Success rates and trade offs – what are your expectations

[dshobbies]

Prior to my own 3 level surgery I asked, on ADRsupport, of those considering their surgeries successful, what can they no longer do? Of the responses I received only one person claimed no limitations. This surprised me because of all the positive posts I read no one ever claimed any residual impairment.

Even after my first disco/lami surgery my doctor told me six weeks post op that 100% had a different meaning. Life after ADR surgery also redefines this 100%. Of course there are those who will walk away from this surgery with the only change in their lives the possibility of setting off metal detectors. However, the majority of us, those who consider our surgeries successful, continue to have ‘something’ and that something is different for us all.

Coming from a standpoint of having no life, waking in the morning to go sit in a laz-y-boy all day, not going out, unable to sit at the dinner table and then leaving my chair to go to bed, any improvement would seem like a miracle. However I am not a very physical person and my hopes were basically mild. I wanted to sit and work on my artistic endeavors. Picking up my grandchildren and cooking my family’s favorite meals did not require a great amount of physical stamina. Well, with few exceptions, I got my wish.

I know of another woman who is extremely physical and for her anything less that her previous 100% simply wasn’t acceptable. She would/could not endure any daily pain, no matter how mild. Her capacities are much greater than mine. Her residual symptoms are much less. She did not get her wish.

There are also trade-offs. If you do this, you might suffer that. If you overdo there will be consequences. The surgery left me with nerve damage affecting my left leg. This causes quite of bit of limitations. I could take Lyrica (or Neurontin) to lesson these weaknesses and live with almost no daily pain as I did for two years post op but I lost myself. I had no interest in those things that previously lit my world. I chose the pain and limitations and am most pleased to report my interests have returned. My limitations are a constant in my life but the pain varies and most often is quite tolerable. However, I must also tell you, on those days when my symptoms are more acute I second guess myself. I hate taking pain pills, muscle relaxers and anti-inflammatories but without Lyrica, they have become a necessary part of my life. The irony is when I take Norco, my pm’s preference for pain, (Vicodin with less Tylenol) I can’t paint or write anyway so during the day I usually choose to deal with the pain.

So after you’ve done all your research and have been told you’re a good/decent candidate, you should also ask yourself what are your expectations. You already know that ADR surgery comes with no guarantee and revisions are difficult… but only a very few are still able to scale the Swiss Alps or compete in a triathlon. What rate of success would recontent you with your life? Then discuss this revelation with your doctor to find out if what you expect is reasonable given your specific circumstances.

If after addressing this issue that few people talk about, you decide to forge ahead with ADR surgery, I do wish you the absolute best luck possible.

Dale

[sahuaro]

So well expressed, as usual, Dale. I would only add that data concerning post-ADR limitations are important because hopefully the next generation(s) of spinal treatments will address these.

[Maria]

Dale,
I remember before I started pain meds and ESIs I was really homebound and in pain lying in bed crying nearly 24/7. Hub had to cart me around in the back of the SUV to go anywhere and I couldn't even shop for 10 mins w/o feeling like I *must* lie down due to pain.

Just this morning when I couldn't find my address book (yes I should have them on the computer but don't) I was thinking of how forgetful I am, how little I actually think anymore let alone read or remember anything I do read and I just wondered about the GREAT tradeoff of being relatively pain free much of the time, being able to walk several miles at a clip or hours, going out nearly all day long and not being in pain and so on so forth.

The trade off is my mind for my activity level at this point. Perhaps I do not push myself hard enough since I feel like a lady of leisure because when taking care of my father's affairs in Fla. I'm much more thoughtful.

Now my 18 y.o. step niece is w/me and I'm helping her with school enrollment (she has some special needs/dyslexia and so forth) and it tires me out but I'm so happy that I can actually get around and help her out, take her a few places as compared to being stuck in bed.

It'd be great if when having surgery fixing one problem wouldn't potentially lead to another. That and not having to take the degree of pain med that I do for relief. I have experienced the great relief of success w/first spine surgery and the great let down of a horribly failed 2nd spine surgery. This most definately has played a part in my decisions/expectations and willingness re trade offs.

Current trade off is pharmacological pain relief and a certain degree of functioning for lack of mental clarity. I've felt far worse off re pain yet far better off re cognitive functioning. AT this point I know what my body can reasonably do.

Surgery may always be an option for my spine (if bone density allows) however ADR may not always be surgery of choice for me with continued waiting. Another trade off re time so to speak..

[KL Aguilar]

I had a three-level CED (minimally invasive surgery) in January of 2000. My hope was that I would be able to regain my life. I did not expect perfection. I wanted to be able to live a normal life and expected some limitations. I was very happy with the results of the surgery. I was told not to lift, carry, push, or pull heavy objects. I was told to have an ergonomic chair and work set-up. For the most part, I followed those instructions. On my own, I gave up running because I believed the constant jarring would not be good for my spine. I thought about risks before I did things that required a lot of physical effort and sometimes did not do them because of those risks. I became less active and gained weight. A few times a year I would suffer bouts of muscle spasms. Other than these limitations and the muscle spasms, my life did return to normal and I was 100% pleased with the choice I had made re CED and the surgeon. I am STILL satisfied with those choices.

However, in the late summer of 2006, I lifted a heavy box over other boxes and turned to lower the box and place it on a cart. I felt an immediate pull, but did not realize what had happened. Over the next few days I felt worse and worse and was soon in the worst pain by far of my entire life. I developed a dropped wrist and a twisted, paralyzed hand that is sometimes referred to as a claw hand. An MRI revealed a new herniation at a fourth cervical level and that the injury had worsened the three discs that had already been operated on (the compressed nerves that caused the claw hand were at the location of the already operated on discs but prior to the box incident I hadn't had any hand problems since the surgery).

Now I am about to undergo spinal surgery once more, but this time it will not be minimally invasive. My hope is to once more regain my life and to get back the use of my hand. But more than that, I realize I HAVE to have surgery because of the severe spinal cord compression. And regardless of my hopes, I do not expect to regain my life even to the extent of a few years ago. I expect that I will be semi-handicapped the rest of my life and that the best I can hope for is that the surgery will be successful enough that I will not need further surgery. I am having a laminectomy in the hope of avoiding a four-level fusion. I am not a good candidate for ADR due to facet problems at my worst level.

So I do not expect perfection. I know I will have limitations.

[fireyangel76]

So well put Dale!

I consider my Dynesys at L5-S1 a success to the extent I am not in bed on ice and drugs for weeks at a time. I still have a great deal of limitations as in work, sports, lifting, bending, ect., but I am so much better than I was. I can again find enjoyment in life that I wondered at times if I ever would again. And to the extent I can leave my house, go on short trips, shop till I drop (although I drop fast) I am so happy with my decision and think of myself as a success story.
If someone else were to have my limitations they might be very disappointed and think of it as a complete failure. Just as beauty is in the eye of the beholder. success is entirely subjective.

[ans]

I would be incredibly happy if I could work out for tone/endurance, hence light and to do 1 hr. aerobics/day e.g. laps in the pool or handle one aerobics machine like the elliptical.

[fuzzy]

My expectation was as simple as being able to sit in an airplane or go to a movie with my wife with out killing pain and "my feet falling off sensations", burning, numb, ice cold etc creeping up my legs and the inabillity to get up, being in real pain and walking stiff as a board every time I get up. This was at the best of time as of last. I was hoping for relief from the fear of one little "wrong" movement causing a "bada bang!" in my lumbar and severe pain and completely out of service for weeks. Lather, rinse, repeat.

The surgery was sucessfull. No more stiffness, much easier to get up after sitting, longer endurance in car and almost no pain killers. No more badabangs.I still have a lot of the same problems wih my feet, ice cold bad burning tinglings etc and sometimes pain down my right leg. At the same time I could probably start a chainsaw and use it, kick a motorcycle starter and be able to hold motortcycle upright or ride over a bump with no worries. I am not doing these things in part due to the remaining problems but also to not take any more long term chances on that hardeware then nessesary. So, 100%, I an not sure, but even if my other problems were to get resolved with a neck surgery as planned I would still be very happy with the current out come of what seems realistically maybe 50% as the pain got removed but the other problems remain. Still, it is acceptable to me and what I was willing to accept.

[Cheryl]

I never really expected to be back to my old self of running 5 miles a day and pretty intense workouts. Of course that would be ideal. I just hoped for the best and that I wouldn't end up worse.

At this point (5 months post op) my low back is definately better. I have long stretches in the day now where I forget I ever had a low back problem. Prior to surgery I woke up everyday in pain wondering how I would get through the day. However, due to the cervical pain that I developed at one month post op I ended up with a trade off in pain because now I have that same feeling every day all day about my neck.

Everyone asks me would you do it over again if you knew the outcome. No, I can't say that yet. I know I'd be living in limbo wondering if I should have done it and due to that feeling I have no regrets.

For me it was really about taking action. I had done it all and couldn't bear to do nothing. I'm wondering what I'll do about my neck though. I might be able to do nothing this time because I don't want another "trade off" in another part of my spine.

Or Fuzzy I might meet you as a frequent visitor in Germany.

[nomorepain]

6 years and counting, 2 prodiscs in the US Trials 2002.
I also never expected to ever feel as good as i do now, my recovery was ssssslllllloooowwwww, and i mean slow! I do have lifting limitations, my surgeon told me never lift anything over 40-50lbs, and i don't. in fact i limit myself to 30 or 35lbs, as i age i notice thats plenty. As far as other limitations, i don't have any, my quality of life, my mental stability, is now amazing after a life filled with chronic back and leg pain, i still cannot believe how good i do feel, and still sometimes have to pinch myself to see if this is reality or just a dream.......it's been an amazing experience, and things just keep getting better and better as time goes on! like my name states....nomorepain!

[fortitudine]

Okay, so here's my dilemma.My c-spine is a mess. I haven't had surgery. I am 100% fine! NO PROBLEMS. I can do everything I want to as far as my spine is concerned. I feel good. I cycle as much as possible in the summer. I like being able to turn my head and look behind me for traffic.
BUT
My MRI says my c-spine is compressed at at least 2 levels. Docs recommend surgery at at least 2 levels. Probably at least 1-level fusion, maybe more. Apparently there is severe facet arthrosis at one level too.
I was first diagnosed over 4 years ago.I have been watching and waiting. Nothing has happened in the interim. But apparently the films look worse.

I am terrified to have any surgery and end up being left in pain. I had a total knee replacement last year, and while my knee feels way better, I still have lots of pain. I can deal with it because it is a vast improvement over my previous situation.
But ANY pain after neck surgery would be a BAD result for me. And there are no guarantees.WHAT DO I DO?

[dshobbies]

Fortitudine,

I agree that you've got a problem. Common sense dictates that you don't fix something that ain't broke but it is broke, you just have no pain which usually is the guideline.

Would postponing the surgery cause adjacent discs to deteriorate? Would postponing cause nerve damage or some disability? Could an emergency situation develop? Specifically what are the consequences of waiting? Pain is a huge motivator. Without it what is there to be gained from doing surgery now? These are your questions. If there is no consequence and you're not in pain, voila! End of difficult decision. I do suspect that the answer isn't that simple though. Is what might happen a good enough reason to risk surgery? How many doctors have you seen? Do they all agree on the treatment? Do they all agree on the dangers of waiting? Fear is also a huge motivator so until you're satisfied that you have no other alternative perhaps waiting is your best bet.

I hope you get the answers you seek but...
Good luck, Dale

[Maria]

That'd be a difficult call. If it's looking like I'm going to have significant damage (permanent) by waiting that might make me think seriously that I should have the surgery but that would have been before my failed L4 percutaneous discectomy.

Now I'd be hard pressed to do anything without any symptoms and being completely pain free and not limited in any manner in terms of activity.

Again, it's going to depend on the number of surgeons consulted and what they say with regard to actual necessity for surgical intervention (weighted with what I feel like doing now). Is this something that is going to save me from spinal devastation?

I just don't know what I would do...