% of people who are happy after surgery

[fandango]

To be fair, the people who are having most trouble at SSO at the moment seem to be adults who have had surgery for severe kyphosis. Those who have had surgery for scoliosis seem to do much better. Also, don't assume that everyone is from the UK! Although based in the UK, SSO isn't just made up of people from there; I think it's about 50% from the UK and Ireland, and 50% from elsewhere including Australia, New Zealand, mainland Europe and a handful from the US. Some of those having ongoing problems are actually from the US (there are at least 3 in the first couple of pages of the General Forum), and the lady with the severest curvature on the board is also from the US.

Ireland, being a separate country, has a completely different healthcare system to the UK and they have had great problems there in terms of scoliosis treatment because they're under so much strain.

I think the top three or four UK surgeons are probably on a par with many of those at the top end of the field in the US. You rarely hear of people having ongoing complications if they were operated upon by the guy who did my surgery, for instance. There are also a couple of consultants who I don't have any faith in whatsoever!!! You do occasionally get people who have been treated by surgeons who aren't specialised in spinal deformity, with disastrous results.

So, all in all, I don't think the UK is significantly worse than the US.

Really? why is kyphosis surgery more problematic? that's what mine is for

[hdugger]

Really? why is kyphosis surgery more problematic? that's what mine is for

I'd strongly recommend checking out the SSO forums. They have a whole section on kyphosis surgery - http://www.scoliosis-support.org/forumdisplay.php?f=27

Toni will know the answer to this better then me, but I think it has partly to do with how rigid Scheuermann's Kyphosis is, and how difficult it is to get the correct saggital balance.

Edit: Oh, and also to do with the wedging in Scheuermann's Kyphosis

[Pooka1]

Really? why is kyphosis surgery more problematic? that's what mine is for

Wait a minute. There might be someone who knows the answer to that in this sandbox but I am not convinced that is the case.

It just so happens that two of the more problematic cases on SSo at the moment are kyphosis but one of those guys resumed smoking so that probably explains that one.

I REALLY don't think we can generalize.

There are more cases of scoliosis problems, one in particular an anterior procedure, compared to kyphosis as far as I can tell, but the numbers are so small that we can't tell from that alone which is more problematic (if one is).

[hdugger]

Wait a minute. There might be someone who knows the answer to that in this sandbox but I am not convinced that is the case.

It just so happens that two of the more problematic cases on SSo at the moment are kyphosis but one of those guys resumed smoking so that probably explains that one.

I REALLY don't think we can generalize.

There are more cases of scoliosis problems, one in particular an anterior procedure, compared to kyphosis as far as I can tell, but the numbers are so small that we can't tell from that alone which is more problematic (if one is).

Everyone that I know of who's been evaluated for kyphosis surgery has been told by their doctor that it has a higher complication rate then scoliosis surgery. I think that's pretty well accepted.

[tonibunny]

It would be really helpful for people like myself, who haven't yet had surgery (or 100% decided to go ahead) to see these discussions. It's important to hear the reality of unsuccessful surgery I think...

Well, there is a very useful forum for Revision Surgeries here at NSF.

The problems being seen in the SSO people who had kyphosis surgery is that they have developed "Junctional Kyphosis", ie the unfused part of their spines have continued to curve over at the top of their fusions. Surgeons generally try to keep the fusion as short as they can, in order to preserve mobility, but occasionally it turns out that they really should have fused higher up. In addition, as Pooka1 says, there's a chap whose spine hasn't solidly fused and this is possibly because he smoked in the immediate post-op period.

[Pooka1]

Everyone that I know of who's been evaluated for kyphosis surgery has been told by their doctor that it has a higher complication rate then scoliosis surgery. I think that's pretty well accepted.

Okay fine. Learn something new.

[tonibunny]

I'd strongly recommend checking out the SSO forums. They have a whole section on kyphosis surgery - http://www.scoliosis-support.org/forumdisplay.php?f=27

Toni will know the answer to this better then me, but I think it has partly to do with how rigid Scheuermann's Kyphosis is, and how difficult it is to get the correct saggital balance.

Edit: Oh, and also to do with the wedging in Scheuermann's Kyphosis

Cheers Hdugger, but I'm afraid I really don't know much about Scheuermann's, having scoliosis myself Kyphosis surgery usually involves the cutting of "osteotomies" (sections of bone) from the vertebra though, which is quite a brutal procedure and isn't generally needed for scoliosis surgery.

[jrnyc]

hmmmm.....Dr Lonner tells me he does not need to fuse higher than L4 and T11 on me...though i have a thoracic curve of 42...i specifically asked about future need for fusion higher up...he said that cant be predicted but he does not think it will happen...also said a surgeon doesnt fuse on the "chance" that somethng may happen...when the fusion is not needed now...


jess

[hdugger]

Really? why is kyphosis surgery more problematic? that's what mine is for

Sorry, I think I gave a pretty off-hand answer for this, forgetting I was talking to someone who might have to undergo the surgery. My son has kyphosis too (as well as scoliosis) so I've been buried pretty deep in the data for awhile.

Scheuermann's Kyphosis specifically has an additional surgical step (the one Toni describes) where you unwedge the vertebrae. "Regular" kyphosis has some risk of sagittal plane imbalance which seems to lead to junctional kyphosis in some cases. I'm just now trying to get a handle on the likelihood of this risk, but I know that it's higher for kyphosis patients then in scoliosis patients.

[jrnyc]

ummmm...did you mean that osteotomies are brutal procedures? i apparently need a couple of otomies...2 osteotomies and a couple of laminotomies or laminectomies or some kind of ot/ectomies....

this is the first time the surgeon mentioned those procedures to me...i kinda dont care..i mean, once they cut me open, they can do what they have to do...i know i have listhesis...dont know about kyphosis...but i do know that my back is a mess

jess

[Susie*Bee]

This thread got me back... the discussion on why there are not that many people saying negative things about their surgeries got to me. I have even had some people mention to me that they were asked to stop posting things that would scare or discourage others.

I am pleased with my own surgery, glad I went through it, appreciate all the benefits, but even so it is not what I expected. My recovery was (is) much slower than most of you who are still posting. I didn't realize some of the limitations that I have. Some things are little-- like trying to bend over the table to work on a poster. Just can't do it. As others have said, I figure out how to do some things in other ways.

I've been on the forum long enough to befriend some who had lousy outcomes. It happens, even if not as often. One ended up with 8 (or was it 9?) surgeries. Another was in rehab and on a respirator for over a year and struggled to be ambulatory again. And I know there were some who got along mostly ok but mentioned other problems like grocery shopping and other every-day type activities. One said she had a difficult time lifting a milk carton and smallish grocery bags. She wondered if it would ever get better...

These are not common problems-- and maybe some of them can be resolved with more time. But for the ones who are enduring extra pain and problems, time ticks slowly and it is easy to feel despondent.

When I first joined the forum about 2.5 years ago, it seemed like there were more posters who talked about their problems. I am amazed at the change-- this past year or so, the ones who had surgery recovered lickety-split and are doing great things. That is wonderful-- but at the same time I'm not sure if it's a true picture or not. There may be others who feel embarrassed or ashamed that they haven't bounced back as quickly. There's something in human nature that causes us to blame ourselves if we don't do as well, and then we feel like failures. It's much harder to post when things aren't going as well as one would like... We all heal differently.

Just wanted to say that there have been others with problems, people are reluctant to sound negative, and some have even been asked to refrain from doing so.

[tonibunny]

ummmm...did you mean that osteotomies are brutal procedures? i apparently need a couple of otomies...2 osteotomies and a couple of laminotomies or laminectomies or some kind of ot/ectomies....

this is the first time the surgeon mentioned those procedures to me...i kinda dont care..i mean, once they cut me open, they can do what they have to do...i know i have listhesis...dont know about kyphosis...but i do know that my back is a mess

jess

Some types of osteotomies are more "brutal" than others, it depends on what type you need. Any sort of surgery where they remove chunks of bone is going to be harsher than a surgery which doesn't require this, therefore a kyphosis surgery with osteotomies is going to be harder than a typical scoliosis surgery which doesn't require them. Likewise, a scoliosis surgery with a thoracoplasty is going to be more brutal than a scoliosis surgery without one.

I too am sorry for using this language in a thread where you're waiting for surgery, but it sounds like you prefer if we were honest. I'm glad you have one of the best surgeons in the US looking after you!

[jrnyc]

Tonibunny...
Are you writing of the osteotomies from having had one...or two...or have relatives who've had osteotomies....or is it from the perspective of a professional nurse or other medical position....
i am curious as to what your perspective is...

jess

[tonibunny]

Neither, I'm writing from the perspective of someone who's watched several of their close friends have surgeries which involved osteotomies, and of having moderated a scoliosis/kyphosis forum for nine years.

I have had a couple of thoracoplasties though (that also involves removing bone), and I have had bone removed from my hip for a bone graft material. Having a bone cut is always going to be more difficult than not having it cut.

[jrnyc]

O.K....thanks for clearing that up...

i kinda expect alot of pain from the surgery...i have a pretty good threshold for it, though i am no superwoman!
Dr Lonner gave me some specifics about taking out bone and putting it somewhere else and replacing with or adding BMP or something...i was getting kinda overwhelmed at that point...and shocked that he was offering to do minimal invasive...so another visit will be needed.....with notes...

i am not differentiating which pain will come from what...though i guess after surgery and once healing started, that would be possible and maybe even necessary...i dont know...the only bone grafting stuff i've had to this point is dental...and it wasnt fun, though it has healed quickly and well...

jess