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i feel like i am being pressured

strakerstraker Posts: 1,829
edited 06/11/2012 - 7:44 AM in Chronic Pain
in to an operation that may not even work .my appointment was cancelled the other day from the 15 june to the 2 july ,but i have found that my mum /brother wife and other s are putting pressure on me to go ahead with this operation they dont seem to realise just how big this is and if it all goes wrong its me that's left with all the 541T not them .they talk about it as if its like having a tooth filled !! and they can't understand my reservations my brother {who i hardly ever talk to } was on the phone last night and he was going on with his self as if this operation was nothing and why am i worried then he launched into the ..you read too much on the Internet crap!! i told him i wanted to have as much knowledge as possible .but i am getting the ...your glass is half empty crap from people that i thought cared about me .now i am not so sure ..i don't think that they realise that a multi level fusion is not a small thing and i should be worried about it .i could go on for ever but you all know what i am getting at ..any one here had a similar experience from so called loved ones?


  • The first thing I thought of when I read your post is that your family seems very caring. I say that for several reasons. First, although it seems like they're "pressuring" you into surgery, maybe they want this so much because they hope that this is something will finally help you. Second, maybe they do know how serious it is, but are they going to say that to you? I really doubt it.

    Many times the way people handle and say things comes off different to the recipient than it's meant from the person who is giving it, if you know what I mean.

    Maybe they're as scared about this surgery as you are and are trying very hard not to show it. My husband was that way before both surgeries, but it was afterwards that I found out how he really felt. Then he was scared for me, said what an awful thing I'd been through, took care of me and he silently prayed that this would be the end of my spine problems.

    It's like the post that Ron just put up in Depression and Coping (The Weight of it All) - we don't know what's going through our loved ones minds while we deal with this and they're not very good at sharing it, and sometimes when they do try and share their feelings, it comes out totally different than what we really need.

    I can only imagine how difficult it is for your family to see you in such pain day after day, not sleeping and hurting so much. I know that I have no idea what goes through my husband's head when I'm having a rough day or two. He just checks to make sure I've taken my medications.

    So maybe you can try and think that they really just want you to get better, somehow, some way, and that they're putting all their eggs in the surgery basket because like you said before, this is your last hope to get better. You're right - it might not work and you could be left with who you are now or worse. It's still your decision, but maybe you can give them the benefit of the doubt and think that they really only want you to get better and have a life again, and don't want to scare you any more than you already are by talking about how serious it is.

    So, those are just my thoughts. I know it seems one way to you, but there are two sides to every coin and maybe the other side is different than you think.

  • My family has actually gone the other way...I'm about to have my SCS trial and my family has been pretty vocal about the fact that they are not necessarily supportive of this decision and are going to have a hard time accepting it if it works and I get the permanent one...It's not that they don't want me to do it, but more just the idea of it is pretty hard for them to take. Understanding this has helped me not be offended by their reactions to some of this, so maybe trying to see it from your family's perspective would be helpful as Cath suggested.

    I'm sure your family sees this as the chance for a fix. I think unless you've faced spine surgery it is very hard to understand that spine surgery is so different from other surgeries- it's unpredictable as far as outcomes and the risks are very real. I'm not sure though, that trying to explain that to them will really make any difference because unless you've been here I don't think there is any way to appreciate just how hard of a decision it is.

    My one thought is maybe you could try to ask more directly for what you need: Are you needing support? Empathy? You could also take the approach of telling them how their reactions are impacting you. Something like "When you dismiss my concerns about the surgery I feel like you're not listening to me and right now what I need is for somebody to listen and try to understand how hard this decision is." I think sometimes people don't know how to react or how to best offer support. Being direct might help guide their reactions and might help clue them in that this is a big, serious decision. I would think that would be more helpful than just trying to explain about the risks and what not because they'll probably react more to you on an emotional level than to just facts...
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  • Tony I think they want you to get better. We never want to see our loved ones in pain. Also they are probably trying to ease your fears. I'm sure they sense your uncertainty and think that by making it seem easy you won't worry.

    You are the only one who can make this decision. No one can pressure you. Only you can do that to yourself and that sounds like what is happening.

    My way of coping is to pretend that things that are out of my control don't exist - at least for the moment. I don't agonize over decisions until I have to make them. I don't guess at what the doctor will say before the appt. And most importantly once I make the decision I don't second guess myself. I'm not avoiding things, instead I choose to not drive myself crazy over things I can't control.

    Remember these are the people who love you. They may be annoying but they are well meaning.
  • Well, I kind of see it more their way- not pressuring you to do it, but more hopeful that you'll get some relief from this surgery, and really thinking that you have got to do something, because you can't go on the way you are. But of course, you are right too, "something" doesn't necessarily have to be this. This just happens to be the option on the table at the moment.

  • I am sure they have your best interests in mind but straker is right on several levels..

    1) They do not understand the pain he is in.

    2) They will not have to live with the consequences if all does not go well.

    3) They think it will be a walk in the park. Have operation, next day go jogging.

    My only experience that comes close was the discogram. While the doctor pushed for it I knew it was not something I was crazy about. My wife came with me on that visit and she kind of pushed me into it. Thinking I was making too much of it.

    Well I had it and my wife apologized for pushing me to do it. I said it was not her as it was my decision. And straker you have to be of the same mindset meaning that you know the real deal...they do not and this is a decision you need to make cause YOU WANT TO DO IT!!

    Also if you decide not to, do not let them give you crap about not doing it. Do not give into the pressure...stay strong and make the decision you want.

    I still have not recovered from the discogram as I was still better before it and that was now 4 weeks ago. My wife is not living with that..I AM!

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  • I know how you feel. Being in so much pain and facing the possibility that you will be stuck with it, or that it will get even worse is terrifying. Our families cannot possibly imagine what is going through our minds. I don't think you read too much on the internet. You are right to keep yourself informed. You know that I have had a successful outcome with my three-level fusion. I am glad I found a very skilled surgeon to take care of me. I think your family probably feels confident that you have found a really good doctor and are so hopeful that you will be able to put all this pain behind you. They want what is best for you, but they can't possibly understand the levels of pain. Try to cut them some slack -- they no doubt cut you a little in hearing about your situation.

    All the best,

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I am sure most of your family has the best of intentions and they just want the best for you. From some of your other posts I have seen it looks like you are pretty miserable. I'm sure your wife is struggling with you being in so much pain and not sleeping. I understand that you are in a really tough spot you are scared to go forward with the fusion because there is no going back. It's your body and you've got to be comfortable with your decision. I bet if you explain your concerns and the feelings of pressure to your family they will back off. I am trying to put a fusion off myself and someday it's probably going to be the only option I have. It's always in the back of my mind and I just like you want to make the right decision. I wish you the best and hope that your able to take a deep breathe weigh your options and make the best decision for yourself.
  • Tony,
    You are right to be cautious and it is you that will have to live with the consequences and that leap into the darkness we all take has to be experienced, as you say this is not compatible will a lower order procedures. The key is are you delaying the inevitable and how much longer you can function in your condition, to that extent your condition will determine what the next reasonable option is for you and if after extensive evaluation this is the better option the decision has already been made, irrespective of what you think or feel.

    We all have those doubts about how any operation will be in the future and hope in hope that this one we be equal to the expectation we place upon it. Those wishing to help us feel powerless and rather than accepting any option on the basis that we all want improvement we need to proceed from known diagnosis to the next incremental step, we ourselves feel that pressure to see some improvement and words are not necessarily living with the results whatever the outcome.

    Some evidence here may suggest that most patients do enter this process having had previous invasive surgery and that in itself creates unique circumstance for how things will go in the future. One surgery is too many if the results do not bring satisfactory lifestyle. Many do have successful results based on the overall volume done; nobody should be in any haste to seek an irreversible process. What are your alternatives, we all have to live in the now and not look too far into the future, keep our expectations realistic, when it is our turn to make that decision, those who have already done so know how hard and difficult that was.

    We all look for confirmation that we are making the right decision and only you know when the time is right and what the other options are, once we decide we have to have confidence in the process and outcome in knowing that will the best knowledge and understanding at the time, we made the most beneficial decision.

    It is not them you have to convince, but yourself and we will all help in anyway we can with what you decide.

    Take care and good luck.


  • dilaurodilauro ConnecticutPosts: 11,347
    I hear this often and its mostly because the ones close to us really do not understand the details about the surgery. As you said they look at it as being as simple as having a tooth taken care of.

    You are right to do all the research you can, so that you completely understand the procedure, what to expect, recovery time, etc

    Remember, you are the only one that needs to make the decision about the surgery.

    I do hope things all work out
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • i can understand that the others don't understand the ramifications of such an invasive operation and all the implications and constrictions that it brings.i just wish that i could make my mind up .i can't bring myself to a decision because if it goes wrong i am seriously ducked! what will happen to me and my marriage i am 44 and at the moment i can still drive and wash myself and just get by on my own ..its not easy ..but its doable ..my fear is to be wheelchair dependent and even worse have a stroke and be incontinent ,,that would destroy me .i am a very very hygienic person even though i am a big lad 17 stone ..i am immaculately clean i take pride in my appearance .if things go wrong and i am unable to keep myself clean i would not be able to cope with that.i know that i have gone from yes to no and back again on having this operation and i don't even think that it will work ..i am having a real problem deciding what to do .in my mind even though the surgeon is one of the best i don't think that he can can improve on my condition ..why have 3 other surgeons told me to leave well alone ???
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