Dr's appointment today.

[Kay1974]

Today I met with two different surgeons in NYC about my scoliosis. I do have an atypical curve with daily pain in my lower back and into my rt buttock area and thigh. It is getting worse.

Dr. Lenke suggested fusion from T10- L3, although he was concerned with L4 disk and wants to get a catscan of this area as the disk above and below it look great, he said he was shocked that my disc look liked that because he just didn't expect it. He did say that this would help me but I'd probably need more surgery under the fusion with signs of degeneration in L4 but could maybe do minimly invasive on that disc with an associate of his. He measured my curve to be 56. The local orthopedic Dr said it was only 41 about a month ago. Dr Lenke wants to get an MRI of my cervical and thiracic area also.

Dr Lonner was my second appt. and after Lenke my heart was already saying, I need to fix this and fusion is the best way if that's what Lenke said. Dr Lonner thinks I'd be a candidate for VBT and said he'd tether t11- l3. I did not get bending xrays done yet so will have to do that as he needs me to be flexible. And also a dexascan done. He feels he could preserve those discs with tethering.

My head is full of information and I have to figure all this out and of course am overwhelmed and scared. Fri everything I've read, both are great surgeons and have offered to help me. I had no idea my curve was that size and now I think it will just keep growing and causing me more pain. I'm terrible at making big decisions. Everyone here has been so great with support and acceptance.

[titaniumed]

Melisse

I am surprised you got in to see Dr Lenke....and it would be interesting to get Dr Lenke’s thoughts on tethering.....T10-L3 is a short fusion.

T11-L3 is also short.... Did Dr Lonner say how “low” he could tether? Was this brought up?

You don’t have to make a decision right away......

Ed

[Pooka1]

Although tethering is new in general and especially new in mature adults (the Facebook tethering group only reports one that they know of), there is almost no downside to tethering instead of a fusion, especially for lumbar. The only potential downside is another operation to fuse if it doesn't stabilize your spine and remove your nerve pain. Most of the few hundred patients so far are growing kids.

If you want access to information from a patient and parent lead group on tethering, you can ask to join this group...

https://www.facebook.com/groups/ScoliosisTethering/

There is another FB group called "Vertebral Body Tethering" or something like that that is run by chiros. They have no expertise and shouldn't be dealing with scoliosis.

[Kay1974]

Dr Lenke really thought my case would be fairly easy until he saw my MRI. He said L4 and L5 did not look right and it could make things complicated with his suggested fusion. It's not settled yet I guess and up in the air. I think because I have a severe rt lumbar curve with pain is why I should fix it now. He of course is wanting a full MRI and bone scan also so his plan could change on me.

I only had a short visit with Dr Lonner and I'm just not sure if I should even think about VBT with having atypical curves and daily pain. He said I could call him to discuss more with any questions I have on it but he thinks it could work on me. I didn't ask how low he could go either.

Either way, screws and surgery sound like my future, and I'm not ready for that!

[Pooka1]

Dr Lenke really thought my case would be fairly easy until he saw my MRI. He said L4 and L5 did not look right and it could make things complicated with his suggested fusion. It's not settled yet I guess and up in the air. I think because I have a severe rt lumbar curve with pain is why I should fix it now. He of course is wanting a full MRI and bone scan also so his plan could change on me.

I only had a short visit with Dr Lonner and I'm just not sure if I should even think about VBT with having atypical curves and daily pain. He said I could call him to discuss more with any questions I have on it but he thinks it could work on me. I didn't ask how low he could go either.

Either way, screws and surgery sound like my future, and I'm not ready for that!

It will be interesting to see what Lonner says on the issue of resolving pain with tethering. I can't imagine he has any evidence at all to speak to the issue. There is ONE mature patient who has been tethered as far as anyone knows. He will necessarily be using the information from the growing kids which may not be relevant. The FB group will have no information on this unless the one mature patient had a curve like yours with pain. And even then that is just one patient.

I think your case may indicate that disc damage can be expected below a curve whether or not it is fused. This point is missing completely by folks. Fusion is about cutting your loses. Normal is off the table. That is the lesson I have learned from my twin daughters being fused as teenagers. They are in college now and we never talk about scoliosis. They have moved on into active lives.

I wish you luck.

[Kay1974]

It will be interesting to see what Lonner says on the issue of resolving pain with tethering. I can't imagine he has any evidence at all to speak to the issue. There is ONE mature patient who has been tethered as far as anyone knows. He will necessarily be using the information from the growing kids which may not be relevant. The FB group will have no information on this unless the one mature patient had a curve like yours with pain. And even then that is just one patient.

He did mention as I was leaving that I should get try injections to see if that fixes or solves the pain in my rt. side butt, thigh area. Either Dr. did not say that this would completely fix my pain but that it should take the stress off and it have a better chance as I get older to have a better quality of life.

I think your case may indicate that disc damage can be expected below a curve whether or not it is fused. This point is missing completely by folks. Fusion is about cutting your loses. Normal is off the table. That is the lesson I have learned from my twin daughters being fused as teenagers. They are in college now and we never talk about scoliosis. They have moved on into active lives.

I wish you luck.

Yes, I agree Sharon with the Lumbar comment. There is no guarantee what happens below it either way I go for treatment. There have been older teen cases of the Lumbar tethering being successful and that is promising to me. I think their ages were 16 and up to 21. I will have pain to some degree and that just reality. I am a member of that tethering group you mentioned and have spoke some to a few members, great group also like this one. Its not the chiro site either, that's not what I'm interested in at all for myself.

[LindaRacine]

there is almost no downside to tethering instead of a fusion, especially for lumbar. The only potential downside is another operation to fuse if it doesn't stabilize your spine and remove your nerve pain.

Sorry, gotta disagree here. I don't want to rain on anyone's parade, but it takes 10+ years to find out what most of the potential complications are for new implant technology. With that said, the current technology of fusion with segmental hardware has a very high complication rate in adults, so that's no walk in the park either. However, I always worry that any new treatment might have a complication that cannot be fixed, which could be a disaster for young adults. No one should rush into any new treatment without truly considering what they might be signing up for.

--Linda

[Pooka1]

Sorry, gotta disagree here. I don't want to rain on anyone's parade, but it takes 10+ years to find out what most of the potential complications are for new implant technology. With that said, the current technology of fusion with segmental hardware has a very high complication rate in adults, so that's no walk in the park either. However, I always worry that any new treatment might have a complication that cannot be fixed, which could be a disaster for young adults. No one should rush into any new treatment without truly considering what they might be signing up for.

--Linda

Well, I don't disagree but will point out that even the flatback issues with the Harrington rods that extend below the thorax are generally salvageable as far as I know. Maybe there is something worse that tethering can trigger but I don't know what that might be.

Speaking of the sagittal plane, if you need metals rods that are bent by tools to restore normal kyphosis and lordosis, I am not understanding how a tether could do anything but hypokyphose the thorax and cause flatback in the lumbar. That tether has to be damn tight to pull the curve out in the coronal plane. If it's that tight how can it allow curves in any other plane? I am sure I am missing something. If there is a long-term problem with tethering, my guess it will be the inability to address the sagittal plane.

[Pooka1]

I looked at some radiographs of tethered patients. It seems like they only do short segments, generally shorter than most fusions I have heard about. In that case maybe they won't hypokyphose the thorax or flatten the lumbar enough to cause a problem. If so, then the people who will benefit will be people who can get by with a shorter fusion it seems. I am just spitting in the wind here obviously.

How long did it take to start seeing flatback with the Harrington rods? Maybe it is still too early to see that with tethering.

I found a paper where they did a posterior tether on a sheep model for kyphosis. But all these tethers they are doing now are anterior as far as I know.

[Kay1974]

Dr. Lonner proposed to tether T11-L3. I just have to be honest here, I am no expert on having this severe curve so I don't know what the best thing to do is. I know I am a fighter and I am strong and will have to keep that front and center. I asked Dr. Lonner about the tethering and what if it doesn't hold and work, he said then you could still have fusion but I don't believe he would have agreed to it if he didn't think It would work. My big concern is that I would have these screws going in sideway on my vertebral columns and then fusion would require 2 more on each vertebrae going in from the back around my spinal chord. Wouldn't this cause a high rate of my bone to be weakened and maybe even fracture with all these scres in there going both ways? Again I don't know enough about the science of how all this works.

I am still in shock obviously about hearing 2 expert Drs tell me, I need to fix it now and should not wait. I always thought that surgery was a last ditch effort and i should let it just about disable me before I have surgery as the worse off a person is in pain the better the outcome? I thought I could get by at least 5 more years but my pain is sitting at about a 4 level of pain and will only get worse likely. I know I cant predict 10 years down the road and neither can the Dr's, other than I will likely need more surgery.

I truly appreciate this conversation and all of your knowledge as I do know you are more experts than me.

[LindaRacine]

Sharon...

I think the problem with Harrington rods was first publicly discussed in the mid-1980's. Harrington implants were first developed ~1960.

Don't get me wrong. I think tethering is definitely promising (though I'm less sure about that in adults). My point is that we should always understand that there is potentially a significant risk with any new procedure. If Dr. Lonner really felt strongly about doing tethering in older adults, he would probably have started talking about it publicly by now. (I'm talking about discussing it at professional meetings. As far as I know, that hasn't happened.) If he were being completely honest, he would probably tell you that he doesn't really know what's going to happen. Patients willing to take these big risks are definitely a gift when one is testing an hypothesis.

As we say about other procedures, if MDs thought this was the next big thing, and that there wasn't significant potential for unknown complications, they'd probably all be doing it by now.

You may remember the debate from the early 2000's in regard to Robert Gaines "short segment bone-on-bone" fusions". Some patients were sure this was going to be the next big thing. As far as I know, Gaines still thinks that. It never caught on. Other experts felt strongly that the procedure had a very high risk of flattening the fused segments in the sagittal plane, and as far as I know, no one else has jumped on that bandwagon.

Kay... that's a good question about whether there might be a weakness from the holes drilled for both tethering and pedicle screws. I've never heard that it's a problem. A lot of us have both anterior and posterior screws that were implanted in the 1990's, so if there were to be a problem, we would probably have heard about it by now.

--Linda

[titaniumed]

Melisse

Your doing the right thing, and making the right moves. I think that for now, try to absorb what’s happened, and follow up with Dr Lenke on your L4 disc situation. I would want an answer on this from him, its important.

My surgeon repeated a few times, “Why did you wait so long” and as many of us here know, there isn’t an answer for this. Its scary stuff....The old school mentality when I was a kid was “spine surgery, are you nuts?” but things have improved leaps and bounds since then. I waited for science and technology to improve, which it did, but we are complicated. Our bodies are complicated. There are some questions that have no answers, so this is why “last ditch effort” is this thought that should act as a common denominator in all surgical decision making. Running into scoliosis surgery is not what you want to do without being informed. Its also not to be treated as a check list, “I want to do this now so I don’t have to worry about it later”. We have our curve sizes and shapes along with our age, this along with pain usually dictates when to have surgery. Pain will make your decision for you. Surgeons will say, don’t wait, and you can ask them for a timeframe, and some will say within a year....Timing is critical in scoliosis surgery. When to do it is always the hardest part and there is never a good time. You can respond with “I’m not ready” and they will ask you to think about things....Good surgeons will understand this.

Determining pain is so subjective. As I aged, my pains increased, but the pre surgical aches and binding were things I could manage. When you start having DDD and disc herniation problems, this pain enters a whole new caliber, so the pre surgical aches and binding pains were easy in comparison. I struggled with 4 lumbar herniation’s in a 70 from age 42 to 49, and that period was a painful period. At age 49, it was mind blowing, the sciatica was relentless, and it did drive me into difficult surgeries with a guarantee that there would be complications. I did have minor complications, and many are resolvable. Some complications can be extremely difficult to deal with, infection and non-union, and pain that doesn’t quit. I consider myself lucky and my surgeon takes no credit. He just shakes his head. Complications can happen on any surgery, including tethering, so we need to be aware. Nerve damage, and infarction can have lasting painful effects, members have posted about these things here in the past. In scoliosis surgery, we think about nerves. The question that everyone thinks about is paralysis, which is rare. Infarction is about blood flow or lack of. Cut off the blood, or lower the blood pressure, and you can have problems.

Tethering has the advantage in that the screws enter the vertebral body from the side. There is plenty of mass in regards to the screw size, and you don’t have to worry about a pedicle screw breach. I really hate to bring this up, but it does happen. I don’t think any tethering revisions have been done yet (you could ask) but if a revision is done, I would suppose that the tethering screws from the side would be removed before a pedicle screw is driven in. This would be a good question to ask. They could also go above or below and bypass the tethering screw levels. Not all patients have screws driven in on every level.

Nobody can tell you you have to have surgery. Only you can decide.....When we run out of time, our decisions are usually the most important decisions we make in our lifetimes.

There is a lot to think about and you are very brave....

It would be a good idea to order David Wolpert’s book. Its sold here at NSF. He did a great job on it.

Deep breaths!

BTW, excellent post from Linda, and great questions from Sharon.

Ed

[Pooka1]

As usual, both Linda and Ed make important points. They are both patients and Linda works in this field.

So there was a gap of ~ 25 years in-between H rods starting to be used and the flatback issue. That's quite a while where people were getting benefit from an ultimately failed procedure. If tethering had a similar time line PLUS increased range of motion, that might not be viewed as a bad thing. And I certainly have no idea if tethering will negatively affect the sagittal plane. I would love to hear Lonner discuss how a tether can be tight enough to decrease a curve in the coronal pane and yet not decrease any curves in other planes. That sounds like quite the trick. I think the key is the short length. Melisse was told it would be a 5 level fusion.

So much to consider. Has the one patient like you who has been tethered posted on the FB group? If so, what levels were tethered with her? Is she still the only mature adult ever tethered?

[Pooka1]

As we say about other procedures, if MDs thought this was the next big thing, and that there wasn't significant potential for unknown complications, they'd probably all be doing it by now.

Mature adults aside, isn't tethering viewed as the next big thing for growing kids? I think the number of surgeons who are dong the technique is growing fast, yes? Still I think I read a recent article where only about 200 kids have been tethered. Is that right? That may be a lot for a cutting edge experimental technique.

I wonder about the speed of adoption of tethering versus that for stapling. A rough read of the pediatric surgeons thoughts about tethering might be gleaned from the comparison with how many surgeons came on board with stapling and how fast. Are most switching to tethering? Maybe we can see how they feel about tethering compared to at least stapling from all that.

[LindaRacine]

Mature adults aside, isn't tethering viewed as the next big thing for growing kids? I think the number of surgeons who are dong the technique is growing fast, yes? Still I think I read a recent article where only about 200 kids have been tethered. Is that right? That may be a lot for a cutting edge experimental technique.

I wonder about the speed of adoption of tethering versus that for stapling. A rough read of the pediatric surgeons thoughts about tethering might be gleaned from the comparison with how many surgeons came on board with stapling and how fast. Are most switching to tethering? Maybe we can see how they feel about tethering compared to at least stapling from all that.

Sorry, I don't really know. I've really stopped following the issues surrounding scoliosis in non-adults. I can tell you that there have been very few podium presentations at iMAST and SRS meetings. Those are the big meetings for deformity professionals, so that's where we'd expect to see presentations on the subject. The 2016 SRS meeting had only 2 presentations on tethering, and one of the presentations had a disappointing conclusion:

"Conclusion
Despite initial reductions in Cobb angle, the 2-4 year postop
assessment of ASGT with current technology has resulted in
less than ideal outcomes for ~40%, partially explained by tether
breakage in ~50%. The tether clearly affects spinal growth, and
avoided spinal fusion in 13 of 17 patients at current follow-up.
Understanding the variables leading to success/failure will be
critical in advancing a reliable definitive non-fusion treatment for
progressive scoliosis."