% of people who are happy after surgery

[fandango]

do you think it would be a good idea to have a part of the forum specifically for people to post who have not had satisfactory results?

I get the feeling from posts here that those people are more reluctant to share their stories, amidst all the happy success stories.

[joyfull]

I, for one, think that is an excellent idea.

[CHRIS WBS]

My doctor alread told me I won't be able to raise my arm above my shoulders after the first surgery. He said it would be hard to play the piano, swim, and do other things.

I am fused from T4 to the pelvis and I remember my surgeon telling me that I would always have a problem with sitting. I have had absolutely no problems with sitting. I think that these surgeons will sometimes present the worst case scenarios. But we’re all different and what may have been one patient’s experience does not necessarily mean that will be your fate as well.

[rohrer01]

Oooch, you sound like a very unusual case. I hope the rods turn out to be more comfortable than predicted! Hopefully once they're removed you won't have any problems. I have no noticeable restriction in my arm movements and I'm fused to T1.

Maybe I will be fortunate, like you. He just has to tell me the worst case scenario, just in case it happens. He said because I am thin I would likely be able to feel the rods through my skin. I'm not quite sure what I can do about that??? Thanks for the concern.

[hdugger]

do you think it would be a good idea to have a part of the forum specifically for people to post who have not had satisfactory results?

I get the feeling from posts here that those people are more reluctant to share their stories, amidst all the happy success stories.

I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

[Pooka1]

I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

I have had the same thought about SSo. There seems to be a much higher complication rate. There are cases of persistent serious pain in young people, need for revisions very soon out in young people, etc. It certainly seems different from here. It is hard to believe the quality of surgeons in the UK is different from that in the US.

The sample size there and here is so small and is self-selected so it is impossible to say what it going on. Maybe Toni has some thoughts.

[tonibunny]

Maybe I will be fortunate, like you. He just has to tell me the worst case scenario, just in case it happens. He said because I am thin I would likely be able to feel the rods through my skin. I'm not quite sure what I can do about that??? Thanks for the concern.

I agree, the consultants do have to tell you the worst-case scenario. I do hope that you end up better off than expected

I've always been very thin too, and although I'm average height I was 6.5 stone at the time of the surgery when I was 18 (I went down to five and a half stone in hospital, which was horrid!) I can feel my rod and it has never bothered me, but I have a Harrington Rod in the posterior of my spine, which is a much simpler construct than rods with pedicle screws. I have some pedicle screws myself now (had the fusion extended down one level last year) but they are at L3-L4 and aren't as prominent as they would be further up.

[Doodles]

Linda--
So is being fused to the pelvis actually farther than S1? I have had mine referred to as to the pelvis (I do have the big iliac? screws into the pelvis) and S1 and recent x-rays locally put it at S2. I think in the end it's all about the same. Guess it is in the end! Thanks for your info. Also, Pooka, I like your idea for another section on the forum. Janet

[Pooka1]

Also, Pooka, I like your idea for another section on the forum. Janet

That is fandango's idea, not mine thought I agree.

[tonibunny]

I have had the same thought about SSo. There seems to be a much higher complication rate. There are cases of persistent serious pain in young people, need for revisions very soon out in young people, etc. It certainly seems different from here. It is hard to believe the quality of surgeons in the UK is different from that in the US.

The sample size there and here is so small and is self-selected so it is impossible to say what it going on. Maybe Toni has some thoughts.

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.

[Nitram]

thanks for the suggestions Ed....I'll give that a try for the socks. I have the long shoehorn and that works great!

Rich

Rich
I used my sock installer for a few months till I got tired of fiddling with it and figured out that I really didn’t need it at all anymore.

If you use a stool about 30 inches high, or any platform of that height, just set your heel up there, holding your toes up. Reach down to get the sock started, then pull it up. Don’t pull too hard right now as you are not fused, move slow.

Get yourself a long shoe horn, it will help quite a bit with the shoes. I use one, but I can get away without it.

I have skied hard 2 days in a row this weekend and I believe I'm winning the battle. The post surgery fatigue battle that is. Its hasn’t been easy, the first runs in the morning can be trying... my muscles are saying, "cant you give us a break?"
Probably not.
Ed

[hdugger]

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

That's the conclusion I ended up reaching. I think the differences have to do with the type of operations being performed and with a forum culture that seems to make people more comfortable about sharing their post-surgery problems.

But, I did wonder about it at first.

[jrnyc]

they have some great scoli surgery in Canada, and they have "socialized medicine" there...my sister's been living in Canada (Montreal area) about 35 years...has no major complaints about the health care, though i tease her all the time!

jess

[fandango]

I think that's true - there was a discussion here a few months ago on the same subject.

It's a forum culture thing. At the scoliosis support forum (the one Tonibunny moderates) you hear much more discussion about post operative pain and problems needing revision therapy. I wondered for awhile if surgeries were just less successful in England, but I decided it just has to do with what people are comfortable talking about.

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...

[Pooka1]

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...

Completely agree. It helps patients formulate better questions to ask their surgeons I would think. Patients can learn to differentiate between various scenarios.