% of people who are happy after surgery

[LindaRacine]

Linda, Chris, I am having surgery on June 8th and really need to be ready to go back to work in September. I am a teacher without tenure. If I postpone the surgery until next summer, I'll have tenure and my position will be more secure. I am seriously considering postponing it. My curve is 85-90 degrees thoracic.

My surgeon thinks it it "not unrealistic" to think that I'll be able to go back to my 4 day a week job in September. I'm having the minimally invasive anterior release, then an open posterior, an 8 to 10 hour surgery. I would appreciate hearing your thoughts about this. Thanks, Joy

Hi Joy....

Since you're not in extreme pain, and your curve isn't likely to progress rapidly, I'd personally opt for waiting for the tenure. It is probable that you'd be able to go back to work in September. But, as you already know, there's no guarantee. My thinking is "why take the chance when waiting a year will give you more peace of mind?" The only downside that I can think of is that you'll have another year to obsess about the surgery. ;-)

Regards,
Linda

[allycat]

I'm in the not-so-happy column

Unfortunately I haven't had much time to be on the forum lately which is quite distressing to me. I love this place and it's where I go for my "Me" time. Life has really been getting in the way of my "ME" time and I'm just not very happy about that!
I usually only post in the revision section since I'm now in the market for a major revision, but I always peruse the other areas to make sure I'm not missing out on some great information. Several days ago I took a quick tour of the forum to see what's been going on and when I saw the title of this thread, quite frankly, I dismissed reading it. The reason? I did not want to be a wet blanket at anybody's picnic. But as I skimmed over it today I saw csc and Janet and maybe others (like I said, I skimmed) had posted less than glowing reports of their surgical outcomes so I decided to join the party. I hope no one will mind.
I've given quite a few hours of thought to the question "Do I regret having surgery in the first place?" and after much soul-searching my true answer is yes. There are several factors that play into my decision, pain being right at the top of the list. Prior to my original surgery, the surgeon said in no uncertain terms there was no guarantee the surgery would eliminate or even help the pain. The goal of fusion surgery, according to him, is to prevent the progression of the curve. If the pain improved it was a bonus. I was not awarded the bonus prize. In addition to the pain, I've developed junctional kyphosis above the fusion and arthritis below the fusion. There are other challenges but for the sake of time and because I do not want to hijack the thread I'll stop there. I will be more than happy (what does that make me, crazy?) to answer any and all questions. Feel free to send me a PM or I can email.

[foofer]

All of it useful

Hi all,

Really appreciate all those who posted the good, the bad, and the ugly on this thread.

Joy: I am in a similar boat- my curves are not as large as yours - 64T,65L, but may be progressing rapidly. Will find out a bit more in early May at next MD appt. I've been to two docs, one who measured 8 degrees less per curve, and a year later it appeared that I was progressing when measured by another doctor. The 2nd doctor, more renowned, measured the curves himself- I watched him. My feeling is that I did advance quite a bit, but now feels "stable" again. I am not in awful pain, but it does wake me up at night and does make me constantly uncomfortable, but nothing I cannot presently handle. I just finished a 3 day weekend working on a company project that involved a lot of fast-moving work, on my feet all day...14 hour days starting at 5 a.m., ending at 7:30 p.m., and then big dinners for a couple hours. Had to bring a backpack of each day's supplies as no access to one's "stuff", working at 12,000 feet. It occurred to me that having scoliosis w/o major benching pain is like dragging that backpack around, not having packed properly with even weight distribution. Too many heavy bulky items on the upper right and lower left (I have an S curve) and lightweight items in the opposition. Every day is a long day shlepping around my uneven backpack, aka my back, but the point is: I can do it. And once a year when I have to work on this April project, I surprise myself that I can still be on my feet for 14 hours and be a good contributing worker.

The point of this long-winded story is that I am agonizing over the idea of threatening the existence I can still manage. And I need to work. So I am extremely grateful to hear the good-news stories as well as the huge disappointments. I came onto this forum last November, and as others have noted, the stories have mostly been all successful reports. Hearing the "bad" ones is good for us to help with decision-making. If I decide to go ahead with the surgery, I will be armed with the truth, the best way to head for battle.

CSC, Doodles, Singer, Linda, Becky, Susiebee: Thanks for your testimonies and please do not withhold your experiences. You have no idea how much it helps to get the best cross-section of personal reports.

I hope others will post their stories here, both positive and negative.

Amy

[LindaRacine]

Hi Becky...

Thanks for posting, and for being so honest. While I was in my pain free (or reasonably pain free) post op years, I thought my surgery was definitely worthwhile. In hindsight, I'm less certain. I wish I had met a really good physical therapist (such as the one I found about 8 years or so postop) who might have helped me put off surgery for awhile. I'm almost positive that I still would have required surgery at some point, but I think that the intervening years have brought innovations that might have helped me have an easier recovery and a better long-term outcome.

With that said, I think that if one chooses a really talented, experienced surgeon, one can have an excellent outcome. I see them every week. I think I work for some of the most talented scoliosis surgeons in the world, but even so, we still have a small percentage of people who aren't happy with their outcomes, and some people who need revision surgery.

Anyway, welcome back.

Regards,
Linda

[golfnut]

Joyfull,
I only have occasional mild back pain, but have surgery scheduled for Nov. 1st. Dr. Lenke said that my prognosis is not good if I don't have surgery. I think if I had severe pain now, I wouldn't be second guessing myself. I have 3 brothers that think I'm making a mistake. My husband wants it to be my decision. I was feeling pretty good about making the decision for surgery, thinking that I would sacrifice 1 year of golf, tap dancing, etc., for better odds for an active life for many more years. I am a little worried about going into the surgery at age 60, although I think I'm in fairly good health. I have felt encouraged by all the positive stories of recoveries, but appreciate hearing some of the not so rosie outcomes. I went to the revision section of the forum one day and decided not to do it again! I know Dr. Lenke is excellent, but I'm still really nervous.

[joyfull]

Karen, I can really relate to your situation. It's so hard to walk into this feeling pretty good. My surgery is coming up in about 6 weeks! People here rave about Dr. Lenke, but Janet (Doodles) is now expressing some disappointment. Dr. Lonner is supposed to be excellent as well. I do know that Karen Ocker says that people can really die from complications from scoliosis, and I know this to be true. I suppose at some point it is a leap of faith. Joy

[JenniferG]

I have my very experienced surgeon to thank for my success. He specialises in scoliosis surgery in all ages and does several such surgeries every week. I am over a year out and pain-free and there's nothing I can't do, but I am not 100% convinced that I will always be pain or symptom-free. I live with the fear in the back of my mind that this might not last. I don't lift heavy items and I don't run - my only restrictions, and I just hope that my back will stay healthy until the end of my days. Never does a day go by that I'm not incredibly grateful and at almost 59, I make the most of every day in case my luck doesn't hold out.

I have just finished a business course and am starting up a small business, something I couldn't see in my future, a little over a year ago, so it has changed such a lot for me.

[Singer]

Just to add a few more thoughts to this discussion: the hardest thing for me to digest mentally is the fact that with or without surgery, my back would never have been "normal." Sometimes it's been tempting to think I'd have been better off had I not had the surgery, but then I'm forgetting how quickly my curve was progressing and how the left side of my ribcage was almost resting on my hips by the time I got straightened out. The first time I went shopping after surgery, I gasped at how great clothes fit, and I still get a huge kick out of wearing form-fitting clothes for the first time in 30 years.

When faced with progression and/or pain and deformity, it's often easier mentally to stick with the devil you know rather than take that (surgical) leap into the unknown. I honestly believe that had I not had the surgery, I would have been very twisted by the time I reached my 60s.

Also, on the plus side, I could never do things like stand at the kitchen counter to cook, walk slowly through a museum, or shop for more than 10 minutes at a time without having to sit down, and now I'm good to do any of those activities for hours. I can't and won't run, but I can hike up and down strenuous trails with no problem.

So I guess the bottom line is -- having the surgery may not be a cure-all, but NOT having it will not save anyone whose curve is progressing from big problems. One way or another, it must be dealt with.

[CHRIS WBS]

I had no pain from my scoliosis until five years ago when I reached 56. And then BAM, it hit me all at once. Over a two-month period it literally felt like my spine was collapsing. I would go to work only to leave two hours later to go home and collapse on my bed because I was having difficulty staying upright. That summer I lost 20 pounds because I could not eat out of fear over what was happening to me. I was told by one surgeon that my spine had probably shifted creating the sensation of internal collapse. How scary is that? I gradually improved and sought advice from surgeons. It became evident that I required surgical intervention if I wanted to prevent serious problems. This forum helped me tremendously. And I absolutely agree with Linda that choosing a talented and experienced surgeon improves your chances for an excellent outcome. I did not go into this surgery with great expectations, but my outcome is much better than what I had expected. I’m not going to say that there isn’t anything I can’t do now, because there are things I can’t do. I can’t get on the ground to plant my spring flowers. I can no longer back into a parking space. I can’t climb a ladder to change light bulbs on a high ceiling or paint and wallpaper. I have difficulty cutting my toenails and tying shoes. But for me the benefits I derived from surgery exceed what flexibility I may have lost. Besides the cosmetic improvement, I’m now enjoying being able to stand in comfort so I can do things like cook, shop, travel and socialize after work. While my surgery was rough and I found recovery a challenge, I realize though that I’m fortunate that I did not experience any complications or lingering side-effects. If I had a less favorable outcome, I’d probably find myself in the not-so-happy camp too.

[Singer]

Chris, your surgical success really tickles me because you were an example of someone who went into surgery with a lot of fear and loathing -- and came out happily surprised at the results. I'm so happy for you!

[Karen Ocker]

What if I had not had the surgery?

I know for sure I would have been severely disabled, on oxygen, and a burden to my husband and family.

Once I started getting easily short of breath it seemed that things rapidly worsened over months, not years. No matter how hard I exercised and did Pilates, it seemed I could not stop-even slow my rapidly deteriorating condition. This is why I have strong feelings about large curves needing attention-they do not stop by themselves.

When I consulted Dr. Boachie, about a revision--original surgery 1956-- he told me I would get worse and not to wait.
That being said I still have a 40 deg thoracic and 20 deg lumbar residual. The surgery itself did reduce my lung capacity because a chest approach was needed but it should not get worse since my curves are stabilized. The residual chest deformity stemming from my 100deg curve as a teen did not disappear with correction because my rib became rather pointed.
This is why I cringe when people wait so-long to address the issue. It comes from personal experience and nothing else.

I am totally pain free and delighted that I had the revision: T-4 to sacrum.

[CHRIS WBS]

Chris, your surgical success really tickles me because you were an example of someone who went into surgery with a lot of fear and loathing -- and came out happily surprised at the results. I'm so happy for you!

Thanks, Chris. Yes I am quite happy with my results. And I think that's true for most people.

[briarrose]

I wanted to add my thoughts and experiences to this thread as well. Overall, I am happy that I had the surgery, though not 100% happy with the outcome. I do have pain everyday (shoulder blade area, and right at the base of my fusion), which is anywhere from mild to debilitating. I was given a 60% chance that my pain would disappear, so I did not really expect it to completely go away. The pain is slightly less than it was pre-op (I no longer have the curve pain).

Another issue of mine is that my scar is wide and bright white. This really upsets me because it runs the length of my entire back and I know that most people have thin, faint pink scars after awhile. I don't know why this happened. I also have a rash on my back that occurred 3 weeks post-op that has yet to go away.

I also feel very limited in the things I can do. I physically cannot lift much weight without feeling some sort of pulling on my hardware, but maybe this is normal. I try to exercise more, but the pain will usually make me stop and then I give up all together.

I'm sorry I have so many negative things to say. I do like that I am much straighter and I no longer have a rib hump. I don't have to worry about my spine curving anymore which is a huge weight off of my mind.

The advice I would give to those facing surgery is to not expect a miracle. Things probably will improve, but it's not an easy, quick-fix.

Shell

[Doodles]

Shell & all--
"Don't expect a miracle"--great advice. I don't think anyone would do this without knowing it was absolutely necessary. I knew I had to have it done without a doubt. Dr. Lenke is an amazing doctor. I think mine was so far gone and years of deformed ribs just couldn't be recitified.
I actually had my year check-up today in St. Louis. I asked specifically about my rib hump and that was basically what he said. He said it actually may have gotten a little worse since first few months after surgery which is what I had been seeing. He said it can sometimes "pop up" a little but shouldn't anymore. Since right side is so obvious the bottom left seems even more caved in too. (Still nothing like before surgery.) I think I was getting kind of discouraged thinking I was the only one who still had a rib hump after surgery. I asked for a measurement of the hump--somehow they didn't take one of mine before surgery but he thought it was about 20 based on my curve. Now it measured 12. I had never heard of this measurement before. Perhaps I should have asked more about rotation since maybe that's almost more of what I'm seeing. I don't know. I look OK to anyone if I have clothes on. Just stay away from bathing suits and skinny tops--and don't look at my back in a mirror.
Shell, your comment about the scar hit home too. Mine is very wide at top and the whole thing is very red and I've had a very slight rash forever too. Zertec and various Rx's from dermatologist didn't really work for long and I finally gave up on that. I later asked the resident with Lenke and she thought it might lighten a bit yet but I got the feeling after a year it's pretty much set??
Now I can supposedly bend (which they had me do and I'm horrible), twist and lift. I've done PT and been at gym all year but he thought I should get some pt to help with flexibility. I'll definitely give it a shot. I'd love to get back to classes for pilates which was approved but I have so much trouble even getting on the floor I can't imagine I'd do anything but lie there like a turtle.
Guess this turned into my check-up info post! Janet

[naptown78]

I am one of the people who has now been on both sides. My orig surgery almost 2 years ago was a disaster. I did feel uncomfortable posting among all the success stories and felt very negative every time I did so. But I was looking for answers and support...I ended up having a revision surgery one month ago which has been so far a big success. I do think it is very important for people looking on this forum to know both sides of the story, both the successes and disasters.