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Knowing when to stop

JohnJJohn Posts: 964
edited 06/11/2012 - 8:45 AM in Back Surgery and Neck Surgery
Knowing when to stop future intervention is always a difficult decision even when we have all the perceived facts before us, and we are driven with that just one more attitude, that we all need to survive. Although it is understandable to perceive that eventually a satisfactory outcome is possible just for the want of trying, that reality is not always possible. From my experience the more opinions you get only seem to confuse the issue and rather that bring a collective agreement, we go with the expectation that the next review will confirm the last one and each consultation at times brings another complexity to the issue, rather than any conformation we expected. The desire for any improvement does sometimes cloud our judgement and every intervention has compatible balance of success and failure initially.

We would all like to think that we could be improved and perhaps we are looking for an opinion that agrees with us rather than the truth, it was not easy for my professor to tell me that this would be my life and any additional surgery would be of no use.

I admire all those who have tried in challenging and perhaps limited chance of improvement for trying, it is not easy to keep going with the same enthusiasm when consecutive and accumulative surgeries prove ineffectual. Pain is about us and we should not be grab any option at the risk of making things worse, we all try to be positive and that is necessary, we should not blame ourselves when things go wrong we have to live with the consequences.

Knowing when to stop has to be right for you and this is my life and I am trying my best to live it, however progressively restrictive it is, I take some comfort in what I can do and am mandated to endure. Stopping was empowering and getting off that constant pressure to find an amicable solution, it has not been the easy option and I have no regrets. The talk of improvement was not always matched in reality as the hope faded and the pain increased. It is not defeatist or resignation to the inevitable, it takes equal courage and resilience to stop in knowing more of how the future will be, irrespective of our expectation or projected fears.

It is right that we should use every option available to us in finding a solution and getting the expected improvement from any surgical intervention is hard fought and eagerly awaited. Every day I am reminded of the decision I made and always think of how things may have been different or even less painful, my pain is not managed at an adequate level and I am questioning the reality of my ability to continue to work where standing up is becoming increasingly problematic.

I wish everyone well in trying to find that illusive improvement be that surgery, PM or treatment, I am evidence that surviving is possible and making the best of difficult and challenging days, now and in the future.

Take care John.



  • i also made the decision to stop going from doctor to doctor searching for a surgery to make me feel better. after being told there was no surgical solutions, i decided to quit looking and live with my pain as it is and is going to be... i found the decision to be liberating in that i was free of doctors and that constant search for something better! now, i find the "better" in my husband or my dog or the sunset.. i have time for that now.. and so much more! yes, i go for adjustments in my medicine, use other conservative measures and for now that keeps the pain at bay! i am so happy to be living life now instead of searching for life.. for those still looking, i wish you all the best and hope you find what you are looking for.. deciding to stop is as personal a decision as having surgery! John, i wish you peace with your decision and all the best in your quest to keep walking! Jenny :)
  • John,

    You make a interesting point of when do you continue to search for answers or say it is what it is and I need to live with it. I for one thing you have to plato that the situation isn't getting worse, but it is just there as a constant reminder. When issues continue to get progressively worse I think you have to look at the decision of the do nothing approach and wonder if the end result will justify the means. I am not one to doctor shop and look for different doctors. I have a team of doctors I work with and if they felt the surgery wasn't warranted by the films, I wouldn't continue to look for a surgeon to just cut, or give me the answer I want to hear.

    In the same breath of those words I have to ask myself what are all these meds doing to my body now and in the future. One can practice healthy eating habits and what not but then say 5 years or even more they discover that ooops those medicines causes other issues. Or do those meds cover up other pain issues with something else that could be going wrong.

    I think each person has to look at their individual medical situation and make decisions based on how it impacts their lives and the cumulative effects on the family. I look at reviewing my medical part of my life no different than reviewing my long term goals or financial position. When we enter the world of chronic pain it just becomes another facet of life we need to review every now and then and make decisions about it as any other aspect of life. So while one may choose today I am going to learn to live with it and move forward doesn't mean that plan is going to be the same six months from now. As with everything plans are subject to change, things happen, life changes. But you are absolutely correct that we all have to make the choices that are in our best interest.
  • I think you touched on a great point here, albeit possibly a very sensitive one for many others. I think most every one of us chase that elusive magic fix at one point or another and it takes quite a bit to open our eyes to the point you bring up now.

    My other concern is for those who's life has become defined by their injuries, their surgeries and their pain. Without those, they are just another face in the crowd. So for them, to get to the point you are talking about, they have to be willing to give up or "surrender to win". Some people consider it just learning to live with it, but I think it goes way deeper than that.

    Picture the alcoholic or the drug addict. In order to survive their addiction, they have to surrender to the fact that they have a problem and then learn what it takes to "live with it". I learned early on, that there are people who are addicted to surgery or addicted to being a chronic patient. What gets confused, is where do you draw the line between chasing down a solution to your pain and disability or falling victim to forever chasing something you can't ever really achieve because now that's what defines you.

    For instance, am I "C" the aircraft mechanic, or am I "C" the one with the messed up spine. It's my choice. If I can still differentiate between the two, then I believe it is manageable. It's when I can no longer identify or be "C" the aircraft mechanic, that I succumb to the merry-go-round of chronic pain and chronic problem. (I certainly hope this makes sense) So I think emotionally we have to reach a point of maximum medical improvement, in order to heal, stay ourselves and live a happy and hopefully productive life.

  • I greatly appreciated the point you made in your letter.It is something we all need to keep in mind in our venture to be better.Fix only what we need to get by and live with the rest.Make the best out of our situation and enjoy our lives for all it has to give.Life is certainetly short and it would be a shame to spend what we have left trying to search for something that may never be there.We all have to make peace for "OURSELVES" no one else.Do what you must to be able to live your life and except the rest.Thanks again sometimes I know personally I get very wrapped up in the moment. It sure helps to stop and take a look around and SMILE it's going to be ok. >:D<
  • dilaurodilauro ConnecticutPosts: 9,859
    which is so very valuable for anyone, and even more so for patients with spinal problems.

    I think one thing you hit upon has been an area that has been a hot button to me for years.

    That is, keep on going from doctor to doctor until you hear what you want to hear and get the fix that you want!

    I remember my father over 15 years ago, going from one doctor to another, looking for that one spinal procedure, or that one pill that will eliminate his pain. He went to so many doctors, finally settling on one that did a procedure for a morphine implant.
    What was suppose to be 'a cure all' turned out to be a nightmare.

    I see similar actions here. People sometimes just do not like the truth. They only want to hear want they want to. So they will leave many doctors in the wake, claiming they all knew nothing and continue to find someone who agrees with them.
    Maybe that would be a witch doctor/medicine man.

    Dealing with life is no different. We all have to understand our boundaries and we all need to understand the differences between right and wrong.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • It does take a lot of courage to know when to give up. It is disastrous, however, to give up when there is a chance to live more comfortably. I have every spine surgeon in my town tell me there was no way they would do a three-level fusion. They all turned me down, told me to deal with it, maybe get an SCS. I didn't give up. I went to a research hospital, had the three-level fusion, and I HAVE MY LIFE BACK! Yes, I know that I have to be careful. Believe me, I don't want to blow another disc. However, before I had surgery, I couldn't even sit and pit cherries without gasping in pain (pathetic, right?). I just came in from playing ball with the dog, picking berries, and weeding the back flower beds. I feel terrific! Yes, I watch how I stoop to get the ball. I'm careful how I reach for the berries. I use a kneeler/bench to get up and down to weed. But I am virtually pain free. I'm so glad I didn't give up.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • While I understand futility and facing up to some harsh realities. I'm afraid my brain would never agree to stop. I think I understand what John is trying to say. However I think I like Linda's answer better. That was not doctor shopping. That was pressing on when some would give up because her surgery might be too difficult.

    We all stopped playing tic-tac-toe because we learned no one wins. The perfect example of futility. However that game has a defined set of rules that don't change. That is not true of life or medicine. Advancements in medicine happen all the time. Maybe one will be for you, maybe not. But to give up. No way. I'll go against that and repeat this :
    . . . "Don’t Give Up. . .Don’t Ever Give Up! ® "

    Most of you should know where this quote came from.

  • Howdy Graham! *hug*

    John I fully feel much as Graham has posted. My body seems to know better than my conscious brain when something isn't right. The conscious brain side of me isn't ready to stop trying to find the right doctor.

    I think even if I was given a 'terminal' diagnosis one day, I would seek other doctors to find out what can be done. Granted we where all born with a terminal disease - you know, life expectancy. (G) I guess at this stage of my life, and with negative health changes - so far spine/nerve related, I will continue to see if I can get to a 'better me' someday. Great thread though John!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • If Jimmy V and then Randy P can hang in there and not give up, when their odds were much worse than ours, I say we still go for it.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
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