New Here, Facing Long Fusion

[Nitram]

I too wore a brace, but not quite as long as some of you. Similar to Stephanie I went about 20 years with no real problems with my back and when I started having problems things degenerated quickly...my major curve was in the lumbar region and was borderline surgical in my teens.

The surgery is no picnic Stephanie, but I could not be happier I did it.

Nitram

[Confusedmom]

Same story here. Braced two years as a young teen, Boston brace. Cleared at 25* at skeletal maturity in high school. Now 68* lumbar.

Currently waiting for surgery until my just-turned 4-year-old is in school all day. Thinking Bridwell or possibly Lenke (BTW he approved me at 68*).

Evelyn

[Mojo's Mom]

What Lenke's staff told me last week is that since he is taking over the presidency of the SRS, he will now do only curves over 75 degrees.

[mary ann]

I was about 25 degrees lumbar curve at skeletal maturity. My ortho. in Chgo., Dr. Pellicore, was excellent but is no longer to be found--- probably retired!

[Pooka1]

This:

Same story here. Braced two years as a young teen, Boston brace. Cleared at 25* at skeletal maturity in high school. Now 68* lumbar.

and this:

I was about 25 degrees lumbar curve at skeletal maturity.

With remarkable correction after the brace I thought I was done with this. Well... as it turns out, my curve in now 56 degrees

These together are the lowest Cobb angles at maturity that went on to be surgical that I have read on this group. These are very unusual scenarios if the present paradigm is correct. The 25* lumbar is especially shocking given how small it was at maturity and how lumbar curves tend to not progress as much and as often as thoracic curves. And here we have two ~25* lumbars at maturity becoming surgical.

I am just curious as to what your surgeons say about all this. I expect sheer shock from them. Based on my experience and that of others, I think virtually all parents have the understanding that if their kid is 25* at maturity (or actually less than 50*), they will never need fusion for progression. Unless you two are isolated cases (and you might be), it's pretty clear they aren't basing that on much actual data for the middle and out years.

[Pooka1]

Wait a minute, I think one of you (can't remember) already mentioned that your surgeon said it wasn't unusual to go from 25* at maturity to surgical (as a young adult?). If not one of you then there is another testimonial of someone with a pretty small curve at maturity who nevertheless was surgical as a young adult.

Apologies if you already answered.

[hdugger]

I am just curious as to what your surgeons say about all this. I expect sheer shock from them. Based on my experience and that of others, I think virtually all parents have the understanding that if their kid is 25* at maturity (or actually less than 50*), they will never need fusion for progression. Unless you two are isolated cases (and you might be), it's pretty clear they aren't basing that on much actual data for the middle and out years.

Linda quoted a paper (in another thread) that had some shocking percentage of adults developing scoliosis as they age--I think it was 1/3 in one paper and more than 50% in the other.

If that's a regular part of aging for a "normal" spine, I assume that it's also a regular thing for a curved spine, no matter how small the curve.

[Pooka1]

Linda quoted a paper (in another thread) that had some shocking percentage of adults developing scoliosis as they age--I think it was 1/3 in one paper and more than 50% in the other.

If that's a regular part of aging for a "normal" spine, I assume that it's also a regular thing for a curved spine, no matter how small the curve.

Well we're going to have to agree to AGREE on this one.

If maybe a majority of "normals" will develop scoliosis in the out years then I don't understand why ANY cases of AIS don't reach surgical territory, at least by the out years unless it is an entirely different mechanism involved.

That is, if AIS has one mechanism associated with progression and adult degenerative scolisis has another then the trajectories wouldn't necessarily match. I mean it could be like Type I and Type II diabetes which are really entirely different diseases though they are both called "diabetes."

But if both progress from even small side to side imbalances over long time periods then you might expect the same trajectories. Maybe like AIS, after a stable period of a few decades even, the progression can "take off" around a certain age, possibly related to bone health.

I think we need to see a study on AIS cases in the very out years similar to the years for the normals who developed adult degenerative scoliosis. If that doesn't exist then nobody knows what most untreated AIS does in those very out years other than documented individual cases.

[Mojo's Mom]

I will finally be getting my records from my adolescent treatment very soon, and then I will be able to tell you what my curves were at skeletal maturity.

I can tell you right now that when I was diagnosed at age 8, I was told that my primary curve was thoracic and the lumbar was a compensatory curve, but it is the lumbar curve that has always been the biggest problem. The doctors thought I had finished growing at about age 13, and cut my brace time down to just at night...then I suddenly sprouted up 3 more inches and my lumbar curve fell apart. I had to start high school back in the brace 24/7 and I was devastated.

At 17, when I finally finished growing, I can be fairly confident that my curves were at about 30 degrees, but I will confirm that when I get my records, hopefully in the next week or two.

Now, in my middle adult years, it is the lumbar curve that has been the biggest problem. I have hardly any rotation in my thoracic despite the size of the curve (just over 50 degrees), and it gives me no trouble. The lumbar curve has progressed more, is hugely rotated and causes me a great deal of pain, including nerve impingement that causes great pain in my left hip and leg.

[LindaRacine]

I will finally be getting my records from my adolescent treatment very soon, and then I will be able to tell you what my curves were at skeletal maturity.

I can tell you right now that when I was diagnosed at age 8, I was told that my primary curve was thoracic and the lumbar was a compensatory curve, but it is the lumbar curve that has always been the biggest problem. The doctors thought I had finished growing at about age 13, and cut my brace time down to just at night...then I suddenly sprouted up 3 more inches and my lumbar curve fell apart. I had to start high school back in the brace 24/7 and I was devastated.

At 17, when I finally finished growing, I can be fairly confident that my curves were at about 30 degrees, but I will confirm that when I get my records, hopefully in the next week or two.

Now, in my middle adult years, it is the lumbar curve that has been the biggest problem. I have hardly any rotation in my thoracic despite the size of the curve (just over 50 degrees), and it gives me no trouble. The lumbar curve has progressed more, is hugely rotated and causes me a great deal of pain, including nerve impingement that causes great pain in my left hip and leg.

Hi...

I'm pretty conservative when it comes to pushing kids toward surgery, but this is the one reason that surgery should at least be seriously considered in kid's with large thoracic curves. A large number of relatively benign thoracic curves turn into symptomatic lumbar curves as we age. Fusing a thoracic curve in the teens is a relatively simple surgery, and does very little to limit flexibility. A long fusion in an adult is a much bigger surgery and is much more limiting in terms of flexibility.

Regards,
Linda

[Pooka1]

Hi...

I'm pretty conservative when it comes to pushing kids toward surgery, but this is the one reason that surgery should at least be seriously considered in kid's with large thoracic curves. A large number of relatively benign thoracic curves turn into symptomatic lumbar curves as we age. Fusing a thoracic curve in the teens is a relatively simple surgery, and does very little to limit flexibility. A long fusion in an adult is a much bigger surgery and is much more limiting in terms of flexibility.

Well this is all very interesting. I didn't know that.

It concerns me because my one kid has a residual curve in her lumbar which might not be there if they fused earlier than 57* in her thorax. She must have a different class of Lenke curve than her sister who was fused when she reached essentially the same angle (58*) but has a straight lumbar now. I think they know ahead of time which fused T curves result in a straight lumbar and which result in a residual lumbar curve. If so, they need to consider lowering the surgical threshold for the curve types that result in a residual lumbar curve despite the top being perfectly straight as in the case of my one daughter. Once you are at 0* in the thorax, you can't drive any more straightening of the lumbar so the answer seems to be fuse earlier.

It would be a huge kick in the teeth if my one kid has to have an extension because of this sticking with the one surgical threshold for all T curves. The surgeon says her residual lumbar curve is stable, maybe because it is small, but I wonder how he can know that.

[jrnyc]

hi Stephanie
that is tru for me as well...my lumbar curve causes most pain...extreme pain!
i also have degenerative disc problems, spinal stenosis, listhesis, hypokyphosis, rotation, and spinal arthritis...
do you know if you have disc problems in lumbar area adding to your pain????????

i get botox injections in thoracic area for pain...it works! it freezes the muscles so they cant spasm...unfortunately, it didnt work when we tried it for lumbar...nothing much has worked for that! i've tried epidural...which worked for siciatica only, (then wore off and left injection site pain), nerve ablation, facet block, sacroiliac joint injections, and probably a few other injections i may be blocking out!
several of the treatments worked for 2-4 weeks tops...i was grateful for any relief i got, but it wasnt enough to make it a realistic treatment for any length of time!

i need surgery T4-pelvis, but all the surgeons agreed to compromise with T11-pelvis..cant bring myself to decide...yet...

hope you feel better...
jess

[Mojo's Mom]

Jess,
A lumbar MRI showed only slightly bulging discs but no herniations, and generally mild degenerative changes...and mild narrowing of the channels the nerves pass through in vertebra at L5 and S1, which is apparently causing the really severe pain I get.

I am pretty determined to do nothing invasive like injections, having seen how limited their success is. I've tried chiropractic, acupuncture and massage therapy, nothing helps a great deal. The massage therapy does limit the muscle spasm, at least. And exercise helps, although I can't walk any distance at all anymore. I do my elliptical trainer, that for some reason doesn't hurt, and I swim. It always helps. And I stretch a lot.

Ironically, my parents always told me how "lucky" I was to have avoided surgery. My father was terribly concerned about my having a long scar on my back, but apparently he never saw the internal scars from the 9 years of wearing the Milwaukee brace. He didn't live to see my back fall apart, either.

[jrnyc]

hi Steph
in NYC, massages cost over $90 an hour! i have actually found the botox injections to be the best for stopping spasms...because frozen muscles cant move (thus some famous faces on TV that look frozen ) and medical botox is covered by health insurance (cosmetic is not!)

i, too, am terrified of the surgery, especially to the pelvis!
i am not so much scared of the pain during healing...but of the chance of having new/other/permanent pain after healing is finished....

jess

[Ballet Mom]

These together are the lowest Cobb angles at maturity that went on to be surgical that I have read on this group. These are very unusual scenarios if the present paradigm is correct. The 25* lumbar is especially shocking given how small it was at maturity and how lumbar curves tend to not progress as much and as often as thoracic curves. And here we have two ~25* lumbars at maturity becoming surgical.

I am just curious as to what your surgeons say about all this. I expect sheer shock from them. Based on my experience and that of others, I think virtually all parents have the understanding that if their kid is 25* at maturity (or actually less than 50*), they will never need fusion for progression. Unless you two are isolated cases (and you might be), it's pretty clear they aren't basing that on much actual data for the middle and out years.

According to Dr. Douglas Orr , the lumbar curves are the MOST likely to progress as an adult. I'm posting a very interesting interview with him over in the adult section. He also mentions smoking as a factor for progression in adulthood....twice! Who knew?

According to the Weinstein/Ponsetti study that followed patients after an average of forty years, only one out of thirteen patients with a lumbar curve under thirty degrees progressed, so it is not very common.