Help in the decision for surgery

[jrnyc]

i swear that if i needed surgery down to the L3 level, i wouldve done it by now! instead, mine was to start at L4, though Dr Lonner just changed it, so apparently now, the side incision will be at L1..even higher...that doenst make me happy, but so be it! it is the fusion TO PELVIS that totally freaks me out, even now with the "minimal invasive " technique...every time i take a shower now, i imagine doing so but not being able to reach my back...shave my legs (in the shower), or reach other lower areas! every time i sit up in bed, i imagine having to log roll...by the way, can any "pelvic people" tell me whether log rolling is required forever, or whether you can eventually bend from the hips enuf to sit up in bed when arising in the morning...???? every time i get in and out of my car now i imagine doing it with the rods in my back and screws in my pelvis!...every time i pick up my 10 pound angel puppy...i imagine...well, you get the idea...
i know that there are problems with thoracic surgery...heck, i've got a 42 degree thoracic curve now and there is no guarantee it wont need upward fusion extension one day...but i just see the post surgery problems as different with pelvic fixation...

jess

[lray]

It took me over a year to gather the courage to decide to have surgery, and even then I second-guessed myself like crazy. Like you, I was afraid of creating more problems. It would have been so much easier if it were a life-and-death situation -- it has always floored me that such a huge surgery is considered "elective". It also would have been easier if I'd had a crystal ball and could have seen what I would be like in 10 or 15 years down the road.

In the end, it came down to getting multiple opinions, doing tons of reading, and getting a gut feeling. The evidence was stacked in favor of my back getting worse and worse over time, so I took the plunge. It hasn't been easy but it has been worth it.

I could have written those words myself! The only difference is, is that I haven't taken the plunge yet, I will in 5 months, but I hope I will will look back and say "it was worth it" as well.

[ADMoul]

I agree with Chris about having that "gut" feeling about when it's the right thing to do and I was someone who thought they would never do this surgery. In my case, pain was the deciding factor and that I wanted a better quality of life than I was experiencing pre-op. The more accurate information you can gather, they better prepared you are to make the right decision. I knew the first Dr. I saw was not the right person and there were folks on this forum who pretty much said "You need to get that fixed, Find another Dr." So I did and I got it fixed and it was one of the best decisions I've ever made. Yes I'm still stiff and achey at times and my hip hurts and I know recovery is a long process, but I feel like a new person. Best of luck to you.

[loves to skate]

i swear that if i needed surgery down to the L3 level, i wouldve done it by now! instead, mine was to start at L4, though Dr Lonner just changed it, so apparently now, the side incision will be at L1..even higher...that doenst make me happy, but so be it! it is the fusion TO PELVIS that totally freaks me out, even now with the "minimal invasive " technique...every time i take a shower now, i imagine doing so but not being able to reach my back...shave my legs (in the shower), or reach other lower areas! every time i sit up in bed, i imagine having to log roll...by the way, can any "pelvic people" tell me whether log rolling is required forever, or whether you can eventually bend from the hips enuf to sit up in bed when arising in the morning...???? every time i get in and out of my car now i imagine doing it with the rods in my back and screws in my pelvis!...every time i pick up my 10 pound angel puppy...i imagine...well, you get the idea...
i know that there are problems with thoracic surgery...heck, i've got a 42 degree thoracic curve now and there is no guarantee it wont need upward fusion extension one day...but i just see the post surgery problems as different with pelvic fixation...

jess

Jess, I can sit up in bed without logrolling but I shouldn't. Logrolling puts much less stress on your entire back whether you need a fusion, don't need a fusion or have a fusion. What in your mind is so horrible about logrolling? People do sit ups as an exercise. Instead of doing sit ups, they should be doing crunches because they put much less stress on the lumbar spine and strengthen the abs just as well. Instead of squatting, we should be going down on one knee. We should all be learning how to take care of our backs and knees and all our joints because we all are aging. Is your thoracic curve structural or compensatory. My thoracic curve is almost nonexistent now after two years. It really amazed me when I saw my last x-rays.

[debbei]

Sally is right, logrolling is no big deal. Sometimes I still do, other times I do not. It gets to be second nature.

[jrnyc]

ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

[debbei]

ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

It is not effort intensive at all. I was more aware of my back when I was in pain prior to surgery than I EVER am now.

[naptown78]

ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

Jess,
In general I don't think anyone can guarantee you this. Everyone has different outcomes from surgery. Some of us still have pain and stiffness after surgery, some have no pain at all. In my opinion, once a back patient, always a back patient...You will always have to take care of yourself knowing you have a "special back".

[jrnyc]

ughhhhh...OK...thanks for the replies..i get it...too bad...in my idea of heaven, we all have straight backs and when we walk, we float just above the ground...no weight, no pain...ahhhhh....that would be great!

jess

[DaveWolpert]

JamieAnn, I very much can relate to your situation. At age 30, my curve was 49 degrees, up from 36 after I wore a Milwaukee Brace for two years as a teenager. My curve was clearly progressing, though at a rate of less than one degree per year, and like you, I wasn’t in pain, per se, but my back was often uncomfortable and this got annoying.

There’s no right or wrong decision in terms of whether or when to have surgery in your case. I think the most important thing is to realize that time is on your side. You’re young, not experiencing pain, and your curve is still under 50 degrees. If you wait to have surgery in 5-10 years, your curve might be anywhere from 50-60 degrees but you will most likely still obtain a high level of correction and have a relatively quick recovery. There’s no “penalty” for waiting and monitoring your curve for a few more years and getting several additional opinions from surgeons.

In my case, I chose to go ahead with surgery at age 30 because I had recently lost my job (so had plenty of time to recover without worrying about getting back to work) and had excellent health insurance. Also, I just wanted to get it over with while I was still young, didn’t have a family, and was in great general health. Had any of these circumstances been different, I might have waited. Seven years later, I have no regrets.

I also want to acknowledge what others have said: there are no guarantees, either way. Your curve may or may not progress. You may or may not develop more back pain, whether or not you have surgery. You just can’t know. All you can do is make the best decisions you can, given the information you have—and trust your instincts!

[JenniferG]

Jess, I haven't log-rolled since hospital. The nurses showed me how to do it then the doctor had a bar attached to the right hand side of the bed to pull myself upright. It was easy, mind you, I had kayaking muscles. So I don't remember ever log-rolling other than as an exercise to see what it was like.

Also, I think a lot less often about my rods than I ever did about my sore back. I'm sure when you've had your surgery, you will know what I mean.

[JenniferG]

David! How lovely to meet you! Your book was a brilliant resource, pre-op. You were spot-on about so many aspects of this surgery. Thank you so much.

[jrnyc]

Jen....thanks so much for the reply! it really helps to hear such positive comments from a "pelvic person"!

David...so nice to see you on this forum! wonderful book! informative and helpful...i'm so glad you gave your opinion to JamieAnn...

JamieAnn...i so much agree with David Wolpert...there is a chance you could end up in pain after the surgery! and you have time to see what happens because you are young...it is a major major operation!! and no guarantee what the results will be!

jess

[LindaRacine]

Look who the cat dragged in! ;-)

Welcome back Dave.

[Doodles]

JamieAnn--I hope all this information others provided is helpful for you.

David--Thanks for your wonderful book. It was one of my first steps in research which I reread before surgery. Had my husband do it too and he became a great caregiver. (I'm still a little surprised!) Janet