Should I wait to have surgery and do physical therapy?

[Susie*Bee]

The only two cents' worth I'll add is that once you have children, there is never a good time to have surgery until they are grown and gone, although there are many who find they just have to. As others have said, recovery when you are young is usually much, much quicker.

[JenniferG]

I'm with Susie on this. I've seen so many mothers on this forum do it really hard, recovering with kids.

[kennedy]

That would be good enough reason for me to have surgery.

[ctown]

That would be good enough reason for me to have surgery...If current technology was available when I was 30, it would have spared me from goring through life with a progressive deformity. And these deformities do indeed worsen over time. Having surgery at a younger age has so many advantages…a faster and easier recovery, most likely a shorter fusion, fewer risks for complications, and more years to enjoy a better body image.

The downside to having it now, as I see it, is that I will have to live with any fusion I get now for 40 or 50 years, and there will likely be disc problems in the lower vertebrate that will have to be fused eventually. So I may just end up having more surgery later. I don't believe this T10-L3 fusion would fix me forever. So I think the decision is between A) one surgery now to straighten me out, and probably another later in life to fix compensatory degenerative problems in the lower lumbar, or B) one larger surgery later in life, if the PT doesn't hold, after kids are grown, knowing that the recovery will be harder, the fusion will be longer, and the correction might not be as good.

Technology never stops progressing. And it is very possible that when I am 60 things will be much better than they are now: maybe they will even be able to fix things with just hardware and no bone graphs (I can hope and pray). I am not 100% sure, but because I am so uneasy about losing my mobility in the lower back, I am leaning toward option B, so I can live many more years with flexibility in tact. I can do PT to help with pain and body image, and maybe prevent some progression. It is a hard decision though. I am really interested in hearing from people in their 20s or 30s who have had these fusions.

Thanks again to everyone who responded to this thread. You're thoughts and feelings have, and will continue to be, been extremely meaningful to me.

[JamieAnn]

Cristi,

I am 4 weeks post op today, and am fused T5-L1. I was never under the impression that more surgery later is guaranteed. Obviously I understand it is possible though. Where did you hear/learn that this was definite??

Best of luck in your decision.

Jamie

[ctown]

Hi Jamie Ann,

The evidence is mostly anecdotal based on the "cases" I've read by people on the forum, the suggestions of people earlier in this thread, the fact that Dr. Gupta said we would have to watch the regions above and below the fusion to see if degeneration or compensatory curves occur, and also just intuition. I would be asking a lot of the few vertebrate below the fusion for the next 40-50 years. But degeneration might happen without the fusion too, perhaps depending on how much progression happens (though if I do PT everyday for the rest of my life I might not see that much progression). I guess my gut tells me that at some point, I would need probably need some kind of revision, probably in the lumbar region. This might not be an issue for people who are having full fusions to sacrum.

[ctown]

Also, and I am by no means an expert so maybe more knowledgeable folks can let us know: do lumbar fusions usually see more revision surgery than thoracic? Jamie Ann has a thoracic fusion. Maybe she doesn't need to be as concerned about revision?

[JenniferG]

Is there a possibility of C) One long fusion now, to get the best possible correction while you're young, and avoid the possibility of another surgery later in life.

I don't know enough about it, but have you thought about C)?

[hdugger]

Also, and I am by no means an expert so maybe more knowledgeable folks can let us know: do lumbar fusions usually see more revision surgery than thoracic? Jamie Ann has a thoracic fusion. Maybe she doesn't need to be as concerned about revision?

Yes, lumbar fusions see more revisions. I think the magic cutoff is L1. If the fusion ends there, there mostly isn't degeneration below that point. But if it ends below there, there mostly is.

But (and I don't know this for sure, because my son's curve is thoracic), I think there's also more likely degeneration with a lumbar curve even if it isn't fused. That's the "working" part of the spine, and even totally straight spines see some degeneration in that area. If you put extra pressure (either curves or fusion) I think that area degenerates more.

[Pooka1]

Cristi,

I am 4 weeks post op today, and am fused T5-L1. I was never under the impression that more surgery later is guaranteed. Obviously I understand it is possible though. Where did you hear/learn that this was definite??

Best of luck in your decision.

Jamie

I can repeat what I was told by our surgeon with the caveat that other surgeons might disagree and nobody may actually know the straight dope given how variable the underlying condition is as well as the trajectory after fusion...

Fusions that end at L2 or above are not expected to need extension into the lumbar even in kids who have to live with the fusion most of their life. He did not quote me anything about needing anything above the fusion but told me the T4-L1 fusion in my kids is "one-stop shopping" and that they are not expected to need any more surgery for scoliosis or sequelae in their life. So I further take from that that they are not expected to develop problems above the fusion like proximal junction kyphosis. Note that "not expected" clearly doesn't mean "impossible."

I don't know if it is the same deal with adults but I would be shocked if it wasn't.

[Pooka1]

But (and I don't know this for sure, because my son's curve is thoracic), I think there's also more likely degeneration with a lumbar curve even if it isn't fused. That's the "working" part of the spine, and even totally straight spines see some degeneration in that area. If you put extra pressure (either curves or fusion) I think that area degenerates more.

I read an abstract recently wherein they were claiming that degeneration in the lumbar below either a fusion or an unfused curve was not distinguishable against the huge propensity for degeneration in the general public. That is not the paradigm as far as I can tell. Plus, as a reseach report, it is most likely false.

[CHRIS WBS]

Technology never stops progressing. And it is very possible that when I am 60 things will be much better than they are now: maybe they will even be able to fix things with just hardware and no bone graphs (I can hope and pray).

Just goes to show how different we all are. As a young woman, I hated being deformed. If I could have had this taken care of back then with current technology, I would have been elated. I’ve seen some awesome transformations here by some very talented surgeons. I would not want to wait another 30 years while my spine continued to twist and curve just to see how much more technology may advance.

Have you consulted with any other surgeons in the Chicagoland area?

[Pooka1]

Also, and I am by no means an expert so maybe more knowledgeable folks can let us know: do lumbar fusions usually see more revision surgery than thoracic? Jamie Ann has a thoracic fusion. Maybe she doesn't need to be as concerned about revision?

As I understand it, L curves that are only partially fused need more distal EXTENSIONS than T curves but not necessarily more revisions. Linda might know but my impression from my discussion with the surgeon was that fusions that go below L2 that don't go to pelvis are a matter of time if you live long enough. But that was the case with the H rods and may be a different story with the third generation instrumentation that is being used now. Also, at some point, they may crack this nut with future generation hardware if it isn't already cracked now.

An advantage to fusion is that, barring pseudoarthrosis, there is never going to be any degeneration/pain in the fused area. So because DDD (in the lumbar) is inevitable if you live long enough, people who are fused through the lumbar in fact are the only people who escape this otherwise inevitable (like death and taxes) damage/pain.

Linda might know but I think straight revisions for all reasons and as distinguished from extensions as in the case of only fusing part of a L curve to preserve flexibility are probably evenly distributed among all fusions within the statistical noise of course.

[JamieAnn]

I agree about having this done at an earlier age. At 4 weeks post op and still recovering, I really cannot imagine being 30 years older and getting through the recovery. I really give those of you 50-60 years old a LOT of credit .

Anyway, thank you all for clarifying, you had me a little nervous there. I was supposed to be fused down to L2 and during surgery they were able to end at L1, which I am very thankful for.

Cristi, again, best of luck in your decision. I found that when I was contemplating surgery this forum helped to weigh all sides.

-Jamie

[Pooka1]

Anyway, thank you all for clarifying, you had me a little nervous there. I was supposed to be fused down to L2 and during surgery they were able to end at L1, which I am very thankful for.

Well actually when the surgeon said he may go to L2 on the second kid I told him I was concerned about what I have read about going lower than L1 increasing the chance of the need for extension. He said that no you can pretty much go down to L2 before you see a increase in the need for extension. Then the chances go up with each vertebra fused further down. This is one surgeon's opinion and I just wonder what others say. Also, I hope I am accurately presenting this. This is my recollection and present understanding absent a dope-slap from Linda or Toni or someone.

Still, when my kid went back to do the bending films to determine the lowest instrumented vertebra (one factor among others used in that determination), I told her to bend absolutely as far as she possibly could so as to hopefully bring L2 to level. She must have done so because he only went to L1 but made the final decision on the table. She bent that L curve out to 4* from a 38* (-34*) so I'm guessing she gave it her all. The other kid only was able to bend out her L curve to 8* from a 34* (-26*) for comparison but I wasn't telling her to bend like crazy in her case. Different type of T curve so it didn't matter.