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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...
  • 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!

  • 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: 10,045
    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 Spine-Health System Administrator
    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 ???
  • I think all of your thought processes are completely healthy. I can't answer any of them for you. Maybe this one can do the surgery and the others couldn't. Or maybe not.

    You know, I think you should ask him in your next appt- is there anything you can do during the surgery to reduce the chances of making things worse? I understand there is always that risk, but what can be done do reduce it? Understanding that I'm already in such a bad state that any worsening of my condition means I can't care for myself, that's the last thing standing between me and this surgery.
  • You need to try and find a way to take a break. You are driving yourself absolutely bonkers. Things would be clearer if your appointment wasn't rescheduled. I wish I had an answer for you, but I don't.

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    I noticed you mentioned stroke as one bad possibility. Do you show a lot of Plaque in your spinal MRI? I ask because that is why I was not a candidate for a traditional fusion surgery this last go around. They said if they knocked off a piece of the plaque on my spine, I would possibly have a stroke. But with this new surgery technique. Knocking plaque off and causing a stroke, was not an issue. Because of the different approach to doing it,... laterally. XLIF fusion dosen't have that drawback. And it was much less trauma than the other traditional spinal fusion surgeries that I've had. and much less recovery time. And this one was the only one that was successful. I don't know if you've been given a choice on this type of surgery. But it might be worth looking into.
    But ultimately, the decision will be yours and not anyone else's no mater how well their intentions are.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • the fear of being incapacitated more than i am now and not being able to keep myself to my normal high level of cleanliness {personal hygiene is very important to me } scares the grit out of me .to be like my brother in law {who now need 24 hour care and has a man to wash him and take him to the toilet ..well i am sorry but that's not me .i would rather be dead ...i had a very bad start in life and when i was 14 i was living on the street due to my so called mum and dad living there own lives .i was forced to fend for myself and now i have a nice home and all the modern conveniences i have this fear of loosing them either by divorce {as had happened once already or illness} .i am not as fit as i would like to be i smoke and i am 17 stone so i run the risk of heart problems .i will stop smoking before the operation .i know i should quit now but i like it too much .please no lecture about smoking i am aware about the risks..
  • My dad once told me and it's so true. "No one knows until they walk in your shoes". I am 49 and after reading your posts we have some things in common, we both spend much of our days in our recliners. I believe your problems are much more serious than mine. Some of my family members have said very hurtful things that I guess I took the wrong way but saying I sit in my recliner and do nothing to help myself seemed mean not helpful at all. No one has a clue to the amount of tests and therapy's we have been through. I had a failed cervical surgery which left me with a paralysed vocal cord (can hardly speak at all but am trying speech therapy). I have a disabled husband with a heart condition and it scares me to death to have anymore surgeries. What if I am worse off than I am now. I only go out for dr appts as I can barely walk and the wheelchair is very difficult for my husband to manage. Of course in no way do I want to give you advise one way or the other, I just want you to know I totally understand what you are feeling. Seems like my family thinks everything I try is going to cure me and I know they just care but when things don't work then I feel like a failure. I also think you are great doing the research you have done. You have helped many of us and you are very knowledgeable when it comes to spine issues. That is a good thing Tony. Maybe not for everyone but you are very smart and well versed. It is your decision to make and only yours. It's your body and you have the right to be scared of what the future holds especially since you have been dealing with this for so long. I
    will pray for you and whever you decide remember it is your body and no one has walked in your shoes!
    Good luck and keep us posted, always willing to listen.
  • you sound as bad as me or even worse .its good to know that i have so much support ,but as you and many others have said when the day comes its me and the theater team and the luck of the gods if i sign the consent form ! .i do try my hardest to keep occupied and try to do at least one thing a day .like today i washed my car and tonight i have a wedding do from 7 until 12 ..now that is going to be a hard thing for me to do but i am going to do it because my wife is already there and my step sons girlfriend are depending on me to take them and i want some quality time with my wife .tomorrow i wont be able to do anything as i will be in agony! i still don't think that an operation would allow me to do any more than i can do now and i still recon that i will need as many painkillers as i do now ..then i have a really bad day and i mean BAD and i would go straight to theatre there and then! ..i just don't know what to do i have already expressed my fears anyway on the 2 July when i see the man we shall see ..thank again to everyone that has stuck by me i love you all
    tony xx
  • There is something you brought up here and we fail to think in those logical terms...

    1) What is the best outcome from the surgery? Most likely outcome? worst outcome?

    2) Even in a successful surgery scenario, how long will it be before you can do more than you can do now? or will it be the same just with less pain?

    What has the doctor said about these type of questions?

  • thinks that because he knows me very well {30 years} and he knows my wife {as she works with him} and he knows my quality of life ...he thinks that yes its a big decisions but the way i am going on at the moment ..what have i got to loose ..his logic is if you are going to die on the table then you will ,but if the operation is going to work out for me ..again then it will ...he is a man of fate!!! .he reckons that my life can't get much worse from a medical point of view ..the surgeon has yet to give me a firm opinion {2 july} i myself as you know ..am very unsure ???????
  • but I certainly know where you're coming from Tony.

    My situation is not quite as restricting as yours, but the pain is real nonetheless. I've said many times that I only 'live to work', unfortunately my social life is non-existent and I cannot do what I want to do because of back/leg pain.

    It's so difficult to make a decision like this by yourself - you can't! You need the support and reassurance from your surgeon. In a way, it might be a blessing that your appointment has been put back a couple of weeks. This gives you more time to get all your questions written down for when you see the specialist on 2 July. I am sure you're not going to ask anything that he hasn't heard before. Perhaps you can email your questions to him before your appointment, so that he's got a bit more time to consider them before you meet? Maybe have a word with his secretary to see if this is possible?

    I'm trying to think of what I would do. In fact, I have spoken to my surgeon's secretary a few times and she's been really helpful (after my last appointment with a different 'registrar' didn't go well at all, even though they could have done surgery on 22 June). I'm now going for 'validation' on 01 July and am scheduled for 2-level PLIF on 14 July with the original surgeon that I have immense trust in (we have spoken about it if you remember?). It's a long drawn out story, but I have been so grateful for the delay. And if my date is postponed for whatever reason, I'm mentally prepared for that as well - I'm in no hurry!!

    I can so empathise with you about changing your mind all the time, and I think that's only natural. If I'm honest, I would say that reading stuff on the Internet can sometimes be so frightening. Yes, it's good to be fully informed - to know the pro's and con's of any surgery, but my experience has so far been that anything I read about PLIF surgery has been, on the whole, negative. There are a few posts from people who have had successful outcomes and are doing things they didn't think they'd ever do again - which is so encouraging, but there are also posts from people who have been left worse off, and it scares the life out of me. This leaves me with big doubts as to what I should do for the best, so you're definitely not alone there!

    Tony - I can't help with the answers. But for me personally I can only say that I have chosen to have surgery because:

    1- my condition has deteriorated over the last 5 years and I have been told it will get worse as I get older
    2- I had two discectomies 5 years ago (unsuccessful)
    3- I have tried all conservative treatments available (e.g. facet injections - I've had 7 now)
    4- Physiotherapy (I've had 10 courses since 2005)
    5- if I need to have surgery in the long term, I'd rather have it now when hopefully I am still young enough (53) to get over it physically (and my surgeon says I am a good candidate now for this procedure)
    6- I want my life back!! - to be able to choose to do things that I enjoy, rather than decline all the time because it may exacerbate my back condition and leave me unable to work
    7- I'd like to get rid of (or at least reduce) the amount of medication I take that leaves me tired all the time, unable to concentrate and I believe produces side-effects that I am now having other tests for
    8- I have hit the 'trigger points' at work for absence due to sickness (all back related) and have now gone through stage 1 (I cannot afford not to work)
    9- the NHS could, in months/years to come, reduce the funding for this type of surgery because they have to save money!
    10- my daughter's visa for the USA was approved yesterday, so she's going to be moving there in July! I want to be able to fly long-haul to see her at some point in the future!
    11- I've done everything I can possibly do to try and help myself (exercise, improve my core strength, I've lost 5 and a half stones, I'm on my LAST packet of cigarettes!!!!!)
    12- I have attended two spinal support groups (with another one on 3 July) where I can chat to lots of people who have had surgery or who are considering it for various reasons - this has helped me alot
    13- there's probably alot more on this list, but I can't recall them all at the moment, BUT, I DO HAVE FAITH IN MY SURGEON!

    Tony - perhaps also write a list of everything you've tried so far. Did anything work (I guess not)? Is there anything you can do yourself that might give you more time before going down the surgery route?

    It's a really tough decision to make - I've only given you my information to explain how I came to the decision to have surgery - but that doesn't mean I'm not frightened to death about it, I am. But, all things considered, I feel I'm making the right decision for me, now. After surgery, I may feel very differently of course, but I have to take that chance. My surgeon is very reassuring, he's had 14 years experience of doing PLIF's and seems to have a very good reputation (I've spent hours and hours researching everything about PLIF's) - he's explained all the pro's and con's to me, so I feel that I am making an informed decision.

    You seem to have the same faith in your own surgeon, who you know is highly experienced and well regarded worldwide - so tell him all your fears/concerns. See what he says on 2 July - write down his answers so you don't forget them! When you've had a few days to think it all through and discuss it with your family (and/or here on the forum, whatever you wish), then you may come to a decision either way that you are more content with. Don't beat yourself up now, you'll drive yourself round the bend!

    As someone else said, you have helped so many others on this forum - I hope we can give you the same support. Please let us all know how you get on OK?

    You take care and G-d bless xx
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    Just want you to know, you and I have lived and do live similar lives. If I couldn't keep up my hygiene and hold on to what I've worked hard for. I just couldn't take it. IT IS A VERY BIG DECISSION! I just hope it all works out for you.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I hope you have a good time tonight at the wedding party.
    It must be a hard decision to make for you to get this surgery and especially with having failed surgery in your past and you dear brother-in-law what has happened to him. Really only seeing him again and you'll know more after you see the Surgeon July 2nd and he could let you know more about the surgery and the past experience he's had with other patients but it's hard to say what the outcome is especially your spine is different also from others. It must be difficult to make the decision and hopefully your family just wants to see you have less pain and be happy.

    One good thing he is the best Surgeon around though right, which would probably make you more confident in him though. Perhaps even more you still need the discogram to see where the pain generating disc(s) is so that may help you decide really if it's necessary for you to have surgery sooner rather than later on. See what the Surgeon would say and if there'll be any consequences waiting a few years or and if that would make a difference to your nerve condition.

    We're here for you Tony and hope you're feeling better tomorrow but have a great time tonight and dance a little with the wife. You deserve to get out there and have an enjoyable time. Wishing you the best. TC. Charry :-C Keep us posted how you're doing.

    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • These are all valid questions that you can only answer for yourself.

    It's nice to talk through them, though. What about your wife, what does she say about this?
  • I know that feeling, I did the same thing last week trying to drive my daughter 2 hours for something she wanted to do. "Oops, poor choice."

    Feel better, get some rest.
  • i have just come back from the wedding do and i can honestly say i did the wrong thing .i tried to enjoy myself i manage to squeeze myself into normal clothing and boots ..i was so uncomfortable as i had to stand for 3 hours .even the 40 minute drive back was a killer {going was not too bad } but i am now back on my recliner in my shorts and have just had some oxycontin so the pain is easing .i wont be doing that kind of thing again ..its torture for me .i am so glad to be home . sue thanks for your post i will answer it tomorrow when i am feeling better .and thanks to every one else for there input .but i am too tired and in awful pain to answer question and comment on what you have all said .so thanks again and i will read and post tomorrow
  • thanks for your comprehensive post .and as you know most of what you have listed is the same for me too.the 2 failed operations/the countless amounts of physio and other procedures and and and!! so yes i understand i too want my quality of life back .i am 9 years younger than you but even i feel that its a risky operation because by the time i am 54 say ..i will probably need MORE surgery! ..as things stand it looks like i am leaning towards going for it .last night at the wedding i was propped up against a chair as i can't sit down and i got so fed up with people asking me to sit down then explaining why i could not do that .then even family members {insensitive 845t4rd5 } started going on about my weight !! just what i needed ..i had tried my hardest to go to this wedding and trust me it was a real effort .it was very noisy and i must admit i was a bit envious of all the young and not so young people all dress to kill {especially the women ..WOW} i have forgotten just how well a nice shaped young lady looks ! as i spend so much time at home .it took me 20 mg of valium just to get me out of the house as i was nervous about leaving my comfort zone and being in a crowd.then i had to drive 5 people back home in the dark across bendy lanes .all in all it was the wrong thing to do .i am ashamed of the way i now look ..i feel so fat and even nice cloths make me look like blob .i had such a good shape {swimmers body } not that long ago .that bloody last operation has done me a lot of damage as i have not been able to do abdominal exercises because i can't bend now ..i still swim when i can but that is not giving me a nice body shape...then i met my lovely brother in law {the one that had the smash and now requires 24 hour care ..its a reminder of how a brain injury dramatically effects a person .its taken his life away .and i feel sad for him and his wife {wonderful woman} as she is now his nurse {he also has a 12 hour live in career} .when i got home i cried as i was in so much pain just from standing up for a few hours {there was oldies in the 80s bopping around on the dance floor.... and then there was me ! feeling like i should not have been there ..talk about that spoon thingy ..i ran out of spoons at about 4am !! ..anyway sue well done with the fags and amazing weight loss how did you do it ????please tell me ..good luck on the 14th please PM your address as i want to send you a card
    tony x {PS a big than you to everyone that helps and supports me it means SO SO much }
  • Good Morning Tony...
    Oh, how I can relate! I realize that no one but ourselves can feel our pain but I long for compassion from my family...but no way will I ever get it. The only concern they have is my drug use. That is all I ever hear...on and on. "Are you taking another pain pill????" I want to just go off on them sometimes but I know I can't. I realize their concern may be legitimate but then again I could use some empathy more than criticism. I think they thought my 3rd surgery would end all problems (I was secretly hoping so myself!) so when it didn't it's like now they think I am just a junkie and doing all the things I do now just to get drugs. That is their total focus. It doesn't matter to them that I can't put my own shoes on, drive my car, socialize outside of home, no longer even able to go to the store...can't stand to ride in the car...so painful. Of course, like others I could go on and on about all the things that I no longer can do...but, they do not see that. All I see is disgust in their eyes and it saddens me so much. The only support (I shouldn't say only..as it's the most important)I get is from my husband and even he is always going on about how I am going to have to get hold of myself and start moving and exercising, ect. ect. Sorry...didn't mean to write a book...I just wanted you to know that I understand your need for some basic family support! I am praying that whichever decision you make it will be the right one!
  • Tony going to that wedding was soo important for you. When we sit home, cut off from others, it is easy to have a pity party. When we see others we realize that there are many better and some so much worse.

    For me my greatest fear is losing my sight. That would be the worst. After that would be brain injury, but I guess I wouldn't know about that. The rest can be handled.

    I am angry that all this is happening to me. I am missing so many things that I want to do. And if I focus on that I would spend everyday crying. So instead I find things that I can do and make them my new reality. And I never give up on getting better. I would try anything that would make me as good as I can be.

    Only you can make the decision on surgery. Your doctors have given you their opinions. Your family and friends have shared their opinions (prob more than you wanted). Now it is up to you. And I know you will make the right decision for YOU. As you go through this remember the circle. We are here for you no matter what.
  • I did not have the two surgeries but only a year and a half ago I felt like a million dollars...maybe 2 million.


    You could see my profile here where I deadlifted 300 lbs and was able to cycle everyday and did tours from NYC to Boston and Baltimore. One fall and all is lost.

    I still have the bike, the cloths and today I went to the gym and walked for an hour. It was not easy or pleasant at all. It is just pitiful honestly and on this father's day I can feel like such a loser.

    But honestly I remember an email I sent to John here. He sent me a very nice email about how I am adjusting. I thought about it and said yes I am re-born. The old JS is dead and we now have JS v2.0 and I am now just trying to work out the bugs.

    My advice is stop trying to do what people expect of you! Do what is best for you and if not going to a wedding is that than do not go. You owe no one any explanation. You know your responsibilities and you just need to focus on you.

    Whatever your decision concerning the surgery Tony is fine but my advice to you is to give up on the old straker. When I go into my PT office I see this thing on the wall about allowing for people to live their life as they want. I laugh everytime I see it.

    Our key is to focus on less pain and getting the bugs out of this new body!

    Good luck Tony...

    -js v2.0
  • Eh, I just chalk it all up to getting old. I don't weigh THAT much more than I did in my 20s, but damn is it all in different spots or what?

  • Tony, I know you are concerned about your weight, and I can totally understand as most of my days are as yours in the recliner. Its a vicious circle, the meds we take put on weight. I just wondered as I don't know what a "stone" is equivalent to in lbs. is your weight a safety issue when it comes to this surgery? I'm not asking this to make you feel bad in any way so please don't be offended. I just know these surgeries can take a very long time. I too, smoke which I know they say is the worst thing we spiney's can do. They want you to stop before the surgery and that in itself makes us nervous wrecks. I wish they could give us some guarantees but of course they can't. However, my neurosurgeon did assure me not to worry about any type of vocal cord problem as he did hundreds of these surgeries and never a problem. Well mine is paralysed. I am working with a speech therapist and not much improvement. I am looking for I think what you are an improvement to my quality of life. Since I don't sleep much I real alot and I wonder if any of you have heard the same thing "once you have a back issue or spinal no matte where, you have it forever". I get down alot as I am only 49 and feel like I let everyone down as I cannot attend functions. They all make me feel as though I am not trying hard enough. Everyone knows what will "fix me" it seems like. My aunt said she is going to forceably take me to her chiropractor! She is sure he will cure me. My dr's have said no way. Seems like when I need support I just get remarks that make me feel bad. This in turn makes me not really even want to be around people except of course my husband who is wonderful. But I even feel for him, I wish I could go and do the things couples are supposed to do. Well I am rambling and not helping you I am sure. Tony, you have to be comfortable with your decision as it is only yours to make. It sounds like you have doubts but yet you would try almost anything to get some of your old self back. When you told us the story of your brother in law it really made me stop and think. There is always someone worse off than we are and it is so sad. I am sure it is scary for you as you see it and are close to the situation. I pray that God gives you the strength and the courage to make a decision that suits your needs. No one elses! You are a very courageous and kind man and quite intelligent also, so I know whatever you decide will be right for you. Don't put to much pressure or stress on yourself as you have enough going on. Always here for you no matter if you want to scream, yell, cry or laugh. I will be thinking of you and keep us updated anytime you feel up to it.
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