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Kay1974
02-22-2017, 12:19 AM
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
02-22-2017, 12:54 AM
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
02-22-2017, 07:49 AM
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
02-22-2017, 08:11 AM
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
02-22-2017, 08:29 AM
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
02-22-2017, 12:33 PM
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
02-23-2017, 01:09 AM
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
02-23-2017, 07:49 AM
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
02-23-2017, 08:54 AM
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
02-23-2017, 09:24 AM
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
02-23-2017, 10:23 PM
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
02-23-2017, 10:49 PM
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
02-23-2017, 11:19 PM
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
02-24-2017, 08:26 AM
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
02-25-2017, 01:37 AM
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."

Kay1974
02-25-2017, 08:45 AM
Ed, i do plan on taking my time not rushing into this but also not putting it off too long. This journey has become almost a job to try and learn and figure out the best way I need to go. It hasn't been easy, lots of tears and doubts. I have managed to stay focused though with daily exercise, deep breathing and eating right. I don't have time to lose it if you know what I mean. I am planning on heading back in June to have all the tests Dr. Lenke wants to review my case in more detail and have a better look at that L4-L5 area. I'll try not to freeze when he's in the room and ask him everything I need to. I did call his nurse and ask his thoughts on VBT and I did not get that. He only does posterior fusion and from what he knows this is an experimental procedure done on juveniles and adolescents and not indicated on adults. So still not sure his thoughts on me in particular and my spine.

Dr. Lenke did also indicate I would have osteotomys done from TII- L2. My fusion would be 6 levels, T10-L3. Is this common to have osteotomys with fusion? I wonder how tethering would work with not doing this? Again so many questions I just don't understand. I have read on the other forum that some of the tether Dr's do disk release. I have been in contact with others who have had this. It seems to work for those who have had it. I would think based off what I've read there have been several hundred cases done.

Sharon, I am planning on asking about the Sagital plane and any other important questions I can compile.

Linda, can you please sende the link on my type of fusion outcome? Also, when you had your second fusion, how do they fuse to what you've already had done? I know this will be my case if I am fused and I'd like to understand a little more how a revision works with outcomes.

Pooka1
02-25-2017, 09:42 AM
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."

Thanks for posting that Linda. I find it confusing.

So 76% (13 of 17) of patients avoided fusion yet ~40% had a less than ideal outcome??? So a few of the 13 had some issue that was less than ideal although they avoided fusion. I wonder what those issues were and if they stack up with avoiding fusion.

So ~50% of the tethers broke but still we have 76% of the patients avoided fusion. Given the fusion avoidance rate, so what that some tethers broke?? I assume they needed another minimally invasive procedure to put another tether in. I am not minimizing surgery here but I am guessing a tether replacement is less trauma than an initial placement and far less than a fusion.

Someone correct me if I'm wrong but I think 76% fusion avoidance is better than staples and we are just at the beginning here. Some Achilles Heel may present at some point like in H rods but so far it's looking pretty good in my opinion.

I know I don't know what I'm talking about. This is just spitting in the wind.

Pooka1
02-25-2017, 09:51 AM
Dr. Lenke did also indicate I would have osteotomys done from TII- L2. My fusion would be 6 levels, T10-L3. Is this common to have osteotomys with fusion? I wonder how tethering would work with not doing this? Again so many questions I just don't understand. I have read on the other forum that some of the tether Dr's do disk release. I have been in contact with others who have had this. It seems to work for those who have had it. I would think based off what I've read there have been several hundred cases done.

Linda may know about how common osteotomies are with mature adult fusions. Other than in congenital scoliosis, I doubt many are done in kids.

Lonner may do osteotomies with the tethering. Did he say he wouldn't? Maybe you have to fuse if you do osteotomies and tethering is then not an option. Who knows.

So some patients have had disc release with tethering? Young patients? Are they congenital cases as opposed to idiopathic?

What have you read to indicate there are several hundred cases. I read a recent web site that indicated about 200 or so but maybe it is more by now. I don't think it can be much more given the lack of podium presentations on it at the meetings as Linda mentioned. Stapling had a bigger roll out if I recall correctly and I probably don't... this is not my field and I don't keep up with this literature.

When the FB people come here they tend to be vague on numbers of patients. They will talk about tethered mature adults (plural) but it is really just one person as far as I know.


Sharon, I am planning on asking about the Sagital plane and any other important questions I can compile.

I will be very interested in how Lonner handles that question. And whether he will do any osteotomies with the tethering.

LindaRacine
02-25-2017, 02:09 PM
Linda, can you please sende the link on my type of fusion outcome? Also, when you had your second fusion, how do they fuse to what you've already had done? I know this will be my case if I am fused and I'd like to understand a little more how a revision works with outcomes.

Hi Kay...

There are hundreds of papers on the outcome of fusions for scoliosis. You can do a search HERE (https://www.ncbi.nlm.nih.gov/pubmed/).

If a fusion is solid, they don't refuse it unless they need to realign the spine at those levels. In that case, osteotomies are done, and the levels are fused in the new configuration. For example, in the images below, you can see from the xray on the left, that the patient is significantly pitched forward. Using a pedicle subtraction osteotomy technique (shown in the drawings on the left), they were able to get the patient standing up straight again. In that example, they would have cut through a prior fusion, closed the osteotomy by pulling the 2 ends of the cut vertebrae, and refusing.

https://www.srs.org/images/patients-families/conditions-and-treatments/posterior_osteotomy.jpg


--Linda

Kay1974
02-25-2017, 05:06 PM
Sharon,
I believe you mentioned something of a concern with tethering and it causing hypo kyphosis? After seeing my Scroth PT today she said most of her scoliosis patients have a little more of that in the thiracic back and of course with my weird rt lumbar curve, I am a little opposite of that and have hyper kyphosis and am also hyper lordosis.

I'll try and post pictures later of my side views to show.

Pooka1
02-25-2017, 06:08 PM
I would not say it is a concern. It is a question I have that can hopefully be answered by Lonner. If tethers hypokyphose then that would be good if you are starting with hyperkyphosis and lordosis presumably. We don't know if any of this is right until you ask Lonner.

Kay1974
02-25-2017, 07:07 PM
Yes, hopefully he can answer my questions if I am someone he'd consider after the DEXA scan.

titaniumed
02-26-2017, 01:08 PM
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."

Damn....

Less than ideal outcomes and tether breakage in 50%

I’m sorry, but this is not exactly a glowing report......and makes it hard to justify acceptance among surgeons.....(smug face)

This also makes for a difficult patient surgical decision....If I knew the tether was going to break in a few years, I don’t think I could or want to submit.

We should have a vote on it from all the post surgical members here. “Is mobility worth more surgery?” This is also an age related question and should probably be grouped by age.

Can you endure more anesthesia?

Ed

Pooka1
02-26-2017, 02:24 PM
Ed, I can't answer for my daughters but I would bet my bank account they would go for tethering their unfused lumbar should they ever be faced with having to extended their fusions down into the lumbar. And I would not be surprised if they opted to keep having broken tethers replaced the rest of their lives if it avoided a lumbar fusion.

In stark contrast, if I were back at the time signing on the dotted line allowing my daughters to be fused, I would not have agreed to tethering them. That is because as far as I can tell, the tether probably doesn't allows noticeably more ROM versus fusion in the T4-L1 range. We have out year data for fusion whereas tethering is still highly experimental at the moment.

I can ask Frick and Frack and see what they say.

titaniumed
02-27-2017, 03:20 AM
Sharon,

I wouldn’t sign either. The whole purpose of the Magec system was to avoid repeated surgeries in kids. If repeated surgeries were that easy, it wouldn’t be a problem, but it is a problem for multiple reasons. Surgeries are one thing and repeated surgeries are another.....I would not take this lightly. It multiplies the odds for complications and it changes the equation. Anesthesia related complications are things that are not discussed often, and can be extremely difficult to deal with.

Melisse

You realize that things have changed with the new information.....Your requirement of 3 osteotomies which indicates a kyphosis component, and the “less than ideal” SRS tethering data and conclusion.

I don’t see how they could tether especially with the osteotomy requirements? and if they could, what would be the advantage? Your projected fusion is short and will hardly affect mobility.

I am sorry but with this information, I would not pursue tethering.

Ed

Pooka1
02-27-2017, 08:10 AM
Sharon,

I wouldn’t sign either. The whole purpose of the Magec system was to avoid repeated surgeries in kids. If repeated surgeries were that easy, it wouldn’t be a problem, but it is a problem for multiple reasons. Surgeries are one thing and repeated surgeries are another.....I would not take this lightly. It multiplies the odds for complications and it changes the equation. Anesthesia related complications are things that are not discussed often, and can be extremely difficult to deal with.


I get your point. I guess it depends on how often the tether breaks. If since inception, they are looking at ~50% in, what?, 3 or 4 years, that is significant. I don't think it is feasible to replace the tether with that frequency.

The other thing is another HUGE reason why I would not agree to tethering my daughters thoracic spine is that the key to avoiding extension into the lumbar (besides not having to fuse past T12 or L1) is driving the most straightness of the unfused lumbar by correcting the T curve as much as possible. That is according to Boachie and our surgeon. If the tether wasn't guaranteed to straighten the T curve as much as fusion in a given patient then I don't think it is in that kid's best interest to be tethered. You may have slightly more ROM but it may come at the expense of needing either fusion or more tethering of the lumbar. I would NEVER agree to that unless I got that guarantee the tether would straighten as much as segmental instrumentation. I wonder how many parents who are okaying tethering of T curves in their children are aware of this issue.

They may be winning the battle but losing the war.

burdle
02-28-2017, 05:21 AM
I get your point. I guess it depends on how often the tether breaks. If since inception, they are looking at ~50% in, what?, 3 or 4 years, that is significant. I don't think it is feasible to replace the tether with that frequency.

The other thing is another HUGE reason why I would not agree to tethering my daughters thoracic spine is that the key to avoiding extension into the lumbar (besides not having to fuse past T12 or L1) is driving the most straightness of the unfused lumbar by correcting the T curve as much as possible. That is according to Boachie and our surgeon. If the tether wasn't guaranteed to straighten the T curve as much as fusion in a given patient then I don't think it is in that kid's best interest to be tethered. You may have slightly more ROM but it may come at the expense of needing either fusion or more tethering of the lumbar. I would NEVER agree to that unless I got that guarantee the tether would straighten as much as segmental instrumentation. I wonder how many parents who are okaying tethering of T curves in their children are aware of this issue.

They may be winning the battle but losing the war.

In summary is this discussion - holding the curve (vbt) versus straightening the curve ( fusion)

Pooka1
02-28-2017, 07:51 AM
In summary is this discussion - holding the curve (vbt) versus straightening the curve ( fusion)

That strikes me as a distinction without a difference, Burdle.

The lumber, if it is just compensating for a structural T curve, tends to come to match whatever the new configuration of the T curve is. The spine seems to balance itself at least in the saggital plane. I assume a T curve that is straightened and then held by a tether will drive the same straightness into the lumbar as a fusion causing that level of correction would.

Of course I have no idea what I'm talking about. Only the surgeons who do these ops and perhaps some of the patients would know the answer to this.

The issue of 50% breakage in a few years is amazing to me. We can put a man on the moon and we can't find a material that won't break in a spinal tether? Ed???

burdle
02-28-2017, 08:08 AM
That strikes me as a distinction without a difference, Burdle.

The lumber, if it is just compensating for a structural T curve, tends to come to match whatever the new configuration of the T curve is. The spine seems to balance itself at least in the saggital plane. I assume a T curve that is straightened and then held by a tether will drive the same straightness into the lumbar as a fusion causing that level of correction would.

Of course I have no idea what I'm talking about. Only the surgeons who do these ops and perhaps some of the patients would know the answer to this.

The issue of 50% breakage in a few years is amazing to me. We can put a man on the moon and we can't find a material that won't break in a spinal tether? Ed???

Do we know if Tethering a thoracic helps a structural lumbar curve? Or would the tether just go down to lumber levels? How do you know the teher is broken? with the speed that a curve can progress and the time between appointments there could be a while before anything amiss is noted?

Pooka1
02-28-2017, 08:22 AM
Do we know if Tethering a thoracic helps a structural lumbar curve? Or would the tether just go down to lumber levels? How do you know the teher is broken? with the speed that a curve can progress and the time between appointments there could be a while before anything amiss is noted?

I think I have seen radiographs of a tether on the right to hold a T curve and another tether on the left to hold a L curve. So they will tether two structural curves separately and on opposite sides because the tether goes on the convex side.

I saw a radiograph of a putative broken tether. The anchors are splayed apart at one level and it doesn't look like the radiograph taken immediately after tethering.

I just have to say that there was a podium talk about this at last year's SRS meeting. This breakage issue must be known to the people who come on here talking about it from the FB group yet they never mentioned it. I am trying to decide if that is honest.

Pooka1
02-28-2017, 08:30 AM
http://srs.gmetonline.com/ViewPresentation.aspx?subscriptionpackageid=12

SRS tethering presentation 2016

They suspect it on the basis of increased screw angulation.

Pooka1
02-28-2017, 08:37 AM
In some other talks, they discuss the issue of driving straightness in the lumbar and that it seems connected to thoracic kyphosis. If tethers don't preserve the T kyphosis I wonder if that will drive more problems in the lumbar in the out years that might have been avoided if the kyphosis was preserved with segmental constructs.

It is going to take a long time to see if these short terms wins come with long term losses.

Kay1974
02-28-2017, 09:27 AM
Hi Sharon,

I did not see the article with your attachment. I personally have a main TL curve and with tethering offered to me, it would only be on 5 segments so it would be considered a single tether. I have seen double tethers also.

I plan on asking Dr. Lonner many questions when I can get an appointment with him. He told me personally none of his tethers have broken so far. I have no idea how many he has done either to date. The tethers I have heard of breaking, only break off at 1 segment not the entire tether and I do not believe there has been more than 1 segment break on anyone. I have no article to back that up though as I really don't know where to look for all that detail information like some of you on here. I believe I heard about 1 particular Dr. that had some break half the time off the west coast but not sure on that.

As far as fusion goes, what is the average these things last on someone like me? The frustrating part of this, is that I don't understand where my pain is coming from and by doing fusion, how does that make it go away. Most of my pain and burning is all in my rt butt area. Just by jacking up the spine, just makes it go away?

So many questions and no clear answers either way.

titaniumed
02-28-2017, 09:39 AM
The issue of 50% breakage in a few years is amazing to me. We can put a man on the moon and we can't find a material that won't break in a spinal tether? Ed???

I believe UHMW and PET are biomaterials.....I don’t know if there are flaws in the material structure itself???

I wonder where they are failing? I would imagine at the attachment point.....

Usually upon failures, it would be logical to increase diameter by 10%. But that changes everything since you are basically restraining a coil spring on one side. This is not a simple problem.

But then Elon Musk keeps trying to land his rockets on moving barges out in the ocean. Those SpaceX guys are going to get it nailed. (smiley face)

Ed

KathyInIowa
02-28-2017, 06:57 PM
As far as fusion goes, what is the average these things last on someone like me? The frustrating part of this, is that I don't understand where my pain is coming from and by doing fusion, how does that make it go away. Most of my pain and burning is all in my rt butt area. Just by jacking up the spine, just makes it go away?


Hi, Melisse. I'm certainly no expert but will tell you what I think made my pain go away. I had similar pain as you in regards to the butt & leg pain, but I also had NAGGING low back pain for years, with what felt like a knife stuck in my back on the left side where my curve was bad. But, I also had the burning pain down the left side of my back that went through my butt cheek, over my hip, down my thigh, to the outside of my calf and to the bottom of my foot. I used to say "If I could cut out the lower left quadrant of my body, I'd feel fine." After my surgery, all of that was gone. So, I think that the pain is caused by pinched nerves from the curves and/or bulging discs, stenosis, etc and then movement which was rubbing bone on bone as well as irritating the nerves. Once they straighten the spine, fuse the spine, and it can no longer move - then the pain from movement goes away & the pinched nerves have been decompressed. So, in theory, the reasons for the pain have all been stopped. This is, of course, best case scenario. I still have compensatory curves in my upper spine - so of course I worry what the future hold there.....

I think you and I have similar curves, my was 42* lumbar and something like 30* thoracic. But, you are younger and was diagnosed younger - mine was an adult degenerated lumber spine which then caused the thoracic spine to curve. We are different in that way.

The truth in my mind is that it's really all a mystery!! I'm not sure I really know anything!

Kathy

LindaRacine
02-28-2017, 07:20 PM
I believe it's typically the process of making more room for nerve roots, and stopping motion that resolve pain.

titaniumed
03-01-2017, 12:32 AM
He told me personally none of his tethers have broken so far.

Melisse, This is highly possible because the studies that Linda posted were from patients from years ago. I couldn’t see them continuing without addressing the breaking problem. If they corrected the problem and continued, we would have to wait for an updated conclusion. I wonder how long Dr Lonner has been tethering?

When I addressed my surgeries I wanted “one stop shopping”. I think that it is important to bring this up.

Below is an article by Dr Boachie. He talks about spine problems in adults....and covers it well. This guy is a master of scoliosis...
https://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp

Ed

Pooka1
03-01-2017, 07:23 AM
Melisse, This is highly possible because the studies that Linda posted were from patients from years ago. I couldn’t see them continuing without addressing the breaking problem. If they corrected the problem and continued, we would have to wait for an updated conclusion. I wonder how long Dr Lonner has been tethering?

When I addressed my surgeries I wanted “one stop shopping”. I think that it is important to bring this up.

Below is an article by Dr Boachie. He talks about spine problems in adults....and covers it well. This guy is a master of scoliosis...
https://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp

Ed

Maybe Melisse should ask Lonner HOW they solved the breakage problem if it has been solved. Lonner will know this.

leahdragonfly
03-01-2017, 07:46 AM
When I addressed my surgeries I wanted “one stop shopping”.
Ed

Melisse,

I wish you luck and strength in finding the right decision. There are no guarantees with any of these surgeries, no matter what your surgeon says. I got a second opinion that offered a small, two level fusion for pain reduction that sounded pretty attractive for about a day, but upon really pressing the surgeon he said I would still need a long fusion in a couple years. I decided to skip the small surgery and go straight for the inevitable larger fusion. I thought I was picking one-stop shopping too. I can't imagine where I would be if I'd chosen the supposed easier road of the smaller surgery, but I have a feeling it would have been a disaster. Amazingly I am essentially pain free after my three surgeries in 5 years, but I can not overstate the extreme toll of multiple surgeries, especially unplanned ones due to hardware breakage. The body heals more easily than the mind and emotions after multiple, unplanned surgeries, no matter how tough you are. Just a word of caution from someone who has been there.

titaniumed
03-01-2017, 09:03 AM
Maybe Melisse should ask Lonner HOW they solved the breakage problem if it has been solved. Lonner will know this.

I agree, very good idea....

Ed

Kay1974
03-01-2017, 11:55 AM
Kathy,

That's great that the fusion was so helpful to you in that pain that I can relate to. Mine is all on that right side, due to that severe rt sided lumbar curve I've carried since 12. I thought my curve was 42 as in December I had xrays and now 2 months later, Dr. Lenke said it was a 56 degree TL curve, atypical. I guess I'm upset about that number but it doesn't matter, I realize it will grow and only keep damaging and causing more pain. My local GP feels I should keep waiting as the surgery is no guarantee and who knows how I will be afterwards. Will it be worth it to do it now or not? No one knows.

Gayle, I appreciate your response. Dr. Lenke never mentioned a long fusion, I wonder why not? I look at my curve and think maybe it should be longer. I have moments when I'm not so strong and really fear this. I have a daughter and a husband and full time job and try to stay focused with all this Scoliosis education and making the right and best decision for us but it's just not easy.

Ed, you mentioned one stop shopping. Yes, I would love to be a one and done. But realize everyone hopes that too and it's not the case for many. I will ask Dr. Lenke why he didn't offer a long fusion and maybe into the pelvis. Maybe my catscan will offer him more clarity also? Is t a short fusion more likely to break than a long one? To me, it seems more likely but I'm no expert.

Thank you all who have been before me for your support.

Melisse

Kay1974
03-01-2017, 03:34 PM
These were my x-rays from Dec. 2016.
193219331934

TXMom
03-01-2017, 11:45 PM
These were my x-rays from Dec. 2016.
193219331934



This is Sheryl in Texas. I am having T9 - Sacrum done on March 21 and 23. I looked at your x rays and then at mine. Your curve is much more severe than mine, yet you are only getting fused five levels. I say "only". HaHa! Not to minimize that at all. A fusion is a fusion. I totally understand how you feel -- the tears, the disbelief that this really has to/is happening. I have been there. On my x rays, the spine starts leaning at about the fourth rib. I don't know what this means. It leans and leans, and then starts a pretty darn decent curve (don't know the numbers) at just above my waist. I don't know what my x rays mean other than I'm crooked. Ha!

I understand your fear and your pain. Your pain is very similar to mine. Mine starts from the above waist area down into my feet/toes. It never goes away either. My surgeon tells me that the pain is caused from the pinched sciatica and the curve, and degeneration. From what you describe, your pain would be nerve related as well. Like you, I suffered from low back pain for years before anyone bothered to do standing X-rays or a full spine MRI. The doctor thinks that this has been going on for "a very long time". To me that translates to years. I have no clue as to whether I had scoliosis from childhood or what. I know that my mother was told that I had slight scoliosis and that is what I was told about my daughter. If I had known then what I know now, I would have taken my daughter in for X-rays right then and there. She is now 35 and I can see the difference in her clothes, from one side of the back to the other. I am going to press her into a doctor visit, if that works. After all, she is 35! I just don't want her to go through this at age 60!

I am glad to know that you are having surgery, and I surely hope that this cures you. :) We will have to report back here and let folks know how we are doing. Obviously, I can report back first. I'm not sure if that's good or bad. LOL. I am trying to get as much done as possible, around here, as I realize that I won't feel like much for a while afterwards.

How are you preparing for the surgery, so far?

I will be keeping you in my prayers as well.

Let me know more when you get a chance to post. I wish you much success and obviously, to be pain free. I wouldn't wish this dang nerve pain on anyone, that is for sure. I am so sorry that you are going through all this. I hope that you have a support system. Well, that is it for now. I'll be back tomorrow or the next day to check on folks. :)

Sheryl, TX Mom

Kay1974
03-02-2017, 08:19 PM
Hi Sheryl,

Thanks for your post. I am glad to hear you have a great plan in play and will soon be relieved at all that pain. It is frustrating to have scoliosis, soamy aches and pains that stem from it, not to mention the unbalanced feeling with it. I've always felt that part of it from being a kid.

I pray everything goes well for you and will be following along eventually to have surgery. I just found out I have osteopenia in my spine so not real sure if that will halt treatment for a while... I wouldn't be upset, I'm just not at peace yet but will continue to pray and ask for guidance. This is the biggest thing I've ever dealt with. I've had several surgeries in the past but none like this will be.

Hugs to you from your neighbor in Louisiana:)

TXMom
03-06-2017, 02:14 AM
Hi Sheryl,

Thanks for your post. I am glad to hear you have a great plan in play and will soon be relieved at all that pain. It is frustrating to have scoliosis, soamy aches and pains that stem from it, not to mention the unbalanced feeling with it. I've always felt that part of it from being a kid.

I pray everything goes well for you and will be following along eventually to have surgery. I just found out I have osteopenia in my spine so not real sure if that will halt treatment for a while... I wouldn't be upset, I'm just not at peace yet but will continue to pray and ask for guidance. This is the biggest thing I've ever dealt with. I've had several surgeries in the past but none like this will be.

Hugs to you from your neighbor in Louisiana:)

Hi Melisse!

Big Hugs to you from Texas! Perhaps we will meet sometime with new and straightened and pain free backs! :)

Thanks so much for your well wishes. I am now down to two weeks and counting down. I don't want this surgery, but I have to have it. I have gotten worse in the last two weeks. Unlike you, I have only known about this scoliosis since October. I am so sorry that you have suffered for so very long with your scoliosis. Life isn't fair sometimes, is it? I will be praying for you for everything to be successful and for you to not have any pain any more. Please do pray for guidance, and I promise you that you will get it. I understand that this is the biggest thing that you have gone through. For me, it is the second biggest, but the biggest physical pain that I've ever gone through. I do understand. Ed and Linda are such big helps, so please keep praying and also reaching out to them. They sure know a lot! :). There are so many nice people on this board. I'm glad that it's here for us.

I'll keep you posted before my surgery time. After that, it will depend on how cognizant I am of anything. HaHa! Not funny, but probably true.

Blessings,
Sheryl

txgal
03-06-2017, 06:49 PM
I am exploring the possibility of VBT as well, as a 52 year old. My surgeon told me I would need to be fused T3-sacrum and he was not recommending it. Too drastic for my 42 degree curve. So I'm gathering my MRI and X-rays and going to send them to the surgeons doing the procedures. I have already been in touch with their staff. Nothing to lose. A lot to potentially gain. Not sure if I'll be a candidate, but I do bend to 8 degrees. I'm older by a bit then the two sisters who have had VBT. But to me understanding, they are both pleased with their outcomes.

burdle
03-07-2017, 07:50 AM
I am exploring the possibility of VBT as well, as a 52 year old. My surgeon told me I would need to be fused T3-sacrum and he was not recommending it. Too drastic for my 42 degree curve. So I'm gathering my MRI and X-rays and going to send them to the surgeons doing the procedures. I have already been in touch with their staff. Nothing to lose. A lot to potentially gain. Not sure if I'll be a candidate, but I do bend to 8 degrees. I'm older by a bit then the two sisters who have had VBT. But to me understanding, they are both pleased with their outcomes.

I have 3 curves which is why any surgery would be from top to Sacrum- is yours a large thoracolumbar?. And is it a structural curve? From what I can tell the ladies who have had VBT had de Novo scoliosis and not Idiopathic Scoliosis but I am not sure. Chriros do not mention the difference but a surgeon should,.

I would be very interested in what the VBt guys say to you

Kay1974
03-07-2017, 08:50 AM
Burdle,

I am no expert on tethering but I also have 3 curves, I have adolescent idiopathic Scoliosis and am 42. You should join that tethering site, I would love to see someone like you ask all the questions you ash here. You could very well be a candidate once understanding and learning on that site just like me. I do have osteopenia so not sure if I'm ruled out yet.

They are tethering many people with compensatory curves and structural. If anything, I haven't seen any cases of tethering on denoco curves.

Thanks,
Melisse

Pooka1
03-07-2017, 10:11 AM
It might be worth asking if they can at least tether the lumbar if they fuse the thorax. I am hoping that becomes an option if my daughters ever need an extension of their T fusions.

Kay1974
03-07-2017, 10:56 AM
I've seen several xrays on that site of people that had hybrids done where they had thoracic fusion and then feathered the Lumbars.

Kay1974
03-07-2017, 10:57 AM
**teathered

Kay1974
03-07-2017, 11:30 AM
Texas girl,
Are you on the teatgering site? I just joined also a month ago or so. I hope your a candidate. It seems there have been atleast 500 done and showing promise. I am learning as much as I can but think Dr AbC and Dr Lonner are who to see as an adult.

Kay1974
03-07-2017, 11:32 AM
Also, why would you need to be fused to the sacrum with that size curve? Mine is larger and I was told 6 levels to fuse. That has me worried now that that may not be enough. I don't see too many folks with such short fusions. I'm wondering if that would hold me or break.

Pooka1
03-07-2017, 12:52 PM
Texas girl,
Are you on the teatgering site? I just joined also a month ago or so. I hope your a candidate. It seems there have been atleast 500 done and showing promise. I am learning as much as I can but think Dr AbC and Dr Lonner are who to see as an adult.

Where is the information that at least 500 have been done?

Also is it still only two mature adults who have been tethered? That is are all but 2 tetherings in growing kids or young adults?

Kay1974
03-08-2017, 10:24 AM
Sharon, it's all on that VBT site via Facebook.

You should join to learn about it as it sounds like 1 daughter of yours may or may not have lumbar issues one day. if my daughter ever were to need this, I would definitely seek it out for her. It's really looking promising for certain people.

Pooka1
03-08-2017, 11:28 AM
Sharon, it's all on that VBT site via Facebook.

You should join to learn about it as it sounds like 1 daughter of yours may or may not have lumbar issues one day. if my daughter ever were to need this, I would definitely seek it out for her. It's really looking promising for certain people.

When some folks come here from the FB group, there is a touch of arm waving and lack of rigor. I would like to know HOW they know it is 500 or if that is just some layperson's "feeling".

I am on enough groups. I am not going to join the tethering group until I need to do so. I am hoping that day never comes.

Kay1974
03-08-2017, 12:10 PM
Yes, it would be nice to see actual numbers on some sort of report by the government or something but no, I have not seen that. I would think the actual numbers would be reported somewhere but I do not know where to look and I don't like taking others "feelings" about it either so I'm sorry if I mislead. I'm seriously trying to find out everything I can but I'm not sure where to get actual data.

When it comes to our spines, people need to be able to make the best decision for theirself and read up on everything trying to decipher the facts. VBT must be growing but as others stated on here, it's not mainstream yet.

txgal
03-09-2017, 07:43 PM
Also, why would you need to be fused to the sacrum with that size curve? Mine is larger and I was told 6 levels to fuse. That has me worried now that that may not be enough. I don't see too many folks with such short fusions. I'm wondering if that would hold me or break.

Degeneration under my low curve. I also have 48 degree kyphosis.

titaniumed
03-09-2017, 09:57 PM
Guys, I have not been on the site for awhile due to a Phishing warning.......

Have any of you seen this warning?

If so, is something being done?

Ed

KathyInIowa
03-09-2017, 10:29 PM
I saw the warning for two days. Then it was gone & I got in. I just assumed the NSF technical people took care of it.

Pooka1
03-10-2017, 09:48 AM
The warning is still there for me on my desk top. Luckily I was already logged into the site on my tab which is what I have been using.

I suspect the hack might be the doing of a disgruntled member.

titaniumed
03-10-2017, 10:42 PM
Its still there, Its time to clean up the server....

These types of attacks are automatic and can come from anywhere on the planet. Its an automatic program. (again)

Ed

burdle
03-14-2017, 08:38 AM
I am not getting a phishing warning.

Anyway just don't click on the link.

Phishing is normally to get payment details off you and we do not give any of that info here

Pooka1
03-14-2017, 11:22 AM
I think the issue is that you have to click on something to get past the splash page and I suspect no matter what you click, it may trigger a download of malware. I am logged in on my tablet so I don't have to get past the splash page. I can't log in on my desktop because I think it is dangerous to click on anything. I close the tab out without clicking on anything. If they are hacked they need to address it.

The malware don't necessarily just stay within the NSF page. It might go out to the entire computer and harvest financial info and passwords.

burdle
03-14-2017, 12:12 PM
I think the issue is that you have to click on something to get past the splash page and I suspect no matter what you click, it may trigger a download of malware. I am logged in on my tablet so I don't have to get past the splash page. I can't log in on my desktop because I think it is dangerous to click on anything. I close the tab out without clicking on anything. If they are hacked they need to address it.

The malware don't necessarily just stay within the NSF page. It might go out to the entire computer and harvest financial info and passwords.

If its any help - don't get it in UK

gardenia
03-24-2017, 01:22 AM
But, typing with one finger is hard. Hope this get fixed soon.


I think the issue is that you have to click on something to get past the splash page and I suspect no matter what you click, it may trigger a download of malware. I am logged in on my tablet so I don't have to get past the splash page. I can't log in on my desktop because I think it is dangerous to click on anything. I close the tab out without clicking on anything. If they are hacked they need to address it.

The malware don't necessarily just stay within the NSF page. It might go out to the entire computer and harvest financial info and passwords.