% of people who are happy after surgery

[Pooka1]

Depressing to think there is a testimonial bias

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.

First. I am really glad you posted. I hope others who didn't have the outcome that was hoped for will take a cue from you and post. It is impossible to get a clear picture of this situation if the testimonials are biased towards only optimal outcomes. It actually depresses me to think about this.

Now there will always be high biases skewing the testimonials because these testimonials are too small a sample size from the actual surgical population. The chances of this small sample actually reflecting anything real are extremely low. But when something like this comes up it is a wake up call to at least remind people that there is a huge bias here.

Can I just ask what your curves were when you had your surgery? It might be that extremely large curves can only be helped so much. Before pedicle screws, it probably made sense to wait. In the era of pedicle screws, that case seems harder to make though we need way more data.

[ETA:] Also what levels were fused? Adjacent level disease is still an issue with some fusions as Karen pointed out.

I hope you continue posting. I think there is something to learn in almost every testimonial.

[csc]

Chiming back in...

I was fused from T3-L4. The discs below were healthy before surgery. Told one in five chance that there would be any problems. Also, my curves were pretty well balanced approx 47, 46. So not huge by any means. Less than a year later I noticed that old familiar feeling bending over. Not sure what the next step is. Doctor said he wanted to put off the surgery for five years as I'm not going to like it. Losing that extra motion. He referred me to the clinic's pain doctor. From there I had facet injections with no positive result. Next will be epidurals. I had two last year. One in July- seemed to help some. Then again in October- no help.
Felt like I was having my own pity-party this morning. I can usually be pretty up beat about it. Just was thinking this morning that I really expected more being two years out. Thanks all for being so understanding and helpful.

[joyfull]

CSC, who was your surgeon? It is important for people like you to post, but I must admit it gives me pause. I am going into surgery on June 8th with Dr. Lonner with absolutely no pain. My scoliosis is 85 - 90 degrees, depending on which doctor is measuring, thoracic, and I'm doing this mainly to prevent progression and heart and lung problems. I feel as though there is no answer; I just have to close my eyes, take the plunge and hope for the best. I was also told that I have significantly reduced lung function, but I am hardly aware of it in my everyday life. If I had pain now, the decision would be much easier. Best to everyone, Joy

[Pooka1]

I was fused from T3-L4. The discs below were healthy before surgery. Told one in five chance that there would be any problems. Also, my curves were pretty well balanced approx 47, 46. So not huge by any means. Less than a year later I noticed that old familiar feeling bending over. Not sure what the next step is. Doctor said he wanted to put off the surgery for five years as I'm not going to like it. Losing that extra motion. He referred me to the clinic's pain doctor. From there I had facet injections with no positive result. Next will be epidurals. I had two last year. One in July- seemed to help some. Then again in October- no help.
Felt like I was having my own pity-party this morning. I can usually be pretty up beat about it. Just was thinking this morning that I really expected more being two years out. Thanks all for being so understanding and helpful.

A 20% chance you would ever get adjacent level disease below the fusion or just not so soon? I think I understood our surgeon to say if it goes to L3 or L4 or L5 then it is just a matter of time. The earliest I heard was about 5 years where an extension is required so you are way ahead of that curve and it might suggest that somehting else is going on. Maybe you should get a second opinon from a guy specializing in revision.

BTW I am not so sure that the comment about L3 and lower fusions is based on the pedicle implants. I don't know how much data exists for adjacent level disease with all pedicle screw constructs for them to say much.

As to not liking the extension, I hope people fused to the sacrum or to the pelvis chime in. You should take special note of Ti Ed's thread on his amazing ability to twist after a T2 -pelvis fusion. If the extension removes your pain, I think you should read those testimonials to see if the surgeon is right about your not liking the result.

You were correct to expect more being two years out I think.

Last, when they told you you would never progress (after wearing a Milwaukee), do you remember what your curves measured? I am collecting data on that unofficially of course.

I hope you keep posting. But I think Linda should comment on how comment your result is. I think she already mentioned that most people get a good, pain-free result eventually. I wish you did too and I certainly hope you will in the near future.

[Nitram]

I was fused T10 - Pelvis just over a month ago and am glad I did it. My doc said he could stop at L5 but that the chances were very high that I'd need surgery again within 5 years as that disc would likely degenerate quickly....I chose to just have it all done at the same time and to be honest, I'm very happy I did. I really notice very little loss of mobility from where I was pre-surgery, granted, I was fairly limited before, but now I hopefully won't have to worry about it again.

Rich

[jrnyc]

hi csc
sounds as if you do have degeneration of discs in lower spine...i know that causes a lot of pain....my surgeon told me last week that my curves had not increased in the last 12 months, but that my discs were worse on the MRI....

i really think another opinion..at least one...is in order! i hope you live somewhere allowing for more than one surgeon who knows scoliosis surgery and revision, as Sharon said, to take a look and do a consult....or at least are near a major city for that to be available....

please try to consider going to someone else...cause after going thru surgery...you sure do deserve a better quality of life!!!

i need fusion L4-sacrum and T11- S1..."with bilateral pelvic fixation"...i am nervous about loss of flexibility...but this has so constricted my activities in life...starting with early retirement and downhill from there...that i am considering doing it within the next 12 months...everyone who had fusion to pelvis who writes on forum swears that it is waaaaay less limiting than those of us who have not had that surgery yet are imagining!

best of luck
jess

[Nitram]

Hey Jess, I'm one of those that says fusion to Pelvis isn't that bad. I definitely expected it to be worse than it is...granted I'm only 4 weeks into recovery but its really not that bad at all....I've just had to learn to squat more and bend from my hips. Still need to figure out how to put socks on though! :-)

Rich

[LindaRacine]

i need fusion L4-sacrum and T11- S1.

Hi Jess....

Just so everyone is clear, you're actually going to be fused T11-sacrum. While surgeons often talk about the front and back fusions separately, yours are totally overlapping.

Regards,
Linda

[Singer]

CSC, I'm sorry that you are continuing to have such significant problems and pain.

And regarding the subject of stopping a fusion at L5 -- Dr. Boachie did tell me that I had a 50-50 chance of needing to extend to the sacrum at some point in the future, but he was insistent that my L5 disc was in great shape and that I was likely to get a lot of years out of it. Time will tell..but the point is, I trusted his expertise and was not about to request that my original fusion go the sacrum in order to avoid future revision surgery. I am always amazed that some surgeons actually let their patients make the decision about how far down to fuse. I mean, isn't this what we're paying them hundreds of thousands of dollars for??

[rohrer01]

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?

He said the lowest he could start with the fusion is T2 so he will be fusing T2 to L1 at least when he does it. I will have limitations because I am very thin and the rods will interfere with my muscles. The revision surgery, after the fusion is complete will probably be what releases my arms. At least that is what my understanding is. My curve is so high that my head comes out of my shoulders at a 46* angle. I would like him to straighten my neck, it gets quite sore just holding my head up to look "normal". When I let it droop to the right, the weight of my head also causes neck strain. It's a lose, lose situation if you ask me. I want him to fuse as high up as he can and still leave me with most of my neck mobility. Some diminished function would be fine with me because when I have flare-ups, I can't turn my head at all, look up or down, nothing. Forturnately, I just have mild limitation most of the time.

[jrnyc]

Hey Linda...thanks for the explanation.....i get confused which is going to S1 or which to sacrum...
i do know that Dr Lonner said he'd probnably have to go to pelvis with screws and such, but said he'd take a look when he got in to see if he could avoid it (per Dr Anand)..i thought about it and said that once we finally do the surgery (after several years of agonizing) i would trust him to know what to do...and i guess sacrum or pelvis aint gonna' be that different...

Rich...thanks for the note...i guess most "pelvic people" here on forum say the same thing...that it is no where near as bad or as "robot like" as those of us before-surgeries think it will be! glad you are healing...read your thread...dont push too hard...you've got all the time in the world left after you do go off the meds...no hurry!

jess

[LindaRacine]

Hey Linda...thanks for the explanation.....i get confused which is going to S1 or which to sacrum...
i do know that Dr Lonner said he'd probnably have to go to pelvis with screws and such, but said he'd take a look when he got in to see if he could avoid it (per Dr Anand)..i thought about it and said that once we finally do the surgery (after several years of agonizing) i would trust him to know what to do...and i guess sacrum or pelvis aint gonna' be that different...

Rich...thanks for the note...i guess most "pelvic people" here on forum say the same thing...that it is no where near as bad or as "robot like" as those of us before-surgeries think it will be! glad you are healing...read your thread...dont push too hard...you've got all the time in the world left after you do go off the meds...no hurry!

jess

Hi Jess....

S1 stands for the sacrum. The sacrum is actually multiple vertebrae that have fused together. I'm not certain why we sometimes here S1 and sometimes the sacrum. It's essentially the same place. The doctors at UCSF are fixing to the pelvis instead of stopping at the sacrum for a lot of patients. And, I have to say that the recoveries appear to be much easier. I'm not sure why, but it may be that the pelvic fixation keeps the L5-S1 level from moving, which speeds up fusion.

By the way, I had xrays taken last week for the first time in a long time. (I'm going to try injections for leg pain that I've been experiencing for the past 6 months.) I was disappointed to see how much more deteriorated all of the discs below my fusion are. I had hoped to avoid fusion to the sacrum (when I finally decide to have the surgery), but it looks like I'll probably be joining that club some day too. I'm not nearly as freaked out about it as I would have been 10 years ago, as I'm routinely seeing and hearing about really good outcomes.

Regards,
Linda

[jrnyc]

wellll...i havent had any fusion...yet...and my discs are really bad now...gotten worse recently, though the curves have been stable for a year...so if guess there is just no way of being sure...i mean, if you hadnt had any surgery at all, you'd probably be in worse shape all over....
anyway, i hope the injections do help you...i know from all the different kinds i've tried, some help... and some dont....but i think they are definitely worth a try!

when you...and i...do join the "pelvic people" club, at least, from what i've seen on this forum, we'll be in good company!

take care...and thanks again for all the knowledge you so generously share!
jess

[titaniumed]

I had no choice in my fusion length. My low end was so hammered that I didn’t even question going to the pelvis. I guess through the years of seeing surgeons pointing to my x-rays, and shaking their heads, prepped me. I did ask to drop down from T2 but my surgeon would not deviate at all. I was also warned that there would be no guarantees on anything, pain relief or correction. With the mind blowing pain I was in at the end, I had no choice, I went as long as I could go.

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

[tonibunny]

He said the lowest he could start with the fusion is T2 so he will be fusing T2 to L1 at least when he does it. I will have limitations because I am very thin and the rods will interfere with my muscles. The revision surgery, after the fusion is complete will probably be what releases my arms. At least that is what my understanding is. My curve is so high that my head comes out of my shoulders at a 46* angle. I would like him to straighten my neck, it gets quite sore just holding my head up to look "normal". When I let it droop to the right, the weight of my head also causes neck strain. It's a lose, lose situation if you ask me. I want him to fuse as high up as he can and still leave me with most of my neck mobility. Some diminished function would be fine with me because when I have flare-ups, I can't turn my head at all, look up or down, nothing. Forturnately, I just have mild limitation most of the time.

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.