% of people who are happy after surgery

[rohrer01]

It's also quite interesting how things can shift from negative to postive and vice versa. I agree that studies are the best way to go. They are hard to find on the internet for the layperson. I know nih has some good stuff, but for other things they (meaning other websites) want you to "pay" to join or be a doctor or something. I have found the forum very helpful. Thank you.

[LindaRacine]

It's also quite interesting how things can shift from negative to postive and vice versa. I agree that studies are the best way to go. They are hard to find on the internet for the layperson. I know nih has some good stuff, but for other things they (meaning other websites) want you to "pay" to join or be a doctor or something. I have found the forum very helpful. Thank you.

While you can't get full text, PubMed is available to everyone:

http://www.ncbi.nlm.nih.gov/pubmed/

[jrnyc]

Linda, sorry i didnt make the question clear...what i meant to ask was...if a complication is ....a few months after the surgery date...
the complication=screw sticking out

solving complication=screw removed by a revision surgery

result=no more complication

i am trying to imagine where/how that would be icounted in the study.....if at all?

sorry if i am making the question confusing...

jess

[rohrer01]

While you can't get full text, PubMed is available to everyone:

http://www.ncbi.nlm.nih.gov/pubmed/

That's what bothers me. I like to see full text. In school, I could get it because I had a special password. I don't really know what they are trying to hide. Most people don't even know how to read one of those papers, let alone interpret one. ARGH THANKS, though!

[LindaRacine]

Linda, sorry i didnt make the question clear...what i meant to ask was...if a complication is ....a few months after the surgery date...
the complication=screw sticking out

solving complication=screw removed by a revision surgery

result=no more complication

i am trying to imagine where/how that would be icounted in the study.....if at all?

sorry if i am making the question confusing...

jess

Hi Jess...

The study in question was a review of a bunch of studies, so it's impossible to know without reading all of the contributing studies. However, to my knowledge, a complication is a complication, regardless of whether it gets resolved.

Surprisingly, serious complications are pretty rare in scoliosis surgeries, especially if one selects an experienced surgeon. At UCSF, the surgeons do a lot of very complex revision surgeries. Despite that, I've yet to see a serious complication.

--Linda

[LindaRacine]

That's what bothers me. I like to see full text. In school, I could get it because I had a special password. I don't really know what they are trying to hide. Most people don't even know how to read one of those papers, let alone interpret one. ARGH THANKS, though!

I don't think anyone is hiding anything. I would assume it's because the majority of the publications that contribute the articles cost an arm and a leg. If they published full text articles for free on the internet, all the publishers would go broke.

--Linda

[hdugger]

It makes me wonder if the nature of the forum itself isn't creating a biases toward the "good" outcomes. Those having good outcomes would want to encourage others not to be afraid of the surgery, because, after all, it helped the person with the good outcome.

What's been interesting to me is, even people with fairly serious complications end up feeling positive about the surgery. The Scoliosis Support forum has a very different vibe, and people are quite open about their post-surgery pain levels, ongoing problems, etc. Yet, even within that group, I've only seen one person who truly regretted her surgery (and her doctor, in my opinion, was guilty of malpractice). Beyond that, even people with serious complications or those needing several revisions did not regret it.

Maybe there's some other anti-surgery forum that's gathering all the malcontents (), but, barring that, my sense is that people are fairly happy with their results.

[LindaRacine]

Maybe there's some other anti-surgery forum that's gathering all the malcontents (), but, barring that, my sense is that people are fairly happy with their results.

I agree. I think that's mostly because the majority of adults who have scoliosis surgery do so because they have the motivation of chronic pain and loss of function. Putting up with an infection, an ileus, or a dural tear is a small price to pay for the long term resolution of pain and regaining the ability to do the things that make life worth living.

--Linda

[Lorraine 1966]

I don't regret one thing about having surgery, even though it was so long ago.

I am just so very, very grateful.

Lorraine.

[debbei]

ummm..thanks, Linda...my fault for speed reading a medical study..not what that kinda reading was made for...my apologies...

i reread the study.....interesting....i hope others dont pick up the 41% statistic and get discouraged...i guess the kind and degree of complication is the concern...Dr Lonner told me that after he operates ("fixes" me, i tell my puppy) later on i might need screws or other hardware removed...i am thin and there is a chance stuff could poke thru or somethin'.....
am assuming that would be considered a "complication," but it would be fixable...so how do studies account for successful revisions of complications?

jess

Jess,
there are also complications that happen at the time of surgery but are taken care of at that time. For example, I did have a dural tear during surgery, but it was successfully patched up and I never noticed any problem.

[csc]

Okay, I'll chime in...

I had surgery over two years ago as evidenced by my unchanged signature.
This forum is one of the things that I check first in the morning but hardly ever post. I really admire how helpful everyone is and all the success stories.
However, I seldom post. Why? Because I am rather disappointed to say it mildly.
I hate to be one of the scoli patients with sadder news. My fusion is perfectly fine and amazingly straight. It's a work of art compared to what it was before. Yet, I have not one pain-free day in many years.
The disks below the fusion have already become arthritic and the scar tissue in my upper thoraic is a constant reminder of the surgery. I have gone through multiple physical therapy sessions with no relief. Gentle water therapy made it worse. Currently on an anti-inflammatory which helps some. I don't take pain-pills because of the side effects. I have leg pain which makes it difficult to stand for any lengthy period of time. I do go to Curves three times a week to try to stretch and loosen some of my muscles. Needless to say this has affected my social and family life. I work full-time and that is becomingly increasingly difficult. Facet and epidural injections have been tried with no positive long-lasting results.
Last doctor app't, he said he would like to see me wait about five years. But if I say that I can't stand it anymore it's a go.
So anyway, can you understand why I don't post? There so many glowing stories following this horrendous surgery and I had really hoped to be one of them. Sorry to be so gloomy on a Sunday morning. I just saw this post as an opening to tell my story and felt compelled to post.

[rohrer01]

CSC,
Everyone needs to be heard from. I am aticipating surgery due to the pain that I have. I would like to hear the bad outcomes along with the good ones. I don't expect to go under the knife and have it be all better. 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. It was as if he was reading my mind. He listed all my favorite things to do. However I'm hoping that the harware removal surgery will alleviate my pain after about a year from the first surgery. I'm worried about scar tissue interfering with things and even pinching nerves. I'm a little afraid that "I don't know what pain is." If you know what I mean. I'm so glad you chimed in.

What are they going to do for your pain. My pain doc right now wants to put an intrathecal catheter into my spine. He's hoping that if I have the scoli surgery, the surgeon will leave it in. I hope there is something they can do for you.

[tonibunny]

CSC,
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.

Yikes, surely he means just whilst you're healing from the fusion, not permanently? How much are you going to have fused - will he be going into up into the neck?

[Karen Ocker]

I had surgery over two years ago as evidenced by my unchanged signature.

The disks below the fusion have already become arthritic and the scar tissue in my upper thoraic is a constant reminder of the surgery. . .

The discs below my original(1956) fusion are the reason I was fused to the sacrum with my revision in 2002. They do not become arthritic but degenerate severely. When I was being evaluated for the revision Dr. Boachie said he needed to evaluate the discs to see how far down to fuse. That is why I was fused to the sacrum with my revision. I am totally pain free at age 67.
Some people, afraid of being fused to the sacrum, beg the surgeon not to fuse that far down ---but the added stress on those discs can cause pain later on because they tend to degenerate. I live a perfectly normal productive life with the slight limitation of movement.

It sounds like those degenerated discs were there when you first had your surgery and are driving you nuts now.
Scar tissue is really helped by Rolfing/myofacial release AKA Structural Integration.

[Doodles]

CSC--
I know exactly what you mean. I really debated to put even this post although I've certainly talked about problems I still have. My pain is not nearly what you have but it's still very stiff and tight a great deal of the time. Sometimes it's better and sometimes not. Sometimes I would classify it as definite pain. It IS better than before surgery though so that's good.
My rib hump seems to be more noticeable than at 6 months out. My left side still tilts too but it doesn't seem to bother me now as much as the rib hump. Sitting against a church pew, hard back chair etc, is more difficult now than a few months ago. My scapula really juts out. The sides of my back are very uneven. Actually around 6-9 months was when I felt and looked the best.
I attributed much of this to age and severity of my curve and rotation. But recently there are so many on here of similar ages with even worse degrees who have their rib humps nearly gone. That's what I can't figure out since I had an excellent surgeon and sometimes the same one as those folks.
I too admire & congratulate all those on here who sound like they had such wonderful outcomes. I guess I'm somewhere between CSC and them. I knew it had to be done and generally am pleased. It just looked so much more promising early on. I hate to sound whiney here. I know there are so many with so many worse problems! Well, got that off my chest. Janet