Dr's appointment today.

[Pooka1]

http://srs.gmetonline.com/ViewPresen...onpackageid=12

SRS tethering presentation 2016

They suspect it on the basis of increased screw angulation.

[Pooka1]

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]

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]

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]

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]

I believe it's typically the process of making more room for nerve roots, and stopping motion that resolve pain.

[titaniumed]

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-con...l-stenosis.asp

Ed

[Pooka1]

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-con...l-stenosis.asp

Ed

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

[leahdragonfly]

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]

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]

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]

These were my x-rays from Dec. 2016.
Pic1.jpgPic2.jpgPic4.jpg

[TXMom]

Hi Melisse,

These were my x-rays from Dec. 2016.
[ATTACH]1932[/ATTACH][ATTACH]1933[/ATTACH][ATTACH]1934[/ATTACH]

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]

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]

Hi Melisse, I'm down to two weeks now.....

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