what is the chance of developing abnormal kyphosis after surgery?

[LindaRacine]

Linda, hoping you see this...

I posted my last reply to you. in a cross-post while you were getting ready to put up the second Washington U review of PJK and I confess I'm COMPLETELY confused.

First, my comment only applies to the first study.

Second, you say that all your (first three) links including the first PJK link were of a revision cohort.

I must have finally burnt out on all this, but I have tried to reread both of them, and I don't see anywhere it says the first one is a population of revision pts.

Also (and this is more embarrassing) I can't really tell them apart meaningfully . . I'll try to reread them when less is going on here, but meanwhile, I wonder if you can supply any simple pointers as to what their different purposes and conclusions were.

Flummoxed utterly

Amanda

Sorry, I wasn't clear. On the first one, I think I was simply thinking about the 3 patients being out of the patients who had revision (3 out of 58, or 5%), and not 3 patients out of 643.

It's impossible to know for certain how the WUSTL or UCSF stats compare to other surgeons or centers. I would guess their rates are lower, but I don't know that for certain. Something to remember is that both WUSTL and UCSF treat far more difficult cases than other centers, so their complication rates are bound to be higher.

As I said previously, there are an awful lot of us with PJK, but I think most of us are unlikely to find it bothersome enough to actually have it fixed.

Be careful about trying to learn too much about all the potential complications, as you may go into overload. There are some horrible things that can happen during this, or any big surgery. For adults, the percentage of people who have complications (both short-term and long-term) bad enough to require additional surgery is probably somewhere in the neighborhood of 25-30%. (That's just a guess.) What you really need to think about is that if you're one of the people who have a really bad outcome, statistics are totally meaningless. That's why I think it's very important to know that, as an adult, one better be damn sure that one has thought long and hard about it being the right choice, before signing up for surgery.

--Linda

[Sharon C]

Hey, Jess!

Kind of you to reply.
Really, pain is not my main issue. Apparently, I'm told, I have a very high pain threshold (at least physically; the wine takes care of the rest But now I'm getting lower and lower to the ground to acommodate the ever increasing curve of my upper spine, and it's not only uncomfortable, it's emotionally debilitating. I feel like a leper, freak, 20 year OLDER lady than I am. I want to enjoy my vacation by the beach with my husband and walk a mile without a cane. Hell, I'd like to walk a BLOCK without a cane. I know I am very fortunate and there are those worse off than I am, but this is MY life and I think it can be better and I am ready to explore my options. The alternative is to hunch over, moan and groan and be miserable. Not a life worth the trouble, in my humble opinion. I'll keep you all posted about what I decide and the results. In the end, I guess, we all just need to find a doc we basically trust, comes with some decent references, and also fits into our financial capabilites. Too bad we can't all ship off to Paris, NY, or wherever to employ the "surgeon to the stars," but that's not my reality. So, I'll be realistic, hopeful, and maybe even a little lucky, and stand straight and tall and all without a walker, cane, or the hand of a loved one; though that's always a plus
Sharon

[LindaRacine]

Well, I recently posted on the revision portion of this site about my worsening kyphosis after 5 years. I was 54 at the time of my surgery, and was fused A/P from T-5 to L-4. I am now wondering if it wouldn't be wise just to fuse all the way up, but I guess that's not how it's done, and perhaps with good reason. Why anticipate trouble before it actually occurs? I just saw my surgeon for the first time in over 2 1/2 years a couple of weeks ago. Unfortunately, the x-ray folks weren't there, so I had to get those later and will see Doc again on July 2nd. To my untrained eye, my kyphotic curve looks very much worse than those years ago. I feel it everyday as I try to stand and have to fight my neck to keep my head erect. I suspected from comments on this site that I might also have saggital imbalance, but Doc doesn't think so. I would be delighted if I only have to deal with the "upper" surgery and only one means of entry, as opposed to the alternative. Thanks, Linda, for the informative studies, though it's amazing I could muddle through all the "shop talk." I was wondering if the "blame" if there is any, needs to be placed upon the surgeon, or if the nature of the beast is such that there are so many variables in a surgery this complex that one has to shoot one's best shot and hope for the best. My husband and I suspect the latter. At this point, I just want to be able to walk upright comfortably again, and I'm willing to endure whatever it takes to accomplish that, as I am unable to accept that my current physiology is what I will be stuck with forever.
I am so grateful for this site and everyone herein!!!!

Hi Sharon...

I think there's probably a big difference between the best surgeons and the worse surgeons. Picking the right levels to fuse is really important. However, as you can see from the research out of St. Louis and San Francisco, proximal junctional kyphosis occurs sometimes, even for the best surgeons.

Regards,
Linda

[sacket]

hey sharon! i was fused from t5 to l4 too. i just had surgery about five weeks ago. at first i thought i was imagining that the unfused portion of my upper back was hunching forward, but now i'm really starting to wonder because it's becoming more noticeable to me. it started with the sensation that my head wasn't sitting square over my shoulders. mirror confirmed this. :]

to all: would fusing higher up (e.g. to t2 or higher) prevent/correct this? obviously it's too early for me to do anything about it. looks like i'll have to endure a few years of it getting worse before anything gets done.

i am starting physical therapy next week. do you think that would help?

thanks for posting the studies linda. can you translate for me from the studies about how soon after surgery kyphosis develops in those that get it?

[LindaRacine]

hey sharon! i was fused from t5 to l4 too. i just had surgery about five weeks ago. at first i thought i was imagining that the unfused portion of my upper back was hunching forward, but now i'm really starting to wonder because it's becoming more noticeable to me. it started with the sensation that my head wasn't sitting square over my shoulders. mirror confirmed this. :]

to all: would fusing higher up (e.g. to t2 or higher) prevent/correct this? obviously it's too early for me to do anything about it. looks like i'll have to endure a few years of it getting worse before anything gets done.

i am starting physical therapy next week. do you think that would help?

thanks for posting the studies linda. can you translate for me from the studies about how soon after surgery kyphosis develops in those that get it?

Hi...

It's not mentioned in any of the abstracts (at least that I can tell).

If you can see something awry in the mirror, it sounds to me like you might have something other than PJK.Are you saying that your head isn't centered over your pelvis? In PJK, the head and neck are forward of your torso.

--Linda

[Back-out]

Hi Sharon...

I think there's probably a big difference between the best surgeons and the worse surgeons.

No "probably" about it! And membership in SRS is no guarantee of quality - just a minimum standard, like board certification.

Picking the right levels to fuse is really important.

No kidding. And the thing is, it's seeming more and more apparent that there may not really be a "right" level in the long run. It's just one more way of defining a trade-off. Example: a shorter fusion might be seen as yielding greater flexibility, a safer operation and more certainty about fusing properly, against a more stable correction, less of the above quantities and less chance of requiring re-operation.

The choice sounds like a result of an individual surgeon's judgment (based on his experience and reading of the literature). possibly incorporating the patient's primary objectives. If the patient "wants it all" in her/his correction, s/he has to give up flexibility and greater security in other ways. The recent discussions of Gupta's "conservative" surgical approach illustrates such trade offs.

I've been wondering about how to define "conservative" versus whatever the opposite is in a surgeon, and I think fusion length may be one of the main measures. I've heard Bridwell described as conservative too, and I guess that he too will recommend a less radical correction and easier surgical experience for me.

It seems to be like so much else, a question of risk tolerance. The surgeon's and your own.

However, only a foolish patient would push a surgeon to go beyond his initial recommendations, since responsible surgeons must be basing their recommendations not only on their reading of the stats, but their comfort level in what they personally feel they can achieve!

I assume that a difference in average fusion length (what they'd recommend for the same patient), reflects a real difference between what given surgeons can achieve in tackling the same presentation.

For me, this translates to regret that I cannot afford to wait for Lenke to fit me in instead of Bridwell. I believe Lenke is probably more able to achieve greater correction than Bridwell (with the same degree of safety - stability of results and patient morbidity).

[Back-out]

Linda (hoping again you see this) is my impression correct that with current operating techniques, older patients with a long P/A fusion, are pretty much assured of getting PJK? That they might as well expect it?
Like sacket, though, I wonder if a (still) longer fusion starting higher on the T-spine, could prevent this.

Based on your own experience (how far up did they start your fusion?), if you had it to do over again, would you have chosen the trade-off that seems to exist in this issue?

That is, would you have preferred to have had a longer fusion if it would have meant avoiding PJK, or would you still have elected to have things as they turned out? That is, knowing in advance you'd develop PJK would you still have preferred to retain greater flexibility, and for your surgery and recovery to be that much easier and safer?

I realize, especially for younger pts, it's not at all cut and dried (BAD metaphor!) , but supposing it had been presented this way - what would you have chosen? Naturally, I'm trying to compare the two outcomes AS EXPERIENCED, since I have absolutely no idea about what PJK translates to in pain, cosmesis, and loss of function. In fact, I can't quite picture what it is - for example, what X-rays with and without would look like. (Kind of sounds like it turns into something like a "dowager's hump").

[LindaRacine]

Linda (hoping again you see this) is my impression correct that with current operating techniques, older patients with a long P/A fusion, are pretty much assured of getting PJK? That they might as well expect it?

Not at all. There are times when it's likely, and times when it's not.

Like sacket, though, I wonder if a (still) longer fusion starting higher on the T-spine, could prevent this.

Yes, if you have your entire spine fused, you'll almost certainly not get PJK. ;-)

Based on your own experience (how far up did they start your fusion?), if you had it to do over again, would you have chosen the trade-off that seems to exist in this issue?

That is, would you have preferred to have had a longer fusion if it would have meant avoiding PJK, or would you still have elected to have things as they turned out? That is, knowing in advance you'd develop PJK would you still have preferred to retain greater flexibility, and for your surgery and recovery to be that much easier and safer?

I realize, especially for younger pts, it's not at all cut and dried (BAD metaphor!) , but supposing it had been presented this way - what would you have chosen? Naturally, I'm trying to compare the two outcomes AS EXPERIENCED, since I have absolutely no idea about what PJK translates to in pain, cosmesis, and loss of function.

My fusion starts at T4. It's entirely possible that if my fusion started at T3, I wouldn't have PJK, but there's no way to know that for certain. If you do a Medline search on PJK, you'll find several additional studies that talk about choosing levels. I think, however, that there's no way you'll ever fully understand the intricacies of selecting the best levels. If you find a surgeon you can trust, my advice would be to leave it up to him/her to make that decision.

In fact, I can't quite picture what it is - for example, what X-rays with and without would look like. (Kind of sounds like it turns into something like a "dowager's hump").

It looks like kyphosis, but sometimes has a sharper angle. Here's an xray:

http://static.spineuniverse.com/disp...e_fig6b-99.jpg

[Back-out]

Linda

It looks like kyphosis, but sometimes has a sharper angle. Here's an xray:

http://static.spineuniverse.com/disp...e_fig6b-99.jpg

Ooh. That's a lot worse than I thought. That looks like real sagittal imbalance. That doesn't look like something the SRS scoring system would have waved away saying it left the patient OK except for patient self-image. An angle that sharp would make it hard to walk and look straight ahead too.

Hoping most PJK is loads milder! (again, "dowager's hump" material)
But boy! You can sure see the difference between fused and unfused portions. Can't help wondering what that patient looked like sideways BEFORE her surgery!

[titaniumed]

This is a great thread....

It explains why I couldn’t get my surgeon to fuse lower on me.....not even T4.

It seems that the more I read on this subject, and on sagittal imbalance, it seems that the "amounts" of plumb line deviation seem to be significant. Like several inches, which is huge.

Anyone who goes through surgery should be monitored by their surgeons to watch and see if PJK or sagittal imbalance issues happen quickly. (Under 2 months) I don’t know how long it would take if an issue arose, I know my surgeons were not keen on going back in so soon after I thought I had an incisional hernia. It turned out to be gall issues, but they were going to wait, and wait awhile...

I saw my surgeon 3 times within 2 months of being released from the hospital, and a few times up till 1 year post.

Again, some good advise from Linda. Even though I turned out great, and I'm extremely greatful, she reminds me of how lucky I really am.
Ed

[Sharon C]

Hey Ed!

Nice vaca picts, btw!

I'm going to see Dr Menmuir THIS FRIDAY the 16th. I'll be very interested in his take on my condition. As I mentioned before, Dr Fry said if I were his wife, he would advise me not to persue more surgery at this time. He acknowledges the kyphosis, but says he'd go in and take all my old hardware out (have to ask him why next time!) go through the front of my chest, and then I might still have my neck fall forward in the future! So, instead of a relatively lesser surgery, it would be even nastier than the original one (my words, not his.) I can't wrap my head around that scenario right now, so if Dr. Menmuir concurs, I think I might just settle into the idea of having to walk bent over and/or with support until the technology improves. If he thinks he can help with a lesser procedure, however, I'll get a 3rd opinion from Dr Grupta at UC Davis. You ARE very lucky yours went so well, and you're very generous to share your thoughts and experiences on this forum.

Regards,
Sharon

[titaniumed]

Hi Sharon

Glad you enjoyed the pics.

I hope things go ok tomorrow with Dr Menmuir. Be sure to let me know what he says, in a PM or e-mail. titaniumed@hotmail.com

Dr Menmuir is from South Africa. Its funny, at Twin Cities, several of the scoli Doctors and professors are also from South Africa.... Older ones who probably trained with Dr Moe...

He saved my life. I would give him my right arm.
Ed

[Susie*Bee]

Sharon-- we are all so concerned, I hope you will post at least a little something about your appointment for the rest of us too. Thinking of you!

[golfnut]

Well, this thread is really scaring me. I don't want to have more of a self image problem after going through this tough surgery. The kyphosis appears to be very common in older patients, such as me. Once, again, I hope I'm not going to regret having this surgery.

[Back-out]

I can see why you were willing to move to CA to be near him, if necessary, Ed. It's no joke having a surgeon far away. How could you have stayed in such close touch with him right after your surgery, otherwise? (Much more than he or any of them requires, I'm sure).

And also he would never have been able to have your PT overseen so closely (at home? Wow!).

It is clearly an advantage in avoiding these things, to actually have your surgeon look in on you like this - early on. No way is it the same, talking on the phone or even sending images.

Yet what surgeon would suggest a patient just drop in for a check-in if they live a thousand+ miles away - and so soon after the original surgery? I'm starting to think maybe there's something to be said for subletting a place in the area for the first few months. Considering the kind of intimate oversight it would permit - and safety... And I'm not a bit sure it would be much pricier than a few airfare trips back and forth, patient and helper.

In my case, I'd also be sure of having PT people familiar with long fusions - def. not the case in the boonies here. The risk factor of needing to fall back on my DANGEROUS local hospital in the event of straight medical complications is yet another issue.

Thoughts?