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am i expecting too much ?????

backache99backache99 Posts: 1,314
edited 06/11/2012 - 8:00 AM in Chronic Pain
hi all
as many of you know i had an ALIF 2 level done on the 29 dec .it was an awful operation and has left me with leg pain in both legs {did not have that before} also hip pain and unfortunately the dreaded lower backache has returned .i am only getting 2 hours sleep just like before then my legs light up on fire and i need to get up and walk around .so i end up back on the recliner watching re runs of two and a half men!its nearly 8 weeks now and i was told by the consultant that i was a gamble and recovery would be around2/3 years .so in the big scheme of things its very early .i just feel like crap and i am worried that things aren't as they should be .any ideas > {i see the consultant this tue 21/2/12
tony
1997 laminectomy
2007 repeat laminectomy and discectomy L4/L5
2011 ALIF {L4/L5/S1}
2012 ? bowel problems .still under investigation
2014 bladder operation may 19th 2014
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13

Comments

  • I'm sorry you're still having a rough time of it. I know it's still early days for you, but I know this doesn't help when you're still in so much pain (and having to deal with new pain symptoms that you didn't have before).

    I'm glad your appointment with your surgeon is only a couple of days away.

    If you're anything like me, it's so easy to forget everything you want to say when you first meet your surgeon post-op. Perhaps you can write a list that will help you to remember?

    Don't worry about taking up his time, don't worry about the queue of people waiting outside. It's the only chance you're gonna get to meet Mr S face-to-face and you need his reassurance that everything is still progressing well.

    I'm sure you'll have an x-ray On Tuesday as well which will hopefully show that all the hardware is doing it's job properly.

    Will you please let us all know how you get on ok?
    SUE
    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 !!
  • I dont think it will be hard to remember what to ask the dr,

    Anyone usualy who had previous surgery especialy more then once, All you can realy do is describe the pain thats not very hard to remember when you have it as dr comes in to talk to you,

    And if tony is still early out of surgery and all looks ok in the xray. They usualy say the line i hated to always hear the most, Give it time,

    New people i think mostly who never had surgery for sure need a list of questions and even keep notes in the dr,s office because many come out not understanding anything the dr had said and explained,

    Which i can understand for they not been dealing with any of these symptoms and medical words thats used that most of us already know after years of dealing with it,

    Good luck with your appointment,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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  • I am sorry you are still in so much pain and having new pain. My mom had a 3 level ALIF on November 15 and she is having the same problems. She also developed an abscess around her hardware a couple weeks post op.

    Whenever I go to my pain management doctor or neurosurgeon I make an outline of things that need to be talked about. I just put a bullet point with the subject, and then what needs to be talked about under the bullet point. The appointments are only so long and doing that really saves on time so the rest of your appointment can be used discussing things.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • Tony,

    It's normal to have high expectations, you went into surgery expecting to feel better. Indeed, you had a highly invasive one and its recovery may take more time than than you realized. Nothing objectionable in feeling bad for that.

    Profit from the appointment. I don't think making a list of topics to discuss is a bad idea, all the contrary. But I advise you to listen and make clear your position: though post-op recovery is not a stroll in the park you are in a great deal of pain and you are entitled to palliative measures. Don't be shy on making this point clear.

    Men think they must endure pain without complaining, moreover people don't want to "displease" their doctors by telling their treatment is not working. You are entitled to both things.

    And don't rush. Don't ask for more procedures just yet.


  • Tony, I know you don't want to hear this, but yes, it is too early to expect to be feeling much better. You have been through hell and are not quite due to be back yet. You got me thinking about the period after my surgery, and I can tell you the most I remember is pain, grogginess, sleeping (most often on the floor or the couch), trying to go for short walks, and coming home to lie down again. I would occasionally go to physical therapy and have them try to get the knots out of my muscles. Having several levels of your back stuck together really confuses your muscles and they keep trying to move normally until they run into the road block which is your fusion. As I've told you, it took 18 months, a year and a half before I even felt like I could walk normally. I'm so sorry for the state you're in. I know what it feels like, as I've been there. I was HEAVILY medicated after surgery. As I recall, I was still wearing fentanyl patches (three day duration) and taking oxycodone for the "break through" pain, which ALWAYS broke through. I know it is so hard to be patient with all this. You will, eventually, but very slowly, find your way back out of the hurt, but it is going to take a very long time. Do talk with your doc to see if there is anything you can do to loosen up your spasming muscles and get more rest. The other thing I remember about my post-surgery days is nearly constantly lying on an ice pack. I have two of flexible blue gel packs that they give in physio (I think they're made by Chattanooga) and I would lie on one while the other re-froze. Then I would switch them out.

    Hang in there buddy. I know it's awful. I really wish there was something we could do for you. After all those years of suffering, you get what is supposed to be a 'fix' for the problem and it is so very difficult to wait, and wait some more. I guess the best I can do is to tell you I understand and I so wish there was more help. Ice, ice, ice will be your best friend.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
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  • first i am not one to shy away from my feelings {unlike most men} i am also very well versed in medical terminology.and my wife is a medical professional .i think because i spend so much time on my own i can get a bit emotional with the lack of sleep and now the world that i knew is no longer i am having to relearn to do stuff and realise my new limitations ..i did not realise life would be like this .before the operation i had a boring voice screaming at me NOT to go through with the operation .and all of you that know me will also know that i have had a struggle over 12 months deciding weather or not to have the operation ..i think that the holiday 2 weeks before the operation kind of made the final decision .as i spent so much of the holiday in the hotel on the bed in pain unable to enjoy the winter sun that fuerteventura has to offer .i could not wait to come home .Christmas was a none event as i knew what was around the corner ..the dreaded ALIF .its take a lot from me and the first month i was unable to eat or sleep .i lived of custard and soup and cat naps and gallons of water .i could not even take a shower without nearly collapsing and then crying .{i have done more crying in the last 7 weeks than i have for a long time }...reactive depression ....i know what to ask the consultant and my wife will be with me .so i will keep you informed as and when i know anything .but is nice that you all care .
    tony x
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Thank you for the update. I think of you often and am wondering how you are getting on.

    I know that I HAVE to write a list of things I want to ask my Doctor's when I see them. I believe it's a good idea for everyone.(sorry Alex) If we all had perfect recall it would not be as important but we do not.

    I am som sorry you are still in so much pain. I do hope it starts easing up soon.

    Patsy W
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,746
    So Tony as I see it we are in the same boat. Or close to it. I got my surgery Nov. 29. So I'm a month ahead of you on recovery. We were both in terrible physical shape. And were not spring chickens no more either. Both had very invasive, long surgeries. And I could go on and on.
    But as I read your thread I,m seeing that yours was a no brain-er too. You didn't have a life. You couldn't enjoy your holidays.
    So what did you have to lose?...Nothing ventured, nothing gained! And the worst I can see is you breaking even. And having the miserable life that you already had. It was a calculated risk that you and I were told would be a very long recovery. 1-2 yrs. I didn't notice ANY headway at all until this week. And in the grand scheme of things.It wasn't very much at all. But it was something! and I'm 1 mo. ahead of you. Other that a couple of good days. The recovery is so slow that it's hard to notice it at all. Pay real close attention and in this next month I'm sure you'll notice some kind of improvement. No matter how minuscule it is! Good luck on your appointment my Brother across the ocean!
    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!
  • Tony,

    Just wanted to say I admire the decision. As Jim said you really didn't have an option near the end. It was a risk you had to take. The first few months weren't pretty for me, but I started seeing small improvements. I was beyond thrilled when I could put on my own socks without the sock thingy (don't know what its called, but its a bar that helps you pull up your socks). Hopefully you'll get a moment like that soon. Pay attention to the things you do, maybe you'll notice something is a little easier today then it was yesterday. I believe you will improve, slowly yes, but improve all the same.
  • I have NEVER before felt it necessary to respond to someone else's comment, but I'm left feeling that I have no choice but to defend myself here. I'm just sorry, Tony, that I'm having to do it on your thread.

    I know I can be rather over-sensitive at the moment but the comments 'alexhurting' has made have given me the impression that there are sarcastic undertones, and so I wish to reply.

    It is very possible, of course, that I have totally got the wrong end of the stick and have misunderstood his remarks and, if this is the case, then I sincerely apologise.

    --------------------

    Alexhurting said, and I quote:

    "I dont think it will be hard to remember what to ask the dr"

    "Anyone usualy who had previous surgery especialy more then once, All you can realy do is describe the pain thats not very hard to remember when you have it as dr comes in to talk to you"

    "New people i think mostly who never had surgery for sure need a list of questions and even keep notes in the dr,s office because many come out not understanding anything the dr had said and explained"

    --------------------

    In my defense, I am well aware that I am not perfect and I know my memory is not what it used to be - but I truly believe that being on strong medication for many years, and also now receiving medication for depression, has all impaired my ability to concentrate and retain information. This has only occurred over the last couple of years - actually, since I have experienced numerous problems trying to do my job and not receiving support from my employers - but that's another story!

    It may also be that because I have not been able to work for many months now, perhaps I am out of practice and have not 'needed' to use the same level of brain cells as I used to. Who knows.

    I have only ever tried to respond to other people's posts from my own experience and to show support and understanding as best as I can - hence the reason why I said to Tony "If you are anything like me it's so easy to forget everything......", because I know my own weaknesses and limitations.

    Unfortunately, I have learned from past experience, that I have left a consultation realising that I have not asked the very questions that were important to me. That is why I will always write points down beforehand now. It may be that I do not need to refer to them, which is great. I only write bullet points down as a back-up nowadays, and it works well for me. Obviously, we are all different (thank G-d) and what works for me might not work for someone else, which is fair enough. I certainly would not give the impression of undermining another person because they did things differently to me.

    And yes, it is also true that when I come out, I do not always fully recall what has been said. If I'm only in the consultation for 10-15 minutes, there can be so much information sharing. I am not expected to remember it all, but no doubt, other people can, and that's great for them! But what works for me is writing key words down so I can recount far more of the conversation, more accurately, when I discuss it with my husband when I return. It's a shame that my husband cannot accompany me on these appointments due to his work commitments. If he did, he would be able to give a far more accurate account of what transpired because his mental abilities are far greater than mine.

    Whether I have had numerous operations or none is not relevant. Some people like to fully research their conditions and others don't. The difficulty I have found is that there is alot of conflicting information and advice, whether it's about a particular surgical procedure or someone's recovery from it, that sometimes it is difficult to know exactly what to do for the best and what is the right decision to make (for me personally that is). It works for me to write things down so I can discuss any worries/concerns with my surgeon to get more information and a better understanding of what's involved from HIS surgical experience.

    I would also like to say that if I had negative thoughts about someone's comments on Spine Health, then I would not put them down in words because, personally, I would never want to offend or upset anyone. I have made the one exception in this case - and that's why I can only assume I have misunderstood what 'alexhurting' was trying to say.

    Maybe I'm not handling the depression as well as I thought I was. Perhaps I am taking his comments too personally and too much to heart. If so, then I'm sorry. If I had read the comments tomorrow, I might have felt very differently about them. I don't know. But today has not been a good one pain-wise and so I do appreciate, I'm probably more over-sensitive than usual.

    SUE
    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 !!
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