Is surgery worth having?

[LindaRacine]

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]

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]

more VBT info

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]

Weren't you and your daughter doing PT? How are the other children who were doing it with you and your daughter doing?

[3sisters]

Hi Sharon!
Yep, no idea, hopefully they are well. My daughter is great, though. This was a good solution for us.

[Stefandamos]

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]

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]

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]

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]

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]

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]

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]

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]

Meanwhile

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]

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.