the discs will be more even. And because the fusion was able to end at L1, that is why our surgeon told my daughter that her surgery is "one-stop shopping."

Here is a thread started by a guy only about 7 years older than you. There are several differing opinions that might interest you.

http://www.scoliosis.org/forum/showthread.php?14684-Connection-between-degenerative-disc-scoliosis-and-prior-idiopathic-scoliosis

Stefandamos
08-20-2015, 04:48 PM
Stefan, I am very impressed by your thought process! It is obvious you have been researching and weighing your options.

I think you are missing a key piece of information... whether or not your lumbar curve is structural. If it is then you might do one thing. If it isn't then you might do another. Ask if they can do bending radiographs. That is how they determine these things.

Some other key pieces of info that I think you might be missing are the following:

1. If you were fused today, where would the fusion end? (Note that this can't be answered exactly without bending radiogrpahs as far as I know.. he needs to see which is the lowest vertebra you can level on bending)

2. Some surgeons will just fuse both curves if they are large. DO NOT accept this. Demand to know if the lumbar is structural.

3. Ask if fusion is even an option now or if you are below the threshold. I think surgeons have different thresholds. Dr. Hey, almost alone, seems to be focused on avoiding future damage and so might operate sooner.

My daughters have T4 to L1 fusions that they claim they don't notice much. That's because people don't generally bend much through that part of the back and because they probably didn't have a normal range of motion when they had the curves prior to surgery. They look completely normal because one was hyper-corrected to nearly straight and the other has small balanced residual curves.

I certainly have reason to hope that because their lumbars are much straighter, the load on the discs will be more even. And because the fusion was able to end at L1, that is why our surgeon told my daughter that her surgery is "one-stop shopping."

Here is a thread started by a guy only about 7 years older than you. There are several differing opinions that might interest you.

http://www.scoliosis.org/forum/showthread.php?14684-Connection-between-degenerative-disc-scoliosis-and-prior-idiopathic-scoliosis

I just got the chance to read through that entire thread and realized a few things:
1. No one has to live with your choice but you. This is probably the scariest part of this entire thing. As of right now, I can play hockey, sit/stand indefinitely, hike an "infinite" distance, drop 20ft+ into water, cycle long distance, lift heavy weights etc. Its impossible to know whether or not I can return to all of these post-op.

2. Uncertainty is not an option. The "2-point test" that was posted proved I'm on the border, even in my own head. My surgeon did tell me that it was ultimately my choice, although he did recommend the surgery.

3. Waiting IS an option. The chances of a severe curve increase at my age are close to nothing. I could technically wait until I graduate from University to go through with this.

Where I am in my life right now seems like perfect timing to get the surgery. I have a great income that can support me even during a few months of not working, I have a dad and mom that can take off as much time as Id need and I could go through the majority of my healing process in a winter/summer session of school so I don't miss anything.

I recall my surgeon mentioning that even after a Thoracic fusion that I will have some imbalance left in my Lumbar region. This leads me to believe that both of my curve ARE structural and that the lumbar curve is not compensatory.

Would this increase my chance of a lower fusion in the future if the curve were to progress?

I'm torn between moving forward with this surgery or not. When I ask myself, "Why do you want this so badly?", the answer that comes to my head is for cosmetic reasons and comfort. It seems like that alone would not be a justification to go through with the surgery.

At times like this I wish I could have some sort of direction that told me which path would provide a happier lifestyle...

Pooka1
08-20-2015, 07:40 PM
I recall my surgeon mentioning that even after a Thoracic fusion that I will have some imbalance left in my Lumbar region. This leads me to believe that both of my curve ARE structural and that the lumbar curve is not compensatory.

If both your curves are structural then both would be fused in an adult. If he said you will have some curve left in your lumbar after fusion, it might mean you have the same type of curve one of my daughters had. He had to leave ~25* curve or else she would have a high left shoulder the rest of her life. The other one had a different type of T curve and she was hyper-corrected and has a pretty darn straight spine. In BOTH kids, the lumbar was compensatory as proven on bending radiographs. The kid with the residual lumbar curve bent her high 30 degree curve to single digits as I recall. Clearly compensatory.

They both had identical fusions in terms of length (T4-L1) on curves of nearly identical Cobb angle (high 50 degrees) of thoracic curves with compensatory lumbar curves but one was able to be hyper-corrected and the other wasn't.

titaniumed
08-21-2015, 12:50 AM
Steph, When you see your surgeon, also address your lack of kyphosis and lordosis. I would ask about restoration of these curves. Will he do anything special in regards to this like osteotomy? Your young, but ask.

Did he mention any fusion levels to you? or any other things like XLIF. Would it be a posterior only?

Where will the autograft come from? Or allograft? Will he harvest bone off your pelvis?

The scariest part for us is not knowing what is going to happen to us and when......We like to have direction and control, but that doesn’t always happen. I think to be happy, you want to swim with the tide, and go with the flow.

Ed

Pooka1
08-21-2015, 05:11 AM
EDITED

If a surgeon ever suggested to me that I or my kid needed bone taken from the iliac crest, I would ask them why, I would ask for evidence, I would ask about the risk of pain the rest of my life from that site, and then shop that opinion around with other surgeons.

titaniumed
08-21-2015, 07:08 PM
Do NOT allow bone to be taken from your iliac crest. I think surgeons are moving away from that because of the high chance of pain the rest of your life.

The word has to be getting out by now.....How long has it been? It has to be over 10 years now....

Ed

LindaRacine
08-21-2015, 09:39 PM
Surgeons are still using ICBG in some situations, for spine surgeries as well as other types of surgery. When they can't get enough local bone, and there is concern that the patient won't fuse, the risk of residual donor site pain is lesser than the risk of non-union.

--Linda

Pooka1
08-22-2015, 06:16 AM
Okay but I know a person who claims the ongoing pain associated with the bone harvest site is much worse than anything associated with her back. She traded one bad pain for another which may or may not make sense. It scared me and I still would not allow it in my kids if faced with that.

LindaRacine
08-22-2015, 11:42 AM
Okay but I know a person who claims the ongoing pain associated with the bone harvest site is much worse than anything associated with her back. She traded one bad pain for another which may or may not make sense. It scared me and I still would not allow it in my kids if faced with that.

As always, I would choose a surgeon I felt I could trust, and if the surgeon felt that I needed ICBG, I'd go along. :-)

Pooka1
08-22-2015, 05:05 PM
As always, I would choose a surgeon I felt I could trust, and if the surgeon felt that I needed ICBG, I'd go along. :-)

I guess I wouldn't trust a surgeon who recommended iliac crest bone harvest. :-) Or at least I would get 3-4 other opinions before accepting that. And I'd want to see ever paper every written on the subject. Twice. :-)

By the way, Linda, can I ask if any of the people you work with do ICBG? How many a year?

LindaRacine
08-22-2015, 05:21 PM
I guess I wouldn't trust a surgeon who recommended iliac crest bone harvest. :-) Or at least I would get 3-4 other opinions before accepting that. And I'd want to see ever paper every written on the subject. Twice. :-)

By the way, Linda, can I ask if any of the people you work with do ICBG? How many a year?

We don't actually track ICBG, as it's not a billable procedure (all systems and data are based on what's billable, unfortunately). I know I've seen it in notes occasionally, but I can't tell you how recent or how often. I'll try to track it for a bit.

I do agree, based on the literature, that no one should be routinely using ICBG (at least in the US). (We have to remember that there are places where there are no other options.) If there's a valid reason, and the patient is adequately informed, I think we need to be open minded about it. There's a bit of danger in warning a patient to never allow ICBG, or any other specific procedure for that matter, as we can't possibly know why the surgeon has recommended it. Instead, I think it's valid to suggest that the patient discuss the issue with their surgeon.

By the way, I had ICBG as part of my first surgeries, and have no pain at that site.

--Linda

Pooka1
08-22-2015, 05:29 PM
There's a bit of danger in warning a patient to never allow ICBG, or any other specific procedure for that matter, as we can't possibly know why the surgeon has recommended it. Instead, I think it's valid to suggest that the patient discuss the issue with their surgeon.

I agree with this. I am going to edit my post to make it about what I would do as opposed to suggesting what others should do. And that people should get reasons from their surgeons for these things and get other opinions.

titaniumed
08-22-2015, 10:19 PM
There sure are a lot of things to consider when making an “informed” decision.....We can pitch many balls across the plate for discussion and this forum is valuable in this respect.

Its not a scare tactic, its not lack of support, its reality....I want you to know that its “Shared Decision Making” which is a benefit.

Some videos from the “Informed Medical Decisions Foundation”

http://www.informedmedicaldecisions.org/patient-resources/

http://www.informedmedicaldecisions.org/what-is-shared-decision-making/

https://www.youtube.com/watch?v=rs8MyqHGkFM


Ed

Pooka1
08-23-2015, 06:06 AM
Those are good videos. As I understand it, they are trying to fully explain everything to the patients so the patients can partially own the decision.

Patients can't ask about the evidence case for pain at a bone harvest site if they don't know it is even an issue. Patients and parents can't push back on fusing compensatory lumbar curves in false doubles if they haven't seen the literature supporting selective T fusion and don't know that many surgeons do selective fusion.

You can't make an informed decision if you don't even know what to ask.

I am a lay person in the field of orthopedic medicine. But I can read the literature in this field enough to be able to ask a surgeon what exactly is being done and why. And I can get second opinions and ask each surgeon why other surgeons might differ among themselves on some point.

Most of all, patients should know that there isn't necessarily a consensus on many things involved with scoliosis. Just knowing that should trigger demands for a listing of what is not consensus-based and a full explanation of all procedures that are not consensus based. This also would show what is consensus-based (for example fusing large, progressive T curves in adolescents) so patients and parents don't have to struggle with things that don't merit the struggle.

susancook
08-23-2015, 09:12 PM
While we as patients want to know exactly what will be done surgically, there are always decisions that are made intra-operatively. Xrays, CT, and MRI can give the surgeon a good vision of what the vertebrae probably look like and how the vertebrae move, but the actual visualization and movement of the spine can result in the surgeon making some modifications during surgery. Of course this must be within the limits of the consent. This may be more valid during surgeries that repair problems from previous surgeries. This is why having an experienced surgeon is so important.
Susan

Lizardacres
08-24-2015, 04:20 PM
I agree with the 'never say never' approach. I had bone harvested from my iliac crest according to my operative report and if I had not requested a copy and read it, I would have never known. I have zero pain at the site. I don't remember it being discussed pre-op, but then again, there is a LOT I don't remember about the surgery. It may have been an operative decision as the #1 thing the surgeon told me after that I do remember is that my lumbar spine was 'mush', which he did not expect as my bone scan was deemed OK but not great (osteopenia), although they couldn't get a read on my lumbar spine during the scan due to the scoliosis. Maybe he decided it was something I needed for a solid fusion and was worth the risk. He is very conservative with BMP.

If you look at my post op xray, you can actually see where it was harvested.

Tableone
08-28-2015, 01:18 AM
Have you considered that this is an implant surgery, and that everyone takes to the metal implants in different ways? Waking up from surgery and feeling metal rods in your spine is a most unpleasant feeling. Not everyone feels it, but many do. Also, how do you feel about never being able to bend or arch your back again? Depending on how many levels are fused, you will be able to bend from the hips, and you will have some movement under your fusion in your lower lumbar, but you will never be able to wake up in the morning and yawn and stretch/arch your spine again. You said you did modeling - try your different model poses without bending your spine forward or backwards AT ALL. Also no twisting, unless it's ONLY your shoulders, no arching your spine, even a little, to accentuate your chest as this won't be possible with a Scoliosis fusion. I can't tell you how many times I look in clothing catalogs going through pose after pose and miss the days when I could move like that. When you sit, your back will be perfectly straight - no more hunching - a physical impossibility after surgery, so it might be hard to get comfortable on a couch. Do you like dancing? Get a brace and try dancing without arching your back or swaying your hips; fusing the spine also means you will lose the ability to walk while swinging your hips, something I believe models do a lot.
I wish you the best. Your curve numbers are low; wish I could trade places with you!

Stefandamos
08-28-2015, 05:03 AM
Steph, When you see your surgeon, also address your lack of kyphosis and lordosis. I would ask about restoration of these curves. Will he do anything special in regards to this like osteotomy? Your young, but ask.

Did he mention any fusion levels to you? or any other things like XLIF. Would it be a posterior only?

Where will the autograft come from? Or allograft? Will he harvest bone off your pelvis?

The scariest part for us is not knowing what is going to happen to us and when......We like to have direction and control, but that doesn’t always happen. I think to be happy, you want to swim with the tide, and go with the flow.

Ed

I will definitely be asking a TON of questions and will make sure to write all of these down ahead of time. Its definitely good to know what to ask ahead of time so I don't just go in blindly. Unfortunately, since my insurance changed, I have to wait to get my next set of xrays done to even talk to a surgeon. Even then, it will not be MY surgeon until the referral goes through.

Stefandamos
08-28-2015, 05:12 AM
Have you considered that this is an implant surgery, and that everyone takes to the metal implants in different ways? Waking up from surgery and feeling metal rods in your spine is a most unpleasant feeling. Not everyone feels it, but many do. Also, how do you feel about never being able to bend or arch your back again? Depending on how many levels are fused, you will be able to bend from the hips, and you will have some movement under your fusion in your lower lumbar, but you will never be able to wake up in the morning and yawn and stretch/arch your spine again. You said you did modeling - try your different model poses without bending your spine forward or backwards AT ALL. Also no twisting, unless it's ONLY your shoulders, no arching your spine, even a little, to accentuate your chest as this won't be possible with a Scoliosis fusion. I can't tell you how many times I look in clothing catalogs going through pose after pose and miss the days when I could move like that. When you sit, your back will be perfectly straight - no more hunching - a physical impossibility after surgery, so it might be hard to get comfortable on a couch. Do you like dancing? Get a brace and try dancing without arching your back or swaying your hips; fusing the spine also means you will lose the ability to walk while swinging your hips, something I believe models do a lot.
I wish you the best. Your curve numbers are low; wish I could trade places with you!

To my understanding, I would be able to do a LOT of those things still. A lot of modeling does consist of twisting and hunching over into "relaxed" positions, but I don't think I'd be entirely limited in that regards. My curvature is primarily in the thoracic region, which doesn't so a whole lot of bending/twisting anyways.

Im sure the feeling of having hardware on my spine will take some getting used to but there is a high possibility that it won't be unbearable. I understand there are sacrifices to be made. However, that's the card I have been dealt. I have scoliosis and nothing I do/say will change it. I am just going into this with an optimistic mindset and hoping for the best.

Also, I've talked to people that go back into dancing and sports post-op. Wouldn't imagine why I wouldn't be able to do 90% of what I do now, excluding Hockey.

I appreciate the post, even if it is a tad negative. It's great to see all perspectives though. Thank you for that!

Pooka1
08-28-2015, 06:46 AM
To my understanding, I would be able to do a LOT of those things still. A lot of modeling does consist of twisting and hunching over into "relaxed" positions, but I don't think I'd be entirely limited in that regards. My curvature is primarily in the thoracic region, which doesn't so a whole lot of bending/twisting anyways.

My kids have T4-L1 fused and they claim they don't notice a difference from before. But I think that is because they had a lower ROM just from having curved, rotated spines. They do not have the full ROM bending straight to the side but that is the only thing I can detect when asking them to move their torso. But the bottom line is they don't think fusion robbed them of much ROM.


Also, I've talked to people that go back into dancing and sports post-op. Wouldn't imagine why I wouldn't be able to do 90% of what I do now, excluding Hockey.

Ask your surgeon but I suspect you will have no restrictions (except bungee jumping), not even hockey. That's what my daughters were told as I recall. Could you please report back what he says on this for the sake of the others?

Stefandamos
08-28-2015, 01:08 PM
My kids have T4-L1 fused and they claim they don't notice a difference from before. But I think that is because they had a lower ROM just from having curved, rotated spines. They do not have the full ROM bending straight to the side but that is the only thing I can detect when asking them to move their torso. But the bottom line is they don't think fusion robbed them of much ROM.



Ask your surgeon but I suspect you will have no restrictions (except bungee jumping), not even hockey. That's what my daughters were told as I recall. Could you please report back what he says on this for the sake of the others?


I expect it to be similar for me. Having a curved and twisted spine does not give be me the best ROM. I can hardly twist my spine as is without crushing my heart/lungs to the point of severe pain. I do remember hearing that I won't be able to bend as far forward until I stretch morw after because most of the bending will be done at the hips.

Also, even if my surgeon gives the "okay" on hockey, I will still give it up. As much as I don't like saying it, hockey is not good for your body at all. At the end of every game my body aches and is screaming for me to stop. I could only imagine how that'd be on my body after the surgery.

I will make sure to post when I do speak to them though!
Its a learning experience for all of us.

Pooka1
08-28-2015, 01:54 PM
I do remember hearing that I won't be able to bend as far forward until I stretch more after because most of the bending will be done at the hips.

No that is only for lumbar fusions. My kids have something indistinguishable from full ROM bending forward because they are only fused to L1. If your fusion ends at L1 I suspect you will not notice much difference in how you bend forward.

Jinseeker
08-30-2015, 10:49 PM
Not trying to deter you away from your choice on having surgery, but I would want to notify you of the fact that you will have completely no capability of twisting the torso at all after a thoracic spinal fusion, ZERO. Most models I see on ads and tv have very dynamic poses that require them to twist the torso against the pelvis as much as possible to create a graceful arc in their pose. Also like tableone said, try fitting yourself with a brace first and see how happy you are being able to do all the sports activities you want and then make your final decision. I've been told exactly the same by my surgeon in evaluating whether I'd want to go through the operation or not.

For self motivating inspiration, I recommend you to check out Catliona Gray, she's an australian filipino fashion/ads model in the philippines despite her prominent scoliosis but still get's chosen often for the job. Often our insecurities stem only from our very own minds.

Godspeed to you with whatever choice you arrive with.

Stefandamos
08-31-2015, 01:30 AM
Not trying to deter you away from your choice on having surgery, but I would want to notify you of the fact that you will have completely no capability of twisting the torso at all after a thoracic spinal fusion, ZERO. Most models I see on ads and tv have very dynamic poses that require them to twist the torso against the pelvis as much as possible to create a graceful arc in their pose. Also like tableone said, try fitting yourself with a brace first and see how happy you are being able to do all the sports activities you want and then make your final decision. I've been told exactly the same by my surgeon in evaluating whether I'd want to go through the operation or not.

For self motivating inspiration, I recommend you to check out Catliona Gray, she's an australian filipino fashion/ads model in the philippines despite her prominent scoliosis but still get's chosen often for the job. Often our insecurities stem only from our very own minds.

Godspeed to you with whatever choice you arrive with.

I appreciate the post! I know surgery is nothing to jump into. I am aware of the mobility issues that come with it. However, to say that I will be 100% unable to twist my torso is false. Especially considering most of the movement of a spine comes from the lumbar region. The thoracic spine does give you extra mobility, but it's nothing like getting your lumbar spine fused

Also, continuing to model is the least of my concerns. I just want to be able to be active and continue studying without issues. I am going to school to be an engineerer, which won't require much activity at all.

From testimonials that I have personally heard from those that have had throacic fusions I've learned that ROM isn't compromised as much as you would think.

Im still on the fence myself but at the moment I see more pros than cons.

Pooka1
08-31-2015, 09:16 AM
Look at Ti Ed's pictures in his signature (I think)... he is fused to pelvis and can still twist through a large ROM with shoulders. I think he hit about 90*.

When I assessed my daughter's ROM after fusion, I don't recall if I asked them to twist. It was mainly checking ROM bending forward, backward, and to the sides. I will ask them if they can twist through the torso and ask them to take a picture.

Like I stated earlier, they claim they do not feel they have lost much ROM after the fusion though the baseline is their unfused curve. They do have less ROM bending to the side compared to someone without scoliosis and without a fusion. But they can bend forward and backward through the lumbar in what appears to me to be a normal ROM because they are only fused to L1.

Pooka1
08-31-2015, 09:20 AM
This is Ti Ed, one of the forum's spokesmodels :-)

He is doing a seated twist. His shoulders are displaced at least ~65* away from his hips I would say. That is QUITE a twist and he is fused to pelvis. Given that, I am guessing there is virtually NO loss in a twist ROM in a fusion that doesn't include the lumbar. That would comport with what my daughters report about general ROM pre- and post-fusion for them.

http://www.scoliosis.org/forum/attachment.php?attachmentid=619&d=1270157276

Stefandamos
08-31-2015, 02:16 PM
This is Ti Ed, one of the forum's spokesmodels :-)

He is doing a seated twist. His shoulders are displaced at least ~65* away from his hips I would say. That is QUITE a twist and he is fused to pelvis. Given that, I am guessing there is virtually NO loss in a twist ROM in a fusion that doesn't include the lumbar. That would comport with what my daughters report about general ROM pre- and post-fusion for them.

http://www.scoliosis.org/forum/attachment.php?attachmentid=619&d=1270157276

This is exactly what I thought! It seems the ROM isn't sacrificed as much as some people think. In this picture, his torso looks like it's twisting and not just his shoulders. Definitely not too concerned about my ROM post-op. I would gladly give up hockey and modeling for a straight spine and no more constant discomfort.

Irina
08-31-2015, 11:14 PM
Stephanie,

I am fused T6 to sacrum and I can do Zumba. It's a one hour class and I love it. I am not very graceful and probably dance like a Pinocchio, but I don't care. I am just having fun. Before the surgery, I could not walk for more than half an hour at a slow pace. Now, I am doing zumba for an hour in addition to swimming, lifting, elliptical etc four times a week.

And regarding modeling. I remember looking at catalogs and thinking that I would give anything, other than my loved ones, to be able to wear these outfits.I have never even though about models poses and how twisty they are. Now, people at work call me their fashion model because I've gone nuts after the surgery with clothing!

There are some very unlucky people and my heart goes out to them. As long as you understand risks involved and not going into this surgery for cosmetic reasons only, you should be ok. Best of luck with your decision!

Jinseeker
09-01-2015, 12:17 AM
I appreciate the post! I know surgery is nothing to jump into. I am aware of the mobility issues that come with it. However, to say that I will be 100% unable to twist my torso is false. Especially considering most of the movement of a spine comes from the lumbar region. The thoracic spine does give you extra mobility, but it's nothing like getting your lumbar spine fused

Also, continuing to model is the least of my concerns. I just want to be able to be active and continue studying without issues. I am going to school to be an engineerer, which won't require much activity at all.

From testimonials that I have personally heard from those that have had throacic fusions I've learned that ROM isn't compromised as much as you would think.

Im still on the fence myself but at the moment I see more pros than cons.

I was only referring to the fused part of the spine. That cannot twist as the vertebrae have joined into one bone. With professional models they twist all areas of the body, shoulders, neck, torso, and pelvis in a very natural unconstrained way, you won't have any motion in the torso area at all post op.

As for pain relief, have you tried schroth, developing your core and using a lumbar or rib support belt. It sure helped a lot with the constant discomfort
I was having, as I realized my spine is straighter when I bend my torso to the right and elevate my left shoulder higher a bit. This is what sitting straight is for me, NOT sitting with your shoulders level like everybody else. You have a lumbar curve, and those usually come with the pelvis tilted one side higher than the other, I sit with a small pillow underneath one butt to level my pelvis and definitely helped me the times I felt uneasy. It took me 7 years to finally know how to sit comfortably in a chair with my scoliotic body by fully understanding how it curves and twists. See, http://scoliosis3dc.com/schroth-method/best-practice-of-germany/
this helped me a lot in understanding how I should sit, move and stand.

Hope you explore other options, if you choose to live with your scoliosis, be open and let people know you have it and have to sit, stand walk in a different way, they'll understand.

green m&m
09-01-2015, 08:45 AM
Truthfully there's very little movement in the thoracic spine anyway once we are adults so fusion only in the thoracics and into higher lumbar levels won't change ROM too much once you are fully fused.

There is mental factor to get over to bend/twist more.

Anyway I'm fused to L3 and I don't really notice loss of ROM in the lumbar region, and only thing I can say I lost in the thoracic region for sure is the ability to slouch over, which probably is a good thing anyway.

Stefandamos
09-01-2015, 01:10 PM
I was only referring to the fused part of the spine. That cannot twist as the vertebrae have joined into one bone. With professional models they twist all areas of the body, shoulders, neck, torso, and pelvis in a very natural unconstrained way, you won't have any motion in the torso area at all post op.

As for pain relief, have you tried schroth, developing your core and using a lumbar or rib support belt. It sure helped a lot with the constant discomfort
I was having, as I realized my spine is straighter when I bend my torso to the right and elevate my left shoulder higher a bit. This is what sitting straight is for me, NOT sitting with your shoulders level like everybody else. You have a lumbar curve, and those usually come with the pelvis tilted one side higher than the other, I sit with a small pillow underneath one butt to level my pelvis and definitely helped me the times I felt uneasy. It took me 7 years to finally know how to sit comfortably in a chair with my scoliotic body by fully understanding how it curves and twists. See, http://scoliosis3dc.com/schroth-method/best-practice-of-germany/
this helped me a lot in understanding how I should sit, move and stand.

Hope you explore other options, if you choose to live with your scoliosis, be open and let people know you have it and have to sit, stand walk in a different way, they'll understand.

Living life with a scoliotic spine is not easy for anyone. However, I'd much rather straighten myself with surgery than constantly have to fix posture and worry about my appearance. My close friends know about it but that is it.

As a 22 year-old male, I put appearance high on a 'scale of important'. That's the reality of things. I already work out a few times a week and play hockey. Building muscle has helped but not as much as most would think. I constantly feel my spine, the same way you'd feel a ball in your hand if you were to hold one. It feels unnatural and I'm tired of it.

Pooka1
09-01-2015, 01:58 PM
Living life with a scoliotic spine is not easy for anyone. However, I'd much rather straighten myself with surgery than constantly have to fix posture and worry about my appearance. My close friends know about it but that is it.

As a 22 year-old male, I put appearance high on a 'scale of important'. That's the reality of things. I already work out a few times a week and play hockey. Building muscle has helped but not as much as most would think. I constantly feel my spine, the same way you'd feel a ball in your hand if you were to hold one. It feels unnatural and I'm tired of it.

My daughters were fused in 2008 and 2009 and claim to not think about their backs any more. It is the new normal. They look and feel normal (against an abnormal baseline of a curved back of course).

Stefandamos
09-01-2015, 03:42 PM
My daughters were fused in 2008 and 2009 and claim to not think about their backs any more. It is the new normal. They look and feel normal (against an abnormal baseline of a curved back of course).

That is exactly what I want for myself. My back will never be 100% symmetrical, but I know it can be improved significantly. I'm glad that even 6/7 years later they are still doing good and do not have to worry about their backs anymore! That's the outcome most people going through this surgery are looking for.

Not having to "feel" my spine is reason enough to get the surgery.

Stefandamos
09-05-2015, 03:04 PM
Went in for x-rays yesterday and had a very scary reminder. In 2009, I had one thoracic curve of 10 degrees. In 6 years time I have developed a 45~ degree Thoracic curve and a 32~ degree lumbar curve.

I will be getting the results of my x-rays on my next appointment on the 28th. Will keep everyone updated as to what the doctor says about surgery. Since I'm at a new hospital, they refuse to refer me directly to the neurosurgeon. For now, it's a waiting game.

Pooka1
09-05-2015, 05:06 PM
Went in for x-rays yesterday and had a very scary reminder. In 2009, I had one thoracic curve of 10 degrees. In 6 years time I have developed a 45~ degree Thoracic curve and a 32~ degree lumbar curve.

I will be getting the results of my x-rays on my next appointment on the 28th. Will keep everyone updated as to what the doctor says about surgery. Since I'm at a new hospital, they refuse to refer me directly to the neurosurgeon. For now, it's a waiting game.

That's very good that you have a new set of radiographs.

I am just curious why you chose a neurosurgeon instead of an orthopedic surgeon? I know neurosurgeons do spinal fusions but I assume orthopedic surgeons do more of them and therefore probably have more experience.

Is it possible for you to get the radiographs on a disk for your records? It is good if you have a record of your curve in case you move or change doctors.

I have all the radiographs for my daughters on disks and they come with a short radiologist report about the measurements. The measurements often disagreed with the surgeon's measurements which was interesting.

Good luck, Stefan.

susancook
09-07-2015, 11:57 AM
Looks like you were correct about the dramatic change in your thoracic curve. Yes, there is a waiting game for elective spinal surgery. For those waiting that are in great pain, it can be torture. But, I think that it gives you time to think about your decision and to be certain that it is the correct decision.

Meanwhile, read a lot! Did you purchase the book on scoliosis surgery?

Are you married or partnered? If so, what does your partner think about your thoracic curve and possible surgery? Do you live with anyone that can help you after your surgery? Where do you live?

Take care. Susan

Stefandamos
09-07-2015, 06:05 PM
That's very good that you have a new set of radiographs.

I am just curious why you chose a neurosurgeon instead of an orthopedic surgeon? I know neurosurgeons do spinal fusions but I assume orthopedic surgeons do more of them and therefore probably have more experience.

Is it possible for you to get the radiographs on a disk for your records? It is good if you have a record of your curve in case you move or change doctors.

I have all the radiographs for my daughters on disks and they come with a short radiologist report about the measurements. The measurements often disagreed with the surgeon's measurements which was interesting.

Good luck, Stefan.

I didn't make that choice. It's what my general doctor referred me to. I am hoping to get a referral back my ortho because he knew A-Z about scoliosis whereas these people seem to be clueless.

I am getting a copy of the radiographs when I go in for my next appointment. They will also have a copy of my old ones for my own sake.

Stefandamos
09-07-2015, 06:10 PM
Looks like you were correct about the dramatic change in your thoracic curve. Yes, there is a waiting game for elective spinal surgery. For those waiting that are in great pain, it can be torture. But, I think that it gives you time to think about your decision and to be certain that it is the correct decision.

Meanwhile, read a lot! Did you purchase the book on scoliosis surgery?

Are you married or partnered? If so, what does your partner think about your thoracic curve and possible surgery? Do you live with anyone that can help you after your surgery? Where do you live?

Take care. Susan

I feel very fortunate to not be in severe pain but I definitely feel like my condition is steadily worsening. I am continuing to think about but it has been putting a great deal of stress on me. It's on my mind 24/7, to the point where I'm having dreams about recovery.

I did not purchase the book because of my current financial situation. Still figuring out how to pay for school supplies for the classes I already have.

I am not married but I do have a significant other who I see very often. My partner knows I have scoliosis but she said she can't even tell and doesn't have much of an input into the surgery. Anytime I discuss this with people they tend to give the same response, "You'll be okay".

I currently live in a guest house at my grandparent's house and they would definitely be assisting. My mother, father, aunt, uncle, sister and bestfriends have all stated they'd be there for me 100%. Including financially. So I'm not too concerned about that. I live in Los Angeles though and everyrhing is incredibly accessible to me.

titaniumed
09-08-2015, 12:41 AM
Anytime I discuss this with people they tend to give the same response, "You'll be okay".

They are right you know.....

Don’t let this take over your mind...... If you didn’t have a surgical choice in the matter, it would be a different situation. If you have no choice but acceptance, then you accept.

You do have time.....and maybe some day you will have surgery, it could be years from now, so stressing over it “now” just isn’t worth it. Better off to delay that stress to a later date. I waited 34 years and had a ton of fun. Some patients pop in here with jaw dropping (100 degree plus) curves, the exact opposite, mainly because they didn’t know or were misinformed.

Your selection for your initial surgery is extremely important.....The surgeon YOU hire, not the surgeon your GP selects should be one who has trained through the main scoliosis training centers. They hang at UCSF, HSS, TCSC, and in St Louis.....usually at the coffee pot. (scoliosis forum joke) You can look at their CV’s on their web pages. SRS docs are nice, but not a necessary thing....

If you don’t have pain now, you will learn about surgical pain in an abrupt sort of manner. I could imagine that would be quite a shocking thing and if avoidable, that would be best. Nobody wishes pain, but for scolis that live and have major pain for sometime have the advantage since they are used to it, and any improvement through surgery is a bonus.

I would highly suggest getting a 2nd opinion before setting any dates. Go and visit Dr Pashman and see what he says.

For his take on using anyone but a scoliosis surgeon, please read this link

“Little skill is necessary to produce a spinal fusion. Significant skill is necessary to recreate spinal balance”
http://espine.com/why-a-spine-surgeon/

Ed

LindaRacine
09-08-2015, 10:39 PM
Back to the iliac crest bone graft debate...

http://www.beckersspine.com/spine/item/27054-5-key-notes-on-spinal-fusion-material-for-scoliosis-correction.html

titaniumed
09-09-2015, 12:06 AM
Where were we? I think Sharon was referring to lingering pain from ICBG in which there is plenty of material about this....depends on the study and depends on what timeframe.....

One thing is for sure, it involves extra surgery which weighs heavily......

On the subject of extra surgery, I do have irritation from my ALIF incision at my waist line and don’t wear belts anymore......I am past 7 years, and not a pain issue really, but something to consider since it was a change I didn’t expect. It might seem like a little thing, but these little things do add up and have to be considered in the decision making process. Clothing laying over scar tissue “can” be an issue.

I donated thousands in clothing after my surgeries because of changes from scoliosis surgery. My waist increased by 2 inches immediately so ALL my pants didn’t fit. All my shirts now are ones that hang over the waist and not tucked in. All my belts didn’t fit.

I don’t think I have ever mentioned this here.....

Ed

Pooka1
09-09-2015, 05:37 AM
I am shocked they are using iliac crest bone on children. They have their whole life ahead of them and they don't tend to be osteoporotic.

I dodged bullets with my kids that I didn't even know I was dodging. This sort of thing can keep you up at night if you are not careful. Parents like myself come into this in such a clueless state it is scary, expecially in hindsight.

leahdragonfly
09-09-2015, 11:21 AM
I had iliac crest bone harvested and used in 1984 during my L4-S1 fusion for spondylolisthesis. I was 17 years old and we were given no option, but that was a long time ago.

I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

Pooka1
09-09-2015, 06:37 PM
I had iliac crest bone harvested and used in 1984 during my L4-S1 fusion for spondylolisthesis. I was 17 years old and we were given no option, but that was a long time ago.

I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

Thanks for mentioning that, Gayle. I am so happy you don't have pain at the harvest site. I am just reacting to an online friend who said her ongoing pain at the harvest site for years was worse than the pain from her back before fusion.

I hope this next surgery is your last. You really deserve to catch a break.

LindaRacine
09-09-2015, 10:56 PM
Thanks for mentioning that, Gayle. I am so happy you don't have pain at the harvest site. I am just reacting to an online friend who said her ongoing pain at the harvest site for years was worse than the pain from her back before fusion.

I hope this next surgery is your last. You really deserve to catch a break.

Good question Gayle. If I had guessed, I think I would have said that it doesn't grow back, but I just pulled up my xrays and it looks like mine at least partially grew back.

1779

The graft was taken from my right side (the side opposite the iliac screw).

I'll try to remember to ask some of the docs.

--Linda

titaniumed
09-10-2015, 04:55 AM
I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

Gayle, Here is a little something about posterior “iliac crest regeneration” on a 70 year old......Restoration is possible, histological analysis showed mature bone at 18 months.
https://www.hss.edu/professional-conditions_hss-journal-spontaneous-posterior-iliac-crest-regeneration-enabling-second-bone-graft-harvest.asp

The grafting subject is an interesting subject.....many sites are used throughout the body for different reasons. The quest for alternative grafting materials wouldn’t have happened if everything ran smooth all the time.....

I think that maxillofacial skull and head reconstruction and grafting off the skull (cranial grafting) would have me a bit concerned to say the least. In France, they rebuilt Princess Diana’s driver’s skull after the crash under that bridge.....This is about as serious as it gets.

I almost want to say that I would do scoliosis surgery any day.....but its not that simple.

To have our surgeons when we need them is a gift, and my appreciation leaves me speechless. Christmas gifts come once a year, not everyday.

Ed

Stefandamos
09-10-2015, 03:42 PM
They are right you know.....

Don’t let this take over your mind...... If you didn’t have a surgical choice in the matter, it would be a different situation. If you have no choice but acceptance, then you accept.

You do have time.....and maybe some day you will have surgery, it could be years from now, so stressing over it “now” just isn’t worth it. Better off to delay that stress to a later date. I waited 34 years and had a ton of fun. Some patients pop in here with jaw dropping (100 degree plus) curves, the exact opposite, mainly because they didn’t know or were misinformed.

Your selection for your initial surgery is extremely important.....The surgeon YOU hire, not the surgeon your GP selects should be one who has trained through the main scoliosis training centers. They hang at UCSF, HSS, TCSC, and in St Louis.....usually at the coffee pot. (scoliosis forum joke) You can look at their CV’s on their web pages. SRS docs are nice, but not a necessary thing....

If you don’t have pain now, you will learn about surgical pain in an abrupt sort of manner. I could imagine that would be quite a shocking thing and if avoidable, that would be best. Nobody wishes pain, but for scolis that live and have major pain for sometime have the advantage since they are used to it, and any improvement through surgery is a bonus.

I would highly suggest getting a 2nd opinion before setting any dates. Go and visit Dr Pashman and see what he says.

For his take on using anyone but a scoliosis surgeon, please read this link

“Little skill is necessary to produce a spinal fusion. Significant skill is necessary to recreate spinal balance”
http://espine.com/why-a-spine-surgeon/

Ed

I've put the effort towards not stressing about it but it's very difficult. I'm torn between waiting or just going for it. I would love to not worry about the physical appearance of my back and be able to actually go to the beach or sit in a chair without feeling out of place.

On the other hand, the surgery could potentially put me in pain for life or at least increase my chances of severe pain later in life. I'm at the point where my last surgeon put the decision in my hands. Sometimes I wish it was more severe so that I didn't have the option to wait for the surgery.

I am not limited in any way to the activities that I can do. Sitting/standing too long is the only thing really. However, after the surgery I'll have a ton of limitations.

Still can't decise...

Pooka1
09-10-2015, 07:21 PM
However, after the surgery I'll have a ton of limitations.

Again, please ask your surgeon. You may have almost no limitations like my daughters.

LindaRacine
09-10-2015, 09:38 PM
I've put the effort towards not stressing about it but it's very difficult. I'm torn between waiting or just going for it. I would love to not worry about the physical appearance of my back and be able to actually go to the beach or sit in a chair without feeling out of place.

On the other hand, the surgery could potentially put me in pain for life or at least increase my chances of severe pain later in life. I'm at the point where my last surgeon put the decision in my hands. Sometimes I wish it was more severe so that I didn't have the option to wait for the surgery.

I am not limited in any way to the activities that I can do. Sitting/standing too long is the only thing really. However, after the surgery I'll have a ton of limitations.

Still can't decise...

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

titaniumed
09-11-2015, 01:25 AM
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
09-11-2015, 02:49 AM
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
09-11-2015, 12:43 PM
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
09-11-2015, 12:51 PM
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
09-11-2015, 12:56 PM
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
09-11-2015, 04:33 PM
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
09-11-2015, 04:48 PM
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
09-11-2015, 10:35 PM
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
09-11-2015, 10:53 PM
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
09-12-2015, 12:34 AM
http://www.healio.com/orthopedics/spine/journals/ortho/2011-3-34-3/%7Bc7315308-0e74-4438-8e96-f900b8364332%7D/surgical-treatment-of-adult-idiopathic-scoliosis-long-term-clinical-radiographic-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
09-12-2015, 01:58 AM
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
09-12-2015, 09:33 AM
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
09-14-2015, 11:43 PM
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
09-15-2015, 06:58 AM
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
09-21-2015, 08:29 AM
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.

Stefandamos
09-21-2015, 04:33 PM
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.

Thank you very much for the response!

Do you feel your spine deteriorated due to the bending/twisting of the spine causing uneven pressure on your vertebrae?

Are you happy with waiting to have done or the surgery at that age or, in hindsight, would you have gotten it done sooner?

The more I think about it, the more I feel like getting it done sooner. It seems most people wait until pain is unbearable to go through with the surgery. That is not a route I want to go down. However, it's not often you see people without pain 10+ years after surgery.

Decisions, decisions....

Pooka1
09-21-2015, 08:01 PM
THowever, it's not often you see people without pain 10+ years after surgery.

I think it is OFTEN the case that adolescents and perhaps young adults like yourself have no pain 10+ years after fusion.

Ask your surgeon if you are more likely to group with the adolescents or the older adults in terms of your outcome pain-wise. My kids were fused in 2008 and 2009 and while they tweak their backs like other people they certainly do not have any regular pain. And I doubt they will given what the surgeon said.

You also have to sort the people whose fusions end above the lumbar versus those whose end in the lumbar.

LindaRacine
09-23-2015, 09:32 AM
I haven't had a chance to reread this thread to see if I can figure out what type of curve the OP has, but I came across a very interesting article in Spine titled Which Lenke 1A Curves Are at the Greatest Risk for Adding-On... and Why? Stefan, if you have access to a medical library, you might want to check it out.

Spine (Phila Pa 1976). 2012 Jul 15;37(16):1384-90. doi: 10.1097/BRS.0b013e31824bac7a.
Which Lenke 1A curves are at the greatest risk for adding-on... and why?
Cho RH1, Yaszay B, Bartley CE, Bastrom TP, Newton PO.
Author information
Abstract
STUDY DESIGN:
Multicenter review of prospectively collected data.
OBJECTIVE:
The purpose of this study was to evaluate the incidence of distal adding-on and associated risk factors in each of the 2 Lenke 1A curve patterns.
SUMMARY OF BACKGROUND DATA:
Previous work has demonstrated 2 distinct Lenke 1A curve patterns on the basis of the tilt of L4 (1A-L and 1A-R) that are different in form and treatment.
METHODS:
A query of a prospective multicenter adolescent idiopathic scoliosis database identified 195 patients with Lenke 1A curves. Patients were grouped on the basis of the direction of the L4 vertebral tilt: 1A-L (left) and 1A-R (right). The incidences as well as clinical and radiographical risk factors for adding-on were identified for each group. Adding-on was defined as an increase in the Cobb angle of at least 5° and distalization of the end vertebra of the thoracic curve or a change in disc angulation of 5° or greater below the lowest instrumented vertebra from the first erect to 2-year postoperative radiographs.
RESULTS:
Forty (21%) patients met the criteria for adding-on. The average increase in Cobb angle was 11.9° for those categorized as having adding-on compared with 3.8° in the non-adding-on group. Lenke 1A-R curves were 2.2 times more likely to experience adding-on than 1A-L curves. In the 1A-R curves, patients who added-on were fused at an average of 1.6 levels proximal to the neutral vertebra versus an average of 0.9 levels proximal to the neutral vertebra for the patients who did not add-on (P = 0.023). Patients who added-on were fused at an average of 2.5 levels above stable versus 2.1 levels above stable in those who did not (P = 0.06). Age and skeletal maturity were not identified as risk factors in the 1A-R curves. In 1A-L curves, younger (12.7 vs. 14.7 yr, P = 0.002) and less skeletally mature patients based on Risser grading (70% vs. 14% Risser 0, P = 0.004) were more likely to experience adding-on.
CONCLUSION:
Understanding the difference between Lenke 1A-L and 1A-R curve types may be helpful in preventing the adding-on phenomena postoperatively. To prevent adding-on in 1A-R curves, we recommend fusing distally to 1 level above the neutral vertebra or 1 to 2 levels above the stable vertebra. In 1A-L curves, adding-on may simply be a need to balance some lumbar curve progression in a young, skeletally immature patient.

Jinseeker
10-05-2015, 09:57 AM
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

I like how this thread is going when coming up with making the right decision despite how hard it is to make.
I have a 45+ deg curve myself, but so far it has not worsen in 10 yrs since skeletal maturity, but I understand it may still worsen at some point.
I was surprised to hear Linda say that she'd not have her initial surgery if she'd known she were to have less flexibility. So I ask, if you didn't have it, you'd still be living with a progressive curve today, how could you come with the conclusion that would be better? Would you think you'd have healthier lumbar discs if you had not at your age?

Pooka1
10-05-2015, 10:38 AM
I think the only situation where the weight of medical opinion is clearly towards fusion (or tethering now maybe) is a progressive THORACIC curve over 50* in a growing adolescent.

The rest is up for grabs and the patient has to figure it out as far as I know.

3sisters
10-05-2015, 05:12 PM
One option that hasn't been mentioned yet, besides fusion and waiting/ do nothing. VBT is reaching a broader and broader audience by the month, and it is possible that you are a candidate now or in the near future. If you are not familiar with VBT, it is a surgical correction of scoliosis without fusion (pedicle screws and a flexible PET type of cable.) It can restore kyphosis as well as correct curves in your range. Currently, even 18 yr olds have received VBT and even an older adult (50?) Some patients find that they are a better candidate for the surgery if they engage in specific spine 'loosening up' exercises such as Schroth.

Currently Dr. Braun (in NH) and the team of Drs Antonacci/ Betz/ Cuddihy are the two that I know of operating on older patients. However, VBT is spreading rapidly around the country. From the original few that were performing it only on immature adolescents a few years ago, to fully grown teens and more. You probably have a good chance for VBT if you look into it. Yes, logistically it is probably harder to get to the east coast for you, but there is going to be hardship somehow for any option.

Stefandamos
10-05-2015, 06:30 PM
I think it is OFTEN the case that adolescents and perhaps young adults like yourself have no pain 10+ years after fusion.

Ask your surgeon if you are more likely to group with the adolescents or the older adults in terms of your outcome pain-wise. My kids were fused in 2008 and 2009 and while they tweak their backs like other people they certainly do not have any regular pain. And I doubt they will given what the surgeon said.

You also have to sort the people whose fusions end above the lumbar versus those whose end in the lumbar.

According to my surgeon, I would heal more like the adolescents. I still have growth plates in my pelvis so even at 22 I'm not 100% skeletally mature.

Stefandamos
10-05-2015, 06:33 PM
I haven't had a chance to reread this thread to see if I can figure out what type of curve the OP has, but I came across a very interesting article in Spine titled Which Lenke 1A Curves Are at the Greatest Risk for Adding-On... and Why? Stefan, if you have access to a medical library, you might want to check it out.

Spine (Phila Pa 1976). 2012 Jul 15;37(16):1384-90. doi: 10.1097/BRS.0b013e31824bac7a.
Which Lenke 1A curves are at the greatest risk for adding-on... and why?
Cho RH1, Yaszay B, Bartley CE, Bastrom TP, Newton PO.
Author information
Abstract
STUDY DESIGN:
Multicenter review of prospectively collected data.
OBJECTIVE:
The purpose of this study was to evaluate the incidence of distal adding-on and associated risk factors in each of the 2 Lenke 1A curve patterns.
SUMMARY OF BACKGROUND DATA:
Previous work has demonstrated 2 distinct Lenke 1A curve patterns on the basis of the tilt of L4 (1A-L and 1A-R) that are different in form and treatment.
METHODS:
A query of a prospective multicenter adolescent idiopathic scoliosis database identified 195 patients with Lenke 1A curves. Patients were grouped on the basis of the direction of the L4 vertebral tilt: 1A-L (left) and 1A-R (right). The incidences as well as clinical and radiographical risk factors for adding-on were identified for each group. Adding-on was defined as an increase in the Cobb angle of at least 5° and distalization of the end vertebra of the thoracic curve or a change in disc angulation of 5° or greater below the lowest instrumented vertebra from the first erect to 2-year postoperative radiographs.
RESULTS:
Forty (21%) patients met the criteria for adding-on. The average increase in Cobb angle was 11.9° for those categorized as having adding-on compared with 3.8° in the non-adding-on group. Lenke 1A-R curves were 2.2 times more likely to experience adding-on than 1A-L curves. In the 1A-R curves, patients who added-on were fused at an average of 1.6 levels proximal to the neutral vertebra versus an average of 0.9 levels proximal to the neutral vertebra for the patients who did not add-on (P = 0.023). Patients who added-on were fused at an average of 2.5 levels above stable versus 2.1 levels above stable in those who did not (P = 0.06). Age and skeletal maturity were not identified as risk factors in the 1A-R curves. In 1A-L curves, younger (12.7 vs. 14.7 yr, P = 0.002) and less skeletally mature patients based on Risser grading (70% vs. 14% Risser 0, P = 0.004) were more likely to experience adding-on.
CONCLUSION:
Understanding the difference between Lenke 1A-L and 1A-R curve types may be helpful in preventing the adding-on phenomena postoperatively. To prevent adding-on in 1A-R curves, we recommend fusing distally to 1 level above the neutral vertebra or 1 to 2 levels above the stable vertebra. In 1A-L curves, adding-on may simply be a need to balance some lumbar curve progression in a young, skeletally immature patient.

Ive attempted to make sense of this information but it doesn't quite make sense to me.

It seems that its talking about possible lumbar curve progression post-op after the thoracic curvature has been fixed in an "s-curve".

So the direction of the curvature (either right or left) plays a role in progression? Lamens terms would be appreciated. Im not a medical professional by any definition.

Stefandamos
10-05-2015, 06:38 PM
One option that hasn't been mentioned yet, besides fusion and waiting/ do nothing. VBT is reaching a broader and broader audience by the month, and it is possible that you are a candidate now or in the near future. If you are not familiar with VBT, it is a surgical correction of scoliosis without fusion (pedicle screws and a flexible PET type of cable.) It can restore kyphosis as well as correct curves in your range. Currently, even 18 yr olds have received VBT and even an older adult (50?) Some patients find that they are a better candidate for the surgery if they engage in specific spine 'loosening up' exercises such as Schroth.

Currently Dr. Braun (in NH) and the team of Drs Antonacci/ Betz/ Cuddihy are the two that I know of operating on older patients. However, VBT is spreading rapidly around the country. From the original few that were performing it only on immature adolescents a few years ago, to fully grown teens and more. You probably have a good chance for VBT if you look into it. Yes, logistically it is probably harder to get to the east coast for you, but there is going to be hardship somehow for any option.

After very brief reading, it seems VBT is meant to allow growth on only one side of the spine in order to fix the curvature. Seeing as my spine is no longer growing significantly, how would this be of benefit?

If it is something that has been done (successfully) on older patients, do you have any links so I can read about them?

Its amazing to see new technology coming out to help scoliosis. Unfortunately, catching it early on seems to be the only way to take advantage of it.

LindaRacine
10-05-2015, 09:30 PM
Ive attempted to make sense of this information but it doesn't quite make sense to me.

It seems that its talking about possible lumbar curve progression post-op after the thoracic curvature has been fixed in an "s-curve".

So the direction of the curvature (either right or left) plays a role in progression? Lamens terms would be appreciated. Im not a medical professional by any definition.

That's why I said that I think you need to check out the entire article. It's not always possible to understand the paper from just the abstract.

--Linda

Jinseeker
10-05-2015, 10:39 PM
I like how this thread is going when coming up with making the right decision despite how hard it is to make.
I have a 45+ deg curve myself, but so far it has not worsen in 10 yrs since skeletal maturity, but I understand it may still worsen at some point.
I was surprised to hear Linda say that she'd not have her initial surgery if she'd known she were to have less flexibility. So I ask, if you didn't have it, you'd still be living with a progressive curve today, how could you come with the conclusion that would be better? Would you think you'd have healthier lumbar discs if you had not at your age?

Sorry Linda if you have missed my question, would like to hear from you. I'm just wondering if one could just have lived better off with a progressive curve of say < 0.5 degrees a year, at age 40 yrs with say a 50 deg curve onwards to an estimated lifetime of say 80 yrs old, and not really have significant pain or problems compared to that of a fused elderly patient in your experience.

3sisters
10-06-2015, 06:04 AM
After very brief reading, it seems VBT is meant to allow growth on only one side of the spine in order to fix the curvature. Seeing as my spine is no longer growing significantly, how would this be of benefit?

If it is something that has been done (successfully) on older patients, do you have any links so I can read about them?

Its amazing to see new technology coming out to help scoliosis. Unfortunately, catching it early on seems to be the only way to take advantage of it.

Firstly, the instrumentation that the surgeons use straightens the curve already. The amount of growth remaining for the patient determines how straight the surgeons will strive to make the curve intra-operatively. In a younger patient, some curve will be left in so that one side of the vertebras will grow, and one side will be arrested.

In a more mature patient, they will strive to gain complete straightness vs what they would obtain in a younger patient. So, immediately post op you can in theory have a straight spine already, yet full mobility (of course with some bend, lift, twist restrictions during healing.) Without growth remaining, I believe the surgeons rely on bone remodeling and the tether lasting for many years, so that growth isn't required.

There is a fb forum with many useful links as well as first hand experiences; send in a request to join if you are interested, since it is a closed group. It is 'Vertebral Body Stapling & Tethering Support.' The criteria for acceptance for this procedure is expanding, and there are stories of skeletally mature patients receiving this surgery already- you can link up through that forum. Hope this helps!

Jinseeker
10-06-2015, 08:57 AM
But wouldn't those tethers also keep the spine immobile just like rods and screws would. What is bone remodeling and how would this be any different than restrictions a fusion would have? How do they remold a vertebrae that has already been wedged shaped for so long, and although it straightens the curve, how does it prevent it from further going back into a curved state after removing the tethers, I doubt they can do any derotation as well.

Pooka1
10-06-2015, 09:07 AM
But wouldn't those tethers also keep the spine immobile just like rods and screws would. What is bone remodeling and how would this be any different than restrictions a fusion would have? How do they remold a vertebrae that has already been wedged shaped for so long, and although it straightens the curve, how does it prevent it from further going back into a curved state after removing the tethers, I doubt they can do any derotation as well.

Wow excellent questions! I wish we could see a surgeon answer them.

With regard to the ROM with a tether, I have read that to only restriction is bending away from the tether as you can imagine. So the spine stays bendable in the front-back plane and you can bend towards to the tethered side if the tether isn't too stiff I guess. I am not sure about twisting about the spine.

I bet they can get some de-rotation if they muscle the tether but obviously I don't really know.

In kids they will remove the tether is there is over-correction but I wonder if they can ever remove the tether in an adult?

Still, I think tethering adults is intriguing and I wish my daughters had that option. Missed it by a few years.

Jinseeker
10-06-2015, 09:27 AM
I just looked it up, haven't found any released as of yet on adults. Candidates are mostly only growing children with thoracic curves only. There hasn't been a long term follow up too but it is FDA approved.

LindaRacine
10-06-2015, 01:53 PM
Sorry Linda if you have missed my question, would like to hear from you. I'm just wondering if one could just have lived better off with a progressive curve of say < 0.5 degrees a year, at age 40 yrs with say a 50 deg curve onwards to an estimated lifetime of say 80 yrs old, and not really have significant pain or problems compared to that of a fused elderly patient in your experience.

I had ~50 degree curves at 43 years old. My thoracic curve was not progressing, so my overall health was not at huge risk. My lumbar curve would now probably be somewhere around 75 degrees. I can't know how disabled I would be. At UCSF, we do see older adult patients with curves of that size quite often. Most have at least some amount of pain.

For me, personally, I would absolutely wait until I had very significant drop in quality of life before agreeing to surgery. A large percentage of adult patients end up needing multiple surgeries. Until that trend can be reversed, it's possible that having surgery will open a door that can't be closed.

Please understand that this is my personal opinion, which, I admit, is largely based on the fact that I'm a wimp who HATES pain and illness.

--Linda

Stefandamos
10-06-2015, 03:09 PM
For me, personally, I would absolutely wait until I had very significant drop in quality of life before agreeing to surgery. A large percentage of adult patients end up needing multiple surgeries. Until that trend can be reversed, it's possible that having surgery will open a door that can't be closed.
--Linda

This is probably the part that scares me the most. It seems that once you have the surgery, then multiple surgeries are put into your future. One of my close friends, who is in their mid 20's, has already had 3 surgeries to fix a double curve. Complications always arise and it seems like he is always in a state of recovery. The moment he feels good, he's usually right back to surgery.

I very badly want a more-symmetrical spine (a perfect one would be nice but very unrealistic unfortunately) but I don't know if the pros outway the cons.

3sisters
10-06-2015, 05:04 PM
I'm not a surgeon, but my kid had VBT and I am heavily engaged in the VBT community and discussions. As far as ROM restrictions, you can fully twist, bend, somersault, flip turn when swimming, yoga, etc throughout the whole tethered area. There is a slight bending limit towards the side opposite the tether, but in the thoracic area that would probably be unnoticed by everyone. The tether is about the consistency (but stronger) than a clothesline, so very flexible. There is no rod or instrumentation to feel along the spine; work is done from the anterior approach.

I am not a VBT salesman, but if I were to have scoliosis surgery that is what I'd choose in a heartbeat. As far as rotation- it is significantly decreased from tethering, and rib resection or thoracoplasty is used when needed for large curves or larger amounts of rotation/ deformity. There is currently no expectation to remove the tethers in youth or adults unless there is a reason such as overcorrection. These doctors are producing great corrections even without factoring in remaining growth some patients have. In more mature patients with little or no growth remaining, they are going home under ten degrees sometimes.

There don't seem to be long term publications on adults because young adults are just now being tethered. Worst case, ten or twenty years down the road maybe something else (or a new tether) would have to be placed. The other option is fusion which many seem to do alright with BUT to me, this non-fused spine is worth a few unanswered questions years down the road. No one knows what would happen with a fusion, either, no guarantees in anything.

Not sure about what you looked up, but they are tethering lumbar curves now, too. And double tethers, even, when necessary for double curves or hybrid (ie thoracic fusion with lumbar tether.) Of course you might not be a candidate due to your age or degrees of curve, but this is cutting edge and definitely something for you and others to think about.

Pooka1
10-06-2015, 08:49 PM
Weren't you and your daughter doing PT? How are the other children who were doing it with you and your daughter doing?

3sisters
10-07-2015, 04:35 AM
Hi Sharon!
Yep, no idea, hopefully they are well. My daughter is great, though. This was a good solution for us.

Stefandamos
10-07-2015, 04:38 AM
I'm not a surgeon, but my kid had VBT and I am heavily engaged in the VBT community and discussions. As far as ROM restrictions, you can fully twist, bend, somersault, flip turn when swimming, yoga, etc throughout the whole tethered area. There is a slight bending limit towards the side opposite the tether, but in the thoracic area that would probably be unnoticed by everyone. The tether is about the consistency (but stronger) than a clothesline, so very flexible. There is no rod or instrumentation to feel along the spine; work is done from the anterior approach.

I am not a VBT salesman, but if I were to have scoliosis surgery that is what I'd choose in a heartbeat. As far as rotation- it is significantly decreased from tethering, and rib resection or thoracoplasty is used when needed for large curves or larger amounts of rotation/ deformity. There is currently no expectation to remove the tethers in youth or adults unless there is a reason such as overcorrection. These doctors are producing great corrections even without factoring in remaining growth some patients have. In more mature patients with little or no growth remaining, they are going home under ten degrees sometimes.

There don't seem to be long term publications on adults because young adults are just now being tethered. Worst case, ten or twenty years down the road maybe something else (or a new tether) would have to be placed. The other option is fusion which many seem to do alright with BUT to me, this non-fused spine is worth a few unanswered questions years down the road. No one knows what would happen with a fusion, either, no guarantees in anything.

Not sure about what you looked up, but they are tethering lumbar curves now, too. And double tethers, even, when necessary for double curves or hybrid (ie thoracic fusion with lumbar tether.) Of course you might not be a candidate due to your age or degrees of curve, but this is cutting edge and definitely something for you and others to think about.

So this is something that young adults are doing? If I could get this surgery and avoid fusion for now while also having curve reduction, I'd be a very happy person.

Are there any case studies of this done on people arou d my age? (22 year old male).

In theory, tethering seems like a better method for ROM and to save your discs above and below your curve. However, if a tether breaks, does your curve just suddenly snap back to its originam curvature? It seems that could be deadly.

However, I also wonder if holding a curve in position while workingout on a normal basis would cause your bone to remodel to that "fixed" position. If so, wouldn't complete straightening of the spine be possible after multiple surgeries?

3sisters
10-07-2015, 03:44 PM
Well, I don't know ages of all receiving VBT but so far some have definitely been skeletally mature; about age 17 and reportedly a grown woman. (Although I have not talked with her to confirm, I have heard that it was taking place.) There are other near the age of 20 also seeking consideration. What will the result be? Hopefully more and more are accepted at these increasing ages. So, the times they are changing. Just a few years ago any youth much beyond Risser 0 was barely a candidate. Now, even some of the more conservative surgeons are taking higher Risser patients. And, like I said, two surgical teams that I mentioned earlier are pushing the envelope of having tethered completely mature patients.

The correction is gained at one time, not in progressive surgeries. It is major surgery much like fusion in many ways, and re-operating is challenging. It involves scar tissue from the first surgery, etc. VBT is usually done endoscopically (but not always,) and spares muscles, but still demanding for the patient and expensive.

I believe that some feel the bone will remodel, but I don't have the information to comment on that as a fact. Many think the tether won't break for many years, if ever. That being said, if it did break in one place and there were not bone remodeling it is supposed (by some surgeons, including one that I talked with- Dr. Cuddihy in this instance) that the amount of curve between those two tethered vertebras could come back- surely not in a 'snap back' moment, I think! However, that could be minimal as she explained to me. Using her example, where a tether goes from T5-T12 and corrects a 45 degree curve to 10. If one level of tether breaks, the remaining tether points are still 'fixed' so perhaps would result in a five or seven degree regression (just what was tethered in that space.) The tether is affixed by a pedicle screw and each is independently tightened. So, a break at one level would not cause an 'unraveling' or loss of the whole tether. Similarly, perhaps it won't break and even if it does, maybe there would not be any regression. Time and these experienced surgeons will determine that. There IS agreement that there is no harm in leaving a broken tether in the body after it has served it's purpose; it would still be firmly attached to each each vertebra by it's pedicle screw.

Stefandamos
10-07-2015, 04:16 PM
Well, I don't know ages of all receiving VBT but so far some have definitely been skeletally mature; about age 17 and reportedly a grown woman. (Although I have not talked with her to confirm, I have heard that it was taking place.) There are other near the age of 20 also seeking consideration. What will the result be? Hopefully more and more are accepted at these increasing ages. So, the times they are changing. Just a few years ago any youth much beyond Risser 0 was barely a candidate. Now, even some of the more conservative surgeons are taking higher Risser patients. And, like I said, two surgical teams that I mentioned earlier are pushing the envelope of having tethered completely mature patients.

The correction is gained at one time, not in progressive surgeries. It is major surgery much like fusion in many ways, and re-operating is challenging. It involves scar tissue from the first surgery, etc. VBT is usually done endoscopically (but not always,) and spares muscles, but still demanding for the patient and expensive.

I believe that some feel the bone will remodel, but I don't have the information to comment on that as a fact. Many think the tether won't break for many years, if ever. That being said, if it did break in one place and there were not bone remodeling it is supposed (by some surgeons, including one that I talked with- Dr. Cuddihy in this instance) that the amount of curve between those two tethered vertebras could come back- surely not in a 'snap back' moment, I think! However, that could be minimal as she explained to me. Using her example, where a tether goes from T5-T12 and corrects a 45 degree curve to 10. If one level of tether breaks, the remaining tether points are still 'fixed' so perhaps would result in a five or seven degree regression (just what was tethered in that space.) The tether is affixed by a pedicle screw and each is independently tightened. So, a break at one level would not cause an 'unraveling' or loss of the whole tether. Similarly, perhaps it won't break and even if it does, maybe there would not be any regression. Time and these experienced surgeons will determine that. There IS agreement that there is no harm in leaving a broken tether in the body after it has served it's purpose; it would still be firmly attached to each each vertebra by it's pedicle screw.

If I were to want to get a consultation for this, where would I go? This surgery seems to take less of a toll on the body. Also, fusion seems to be a temporary fix because eventually it will lead to more problems.

Money is not an issue for me right now. Would I have to fly elsewhere to get someone to look at this as a possibility or is this something that can be communicated over a distance?

Would love to know where you are involved in theae discussions that way I can stay up-to-date. Im surprised I have not heard about this any sooner.

3sisters
10-07-2015, 05:51 PM
If I were to want to get a consultation for this, where would I go? This surgery seems to take less of a toll on the body. Also, fusion seems to be a temporary fix because eventually it will lead to more problems.

Money is not an issue for me right now. Would I have to fly elsewhere to get someone to look at this as a possibility or is this something that can be communicated over a distance?

Would love to know where you are involved in theae discussions that way I can stay up-to-date. Im surprised I have not heard about this any sooner.

Like I mentioned earlier in your thread, there are two doctors that I know of currently doing this with mature patients/ young adults. I would start with calling them and they would probably want you to email copies of your xrays. I know there is an online consult form you can submit to get the ball rolling at Institute for Spine and Scoliosis (Drs. Betz, Atonacci, and Cuddihy) in Lawrenceville, NJ, (with offices in NYC also) and the other doctor is Dr. Braun who I think is at Dartmouth Hitchcock in NH. If either determines you are possibly a candidate, then they generally require an office visit for further evaluation.

If you haven't checked out the closed fb forum group, Vertebral Body Stapling & Tethering Support, I highly recommend it. There is a list of resources to include a growing list of physicians performing VBT. That is where I get info, as well as from our personal situation. Of course I cannot share personal info from the patients from that forum on this one, but you can submit a request through the moderator; can take a few days for approval.

You might not be approved; some are not candidates and are turned away, BUT some are accepted. No stone left unturned. I hope that you find help you are looking for, or at least reassurance about your situation and options. And, if for some reason you are not a candidate right now, you might get insight into what is coming soon and how you can be a pioneer in new scoliosis options.

My daughter dances ballet and loves dance; I feel so uplifted watching her continue to thrive in this exacting discipline. She had a new teacher this year that was recently scrutinizing her back/ small scars, amazed/ confused/ impressed!

AMom
10-09-2015, 04:31 PM
Like I mentioned earlier in your thread, there are two doctors that I know of currently doing this with mature patients/ young adults. I would start with calling them and they would probably want you to email copies of your xrays. I know there is an online consult form you can submit to get the ball rolling at Institute for Spine and Scoliosis (Drs. Betz, Atonacci, and Cuddihy) in Lawrenceville, NJ, (with offices in NYC also) and the other doctor is Dr. Braun who I think is at Dartmouth Hitchcock in NH. If either determines you are possibly a candidate, then they generally require an office visit for further evaluation.
...
You might not be approved; some are not candidates and are turned away, BUT some are accepted. No stone left unturned. I hope that you find help you are looking for, or at least reassurance about your situation and options. And, if for some reason you are not a candidate right now, you might get insight into what is coming soon and how you can be a pioneer in new scoliosis options.


I have been following your thread and contacted the Institute for Spine and Scoliosis yesterday. I sent a request asking if my daughter is too old to be considered in the recently adjusted acceptable age group for the tethering procedure:15.11yro daughter, idiopathic scoliosis, thoracolumbar curve progressing each year, 40+ degrees, Risser 4, Tanner 5, menstrual cycle since 2012, full growth achieved per wrist and endo, 110lbs, 4'9", some back pain noted for 1st time in 2014 w/ more noted 2015, 2008 MRI r/o additional concerns, read on NSF that tethering may be an option for young adults--if so, may I forward her x-rays for consideration?

This is the response I received today. I am really not sure if including names is appropriate, so I replaced them with dashes:
This is Dr. ---. I just reviewed your intake, and have asked our physician assistant, ---(cc’d here) to reach out to you. She will gather some more information, and discuss your child’s situation and options. Your daughter is not too old for this. I would recommend either sending your child’s films next or coming for a visit with --- and Dr. ---. Typically, Dr. --- and --- will do a thorough preoperative evaluation and if surgery is recommended, I would then also meet you. I review Dr. ---’s recommendation, and take you through the surgery details itself. At that time, you would also meet my surgical coordinator, ---.

I bolded the portion in the response I received from the Institute for Spine and Scoliosis.

I will step out of your thread, just wanted to share how quickly I received a response.

A Mom

Jinseeker
10-09-2015, 11:25 PM
I had ~50 degree curves at 43 years old. My thoracic curve was not progressing, so my overall health was not at huge risk. My lumbar curve would now probably be somewhere around 75 degrees. I can't know how disabled I would be. At UCSF, we do see older adult patients with curves of that size quite often. Most have at least some amount of pain.

For me, personally, I would absolutely wait until I had very significant drop in quality of life before agreeing to surgery. A large percentage of adult patients end up needing multiple surgeries. Until that trend can be reversed, it's possible that having surgery will open a door that can't be closed.

Please understand that this is my personal opinion, which, I admit, is largely based on the fact that I'm a wimp who HATES pain and illness.

--Linda

Thanks for your reply Linda. As I remember, the surgeon had told me he would fuse at about L1 or L2, and that the structural lumbar curve would align well. From your experience what are the chances of those fused to L1 or L2 with a good lumbar alignment of getting an extension of fusion somewhere down the line, especially those who had it done when they were in their teens? I know I have heard from Dr. Boachie and Hey of one stop shopping one time fusions if it were to end in L1 or T12, but I can't help but think that they may be just be exaggerating. Sorry for the questions, but your experience is invaluable.

titaniumed
10-10-2015, 11:31 AM
For me, personally, I would absolutely wait until I had very significant drop in quality of life before agreeing to surgery. A large percentage of adult patients end up needing multiple surgeries. Until that trend can be reversed, it's possible that having surgery will open a door that can't be closed.
--Linda

This is valuable advice, carve it into stone.

After I had my surgeries done and recovered and was doing well, I thought it was such a miracle, which it was, but after reading and posting here for almost a decade, my views on surgery have leaned in the same direction as Linda’s. There are stats on complications, and some might be small, but they only matter when they happen to you. Revision surgeries can be difficult and heartbreaking. Pathogens are also everyone’s war.

For those that make it into their 20’s without surgery,(with curves under 40, that have consulted with a scoliosis surgeon) and have manageable pain, you can go a long time without surgery. My 40’s were a painful period, if I had to re-do it all over again, I would have my surgeries at age 40. (Twin 60’s with bad lumbar)

The tethering concept is neat......but its still surgery which can include complications, immediate, delayed, or resulting.

I have taken many blacklisted medications in my time.....so, given the studies, doubts do arise, and this is where faith comes in. We are only human.

There are no guarantees on anything, only your knowledge, but memory fades with age......

We live in such a dynamic world.....

Ed

Stefandamos
10-10-2015, 12:08 PM
This is valuable advice, carve it into stone.

After I had my surgeries done and recovered and was doing well, I thought it was such a miracle, which it was, but after reading and posting here for almost a decade, my views on surgery have leaned in the same direction as Linda’s. There are stats on complications, and some might be small, but they only matter when they happen to you. Revision surgeries can be difficult and heartbreaking. Pathogens are also everyone’s war.

For those that make it into their 20’s without surgery,(with curves under 40, that have consulted with a scoliosis surgeon) and have manageable pain, you can go a long time without surgery. My 40’s were a painful period, if I had to re-do it all over again, I would have my surgeries at age 40. (Twin 60’s with bad lumbar)

The tethering concept is neat......but its still surgery which can include complications, immediate, delayed, or resulting.

I have taken many blacklisted medications in my time.....so, given the studies, doubts do arise, and this is where faith comes in. We are only human.

There are no guarantees on anything, only your knowledge, but memory fades with age......

We live in such a dynamic world.....

Ed

I can't help but feel like something about this needs to be done. I know that's the wrong mentality to have but simply watching and waiting until I'm in severe pain seems terrible.

I'm 22 right now and only one of my curves is over 40. However, I'm uncomfortable 24/7. Not a moment goes by that I don't feel like stretching or cracking my back. I feel that surgery would even out my muscles and at least reduce that feeling.

Also, don't younger people tend to recover better with less long-term complications?

3sisters
10-10-2015, 12:47 PM
Meanwhile, to help you deal with your discomfort while you consider everything, you might want to try a scoliosis specific program of exercises. I have personally pursued them (Schroth) and they did improve the appearance and feeling of my spine, although questionably the actual curvature. It's a way to help make it through these times. When I was measured after a period of Schroth exercising, my rotation in my curves had improved by 5 and 10 ATR. (Down to 10 ATR over 5 ATR, from about 15 over 15 ATR pre-exercises.) Since balance and appearance is important to you, it's something you might appreciate. They felt pretty good, too!

I still can't condemn 'elective' surgery like VBT. I am not a wisened fusion veteran like some here who have seen a lot of good, bad, and ugly- but I feel the benefits of non-fusion surgery are worth it. Have enough advice and opinions yet?! :)

Stefandamos
10-10-2015, 05:42 PM
Meanwhile, to help you deal with your discomfort while you consider everything, you might want to try a scoliosis specific program of exercises. I have personally pursued them (Schroth) and they did improve the appearance and feeling of my spine, although questionably the actual curvature. It's a way to help make it through these times. When I was measured after a period of Schroth exercising, my rotation in my curves had improved by 5 and 10 ATR. (Down to 10 ATR over 5 ATR, from about 15 over 15 ATR pre-exercises.) Since balance and appearance is important to you, it's something you might appreciate. They felt pretty good, too!

I still can't condemn 'elective' surgery like VBT. I am not a wisened fusion veteran like some here who have seen a lot of good, bad, and ugly- but I feel the benefits of non-fusion surgery are worth it. Have enough advice and opinions yet?! :)

I visit the gym a few times a week a play hockey twice a week and that definitely helps! Ill look into scoliosis specific exercises though!

I have all the advice I'd need and more! Especially after hearing about VBT. If I could get a surgery that would both lessen my curve AND postpone fusion, it's the best of both worlds. Seems like a better option than watching a waiting.

Pooka1
10-10-2015, 05:59 PM
If I understand correctly, tethering is intended not just to postpone fusion but to avoid it. If you have a structural curve that is corrected enough with tethering, I think the intention is that will avoid fusion.

I really wish this was an option for my daughters but they presented several years too soon. I am just glad they have a shot at not needing any more surgery once they had their T curves fused.

Have you determined if your lowest curve is compensatory or structural? Have you done bending radiographs?

3sisters
10-10-2015, 06:55 PM
Yes, Sharon, it is expected that the tethering would mean no fusion in the future. There are no studies twenty years out, naturally, but if necessary the tether could be replaced and the patient drive on as before.

Even in patients with two curves, the lower one is now being tethered, as well. Sometimes as a double tether (with one for the thoracic curve, then a second one for the lumbar curve.) Some patients with stiffer or larger curves have received a hybrid procedure with a thoracic fusion over a lumbar tether. The things these surgeons are doing! To date, there is no 'high' tethering; most surgeons can't or won't go above T5 for various reasons. But for some with a high curve, it responds well to the thoracic tethering and reduces some.

VBT isn't for everyone, naturally. There are still strict considerations that many don't meet.

Restrictions are typically lifted after six weeks, but that varies with individual surgeons. Some are waiting longer.

Stefan, there are physical therapists trained in teaching Schroth exercises. Like anything, their skills and experience vary; I'd probably use word of mouth to find a reputable one to get you started. There do seem to be PTs willing to claim and sell any kind of dream to eager patients, so I'd encourage you to do your homework well if you take that route. If you do talk to an experienced scoliosis surgeon that you like and trust, s/he can probably suggest a reliable therapist.

Jinseeker
10-10-2015, 11:04 PM
Meanwhile, to help you deal with your discomfort while you consider everything, you might want to try a scoliosis specific program of exercises. I have personally pursued them (Schroth) and they did improve the appearance and feeling of my spine, although questionably the actual curvature. It's a way to help make it through these times. When I was measured after a period of Schroth exercising, my rotation in my curves had improved by 5 and 10 ATR. (Down to 10 ATR over 5 ATR, from about 15 over 15 ATR pre-exercises.) Since balance and appearance is important to you, it's something you might appreciate. They felt pretty good, too!

I still can't condemn 'elective' surgery like VBT. I am not a wisened fusion veteran like some here who have seen a lot of good, bad, and ugly- but I feel the benefits of non-fusion surgery are worth it. Have enough advice and opinions yet?! :)

Good to hear schroth seems to be doing you good and have given you some temporary cosmetic improvements. For me it only helped with the pain, not reduce the rib hump. Curious to know how often do you do it to have results and how long per exercise? Do you have a therapist that works with you and is it possible to achieve good results on your own?

I realized our curves are about the same size and area. Did your curve progress? Perhaps you could share some of the schroth exercises you are doing.

3sisters
10-11-2015, 04:26 AM
will pm you, don't want to hijack Stefan's thread with my personal tangent

Mojo's Mom
10-21-2015, 10:41 AM
Hi everyone. Long time reader but first time poster. My question goes out to those of you who have had scoliosis corrective surgery already.

A little bit of background:
I am 22 years old, currently working full-time and going to school full-time. I was diagnosed with scoliosis when I was 12 years old and had an 11° thoracic curvature. Now at my current age I currently have a double curvature of 43°T and 35°L. However, over the last year, my curve has not progressed and my doctor claims that it most likely won't.

As of right now I experience almost no pain and only minor discomfort. The thing that gets to me though is the cosmetic appearance of this condition. So my question is, is scoliosis surgery worth getting for mostly cosmetic appearances?

I understand a lot about the surgery and even have a couple friends who have been through it themselves. I play hockey and go to the gym often and understand that I would have to give those up for the most part.

All replies are appreciated!


Wow, lots of long and detailed responses, but I focused on what was asked: is it something to do for mostly cosmetic reasons. NO. This is huge, huge surgery to rebuild the entire architecture of your spine, permanently fusing rigid what was meant to be a very flexible and resilient structure. There are no perfect bodies, try to love the look of yours as it is. If you can do that and then still feel compelled to risk this surgery for true health reasons, that would be a solid reason to proceed. Once done, there is no going back, and also no guarantees you won't have complications and/or more surgeries down the road. Just my opinion.