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Worse After Reading!

Lauriec620LLauriec620 Posts: 4
edited 06/11/2012 - 8:45 AM in New Member Introductions
I've read through a lot of these posts and now I wish I hadn't. I'm scheduled for Transforaminal Interbody Fusion at L3-4 and Laminectomy on July 9. Maybe I've been in la la land, but I had no idea the aftermath would be as bad as everybody says it is. I have a progressive arthritis, had both my knees replaced in 2008, and have had spine issues for years. Epidurals were great for the last five years but no longer work.I'm not in much pain as long as I'm sitting, but I can't be on my feet very long. So the choice for surgery is meant to get my life back.

The knee replacement surgeries were not fun, but I was pretty much OK after 6 weeks. I thought this would work the same way. But I'm reading that people are still miserable MONTHS later, and have new pain post surgery. Now I think I may have made a huge mistake in going this route.


  • Laurie please don't be discouraged by what you are reading. Many people find spinehealth for information on their condition or they are needing support for what they have going on. Many others have procedures and or surgeries and move on because they do not need it anymore. We do have a few fine people that stay on to help answer questions and provide information and support that we need(btw they're pretty cool people :smile:" alt=":smile:" height="20" /> ). I hope your surgery goes well and your one of the ones that get to move on. Again please don't be discouraged there are many happy stories.
  • Laurie, first off a Hearty Welcome to Spine Health! On the top of the web page is a 'search box'...using it might also help answer questions for you.

    Please don't be discouraged by what you have read on here. This site like other health issue related sites is simple. Many times when a person has *good* results, they no longer need support and move on with their lives - I applaud them personally! This is a wonderful site, and odd as this sounds, hopefully you won't have to be here long, cuz YOU too will be one that will have great success! :)

    Again, welcome aboard! There are many here that can help with your questions and concerns - as many have 'been there, done that, have the shirt!' Take care, and please keep us posted!! *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Firstly, I'd like to welcome you to Spine Health. I think you will be glad that you found us, and hope that you will get a lot of help, knowledge and encouragement from this site.

    I know that some of the stories on here, do sound alarming, and can give the impression that most people still have terrible pain after fusion surgery.
    As Rwill and Brenda say, the people who have had successful surgery, soon move on, and get back to their life.

    I found that knowing some of the worst stories, did help to prepare me mentally for a very tough ride. The reality wasn't nearly as bad as I'd feared, and I was surprised at how well I coped with it.

    I did have various complications along the way, needing a transfusion, incision infection and problems with closure being some of them. Each problem along the way, was dealt with, and now 14 weeks after my surgery, I am doing very well and am so much better than before surgery. I would say that I felt better than before surgery, quite quickly.

    I think that even the people who still have pain and problems after surgery, most would say that they are glad they went ahead with it.
    If you don't have surgery, you will probably stay the same (if you are lucky!) or get worse.

    I also waited for a long time trying to avoid surgery. I wondered if I was bad enough to have it, as I read of people who seemed to be in far worse pain than me.
    I wasn't using pain meds on a daily basis, only on occasions when I was particularly bad. When I had pain, I would either sit down or sometimes needed to lie down.

    The trouble is, that my back was limiting my life and things were getting worse. Then a surgeon told me that if I didn't have surgery, the severe stenosis, would get worse and I would eventually need to be in a wheelchair (and eventually incontinent). That was when I knew I had to face the surgery. I am so glad I did. :D

    If in the same situation again, I would still try to avoid surgery, but would have not waited so long. It has greatly improved how I feel, and I can see a much better life getting closer each week. :-)

    You do need to be ready mentally for a long recovery period, but it is only the initial period that is really difficult. I think that we find it easy to overdo it after those first weeks, then we have a flare up in pain. It is a reminder to follow the rules and give ourselves time to get strong again. Plan ahead for the things that you want to do, once you are more mobile, to pass the time. Reading, DVDs, music, arts and crafts etc.
    I have written a short story for my 3 year old granddaughter, and am now working on the illustrations.

    Do keep talking to us, and ask any questions you may have, someone is very likely to have experienced what you are asking, and will be able to share with you.

    We are a friendly bunch, and will be glad to help and support you through this.
    You will probably make some very good friends, I know I have :-)

  • Laurie,
    We are a community we are only representative of some less fortunate where it has not worked and not reflective of the vast majority of procedures done overall, many here where surgery has proved effective are able to move on and the need for close support, encouragement and necessary feedback less desirable.

    Although my own process did not work for me, it should not be used as a measure of the majority, we have to be selective in what and how we digest information and testimony here, for the most part it is to encourage and give a balanced view of others experience good and bad. If we read similar messages we can soon believe that we too are going to succumb to the same fate as others, many post here to be supportive and informative it is not a hierarchy of angst, just because my own procedure did not work is only my story and not reflective of your unique underlying condition and recommendation.

    I have seen those knee patients recover and you have done well in getting though, as you said it did not look easy and you are more prepared for what is about to happen, do not let others circumstances put you off, I presume you have a clear diagnosis and this is the most preferable option. It is only natural to be tentative and we all questioned was it the right things that we were doing, it defines realistic expectations, we all need to be selective in what we read and determine how relevant this evidence is to our individual circumstance.

    Take care and good luck.

  • Welcome to Spine-Health. You can read up on your upcoming fusion with some articles and videos on the site and of course, the forum members are always very helpful, knowledgeable and supportive.

    I've had both a 3-lvl ACDF and a 1-lvl TLIF (which is what you're having). I consider my TLIF a success, but I'm still in pain even after PT. The thing to remember with any spine surgery, especially lumbar, is that it comes with a long recovery period. Generally, it's stated that at 6 months you begin to feel better (I'm almost at 6 months and am feeling better), and that 1 year you'll be back to normal.

    It doesn't always work that way, but with a good surgeon, an unremarkable surgery, maintaining restrictions after surgery, and proper post-op pain management, you can definitely come out on top after your surgery recovery.

    Like it has been said, we've had many, many members come for help before their surgeries, need support during their recoveries then they feel better, get back to their life and no longer need the support and advice given here. They simply go on living like they did before surgery. So don't let what you read here cloud your opinion about fusion surgery - there are many successes out there, more than you might realize.

    Some of us stay to help people like you and because we have made friends. I've also heard and know from experience that the anticipation is often worse than the surgery, it really was for me both times. However, to be perfectly honest, lumbar recovery is a long one, but once you get through it you can live a normal life. The first few weeks after surgery are the toughest, but then it gets easier as the weeks and months go by. You'll want to measure your improvement by weeks after this surgery, not days.

    As an example, even though I still have pain at 6 months out (not anything like before, it has steadily gotten better), I'm playing golf again. I've had to adjust my swing to accommodate my lumbar surgery and the plate in my neck, but I'm on the golf course and keeping pace.

    So please know that you can get back to a normal life after a TLIF, many have and if things go well, you'll back at 'em after recovery.

    Take a look at the Post-op Must Haves at the top of the Surgery section. In the time leading up to surgery, you can pass the time by preparing for your recovery, getting things like a walker, a toilet riser, a grabber, and satin sheets or a satin nightgown for getting out of bed easier. If you're not sure what you might need aside from what I've already mentioned, don't hesitate to post what others have found important to have during their recovery. Also, having someone staying with you for a couple of weeks is a great thing to have to take care of you.

    Take care and don't hesitate to continue to ask for support here in the days leading up to your surgery. That's what we're here for.

  • Hi Laurie,

    I won't repear what everyone has already said about how all the success stories move on...even though it is true.

    I too had TLIF. Text book perfect. I'd do it again. Did I recover is 6 weeks? No! Cath's timeline is a bit more realistic in MY OPINION. I did have some trapped nerves and they took considerably longer to heal but that was me.

    It's your new back I would want to make sure you are aware of. Einstein's theory of Insanity comes to mind for me here. You just can't keep doing the same things you've always done and expect different results. That's where I went wrong.

    After my fusion and recovery I went back to my life and continued doing the same things I had always done. Don’t get me wrong. I did everything they told me to do to heal. I swam 3-4 times a week walked often every single day and did all those crazy exercises they taught me in PT. At my one year appointment my surgeon said you can do what you want to do. I asked if I could golf. He laughed and said, “sure mark my words, I didn’t say you would be good at it.” He was right. I really suck. (It's the surgery's fault. That's my story and I'm sticking to it.)

    A year after my fusion I was right back at life. I just thought once I was fused I was good to go. Pounding the concrete floors for 12 hours a day, heaving cases of water, rearranging my furniture, digging in the gardens you get the picture. I’m sure I wasn’t lifting correctly, and when my back would be killing me I did what I always used to do, ignored it and worked through the pain. What I didn’t know was when you fuse a level in your back, especially L4-L5 the levels above and below take that much more stress.

    My Fusion at L4-L5 is TEXT BOOK PERFECT and I’ve had 3 surgeons say so. When that level could no longer move the level above and below took on all the WORK AND STRESS. I DON'T RECOMMEND YOU DO THIS TO YOUR NEW BACK.

    You didn’t ask but I’m going to offer you these three pieces of advice.

    #1)Keep your CORE VERY STRONG and do your stretches. Those core strengthening exercises THEY WILL TEACH YOU IN PT? Do them, learn them until you CAN do them in your sleep. Then do them daily forever!
    #2)Lift with your legs only, forever! All those nifty little tricks you are supposed to learn on how to lift. Do not ignore them. Lift correctly. Don’t try to be the hero. Team lift things.
    #3)Listen to the signals your body is sending you. If you feel the twinges follow them and stop. Pain is our bodies warning system. “Ouch something is wrong.”

    Just my own .02 cents based on my own personal experience.
    Good Luck Laurie,

    Keep us posted!
  • You guys are all amazing! I feel so much better after reading your responses! I've found so many similarities to my own journey in what you've said. I've thought I should be writhing in agony instead of experiencing pain only when I'm on my feet. I've thought I should need major painkillers instead of just Celebrex. Maybe I was just being a big baby with this and wanting the surgery to make it all better. And so I've really had my doubts. But there's always been this little voice telling me that I should just do this before it gets worse or before I get too old. Thankfully, your responses have validated that I'm doing the right thing.

    I think I can be prepared for the long road ahead if I know there's light at the end of the tunnel. In some ways I'm actually looking forward to having a few months away from my office and its stresses and just concentrating on myself. DVDs, reading, needlework and the time to do them all sound like heaven. And of course I'm looking forward to being able to walk the mall!

    I live in central Arizona, so the heat here at this time of year is just unbelievable - triple digits every day. Walking daily will have to be at night and swimming is about the only thing one can do outside. But my game plan is to be back on my feet and raring to go when the weather is perfect and the holidays are around the corner. So from the sound of what you all say, that just might happen!

    Thanks again for the wonderful words and I will absolutely keep everyone posted.
  • Glad to see you back, even gladder to see that you are in better spirits! On here we are all spine patients of one kind or another. We support each other, hug each other, bring each other back to the real world when ours seem out of control! That is one of the great things about this site. On here, unlike our friends and family who dearly love and care for us, they don't really "understand" the spiney land!

    So again, Welcome to the family!!! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • WHY has my surgeon told me that it will take THREE years to recover ..not 3 months or even 1 year but THREE ??? and even then i have been told that my back may still be in pain and even in more pain than it is now ???.have i got a particular back spine or a bad surgeon ??? i see him this Friday to take about my operation {i still can't decide weather to have it or not }
  • Good Question Straker. I've wondered that myself after reading some of your post.

    I will admit I'm not really totally up to date with your entire situation but 3 years seems a bit long. I would expect, at worse, a complete year. Then some aches and pains for all your trouble after that, a bit more reasonable. (Especially during inclement weather.) I'm not sure why he paints such a gloomy picture.

    My doctor and I recently had a conversation about surgeons as I have had 3 different consults in the last few weeks about adding 2 more levels to my fusion.

    He told me, surgeons know these are elective surgery. (Yeah, I know, right, like sometimes we feel like we have any other choice.) Anyway, some surgeons will spew out just the facts, give you the gloom and doom and even tone way down their bedside manner to the point where you don't like them. They DON'T WANT you to choose for THEM they want you to choose the procedure. It can also be their way of seeing if you are really that desperate. Now, do I think that is the case with yours? No telling! Just thought I would mention it.

    It's certainly a question I would ask him in exaclty the way you did here when you see him Friday.

    Good Luck in your decision making and on Friday. We all anxiously await. I for one am sending positive thoughts and prayer way across the pond...
  • frog
    i sought this man out from another website he is one of the very few surgeons that can do this kind of operation {on a spine as bad as mine} 3 other have refused } he is an excellent surgeon and people come from all over the planet to see him and he goes all over to help people .we got on well on the first consultation but he is known for being direct and not having a brilliant bedside manor .{the other surgeon that did my last operation was the nicest person i have ever met he even phoned me at home to arrange my surgery for the weekend {over here that's not the norm } he told me that he had managed to get a team together and could i come in ?? that was 48 hours before ...so i came in and was operated on ..but after the operation he came to see me and told me that the operation has been much harder than he thought as there was much more damage that could be seen on MRI ..2 months later i was in the A'E department {ER} and i was in agony but once again i was told there is nothing we can do .then 4 moths later in clinic he told me that we had a bad event in surgery {he would not say ????} and he would NOT be operation on me again .my consultant anaesthetist /pain consultant also refuses to treat me due to the fact that the last time she tried to give me an epidural she nearly broke the long needle as my spine is full of hard tissue .and to end 2 other surgeons have refused to operate ,,i did not know what to do so i went looking and found this guy that said that ADR was out of the question due to the state of my back but a multi level fusion could be done ..my question is ..what is so bad that so many medical people want to run away from my back and has my new surgeon realise what the others have but thinks he can sort me out or is he missing something ???
  • What diagnosis have they given you?
    How many levels are they talking about fusing?

    I know that sometimes surgeons do give bad odds for surgery, if they don't think that it will help you. They don't want to make people worse than they are, so if they think it is not likely to help, they give bad odds.

    I had a friend who was given 50/50 odds of being paralysed after fusion surgery!! That made me think he couldn't be a very good surgeon, as most would give better odds than that! I was talking to my doctor about it, and she smiled and said that it sounded like he didn't want to do the surgery. This friend ended up having surgery with a different surgeon, and is feeling a lot better now. :-)
    The odds this surgeon gave me was 90% chance of 'having significant improvement'. Two weeks after surgery I was feeling much better.

    I would be very interested in which surgeon you are seeing?

    Hope all goes well on Friday and that he has a plan to help you. :-)

    Take care and have a comfortable day.
  • 3 levels need to be fused BUT its not that simple he also said that he needed to finish off the previous operation before he could start his operation .all my lower disk have collapsed and although i have no nerve impingement {just damage from previous surgery and altered feeling in my right leg and foot}.S1/L4 damaged and need fusing .i have significant DDD and extensive arthritis .from what i could see reading between the lines the last operation was a botched job and this is what has caused me all the pain .i have looked up any alternative procedures and the only treatment is either just drug and rest {conservative} or aggressive the multilevel 360 fusion ..but he has warned me it would not be an easy ride because my spine is in such a bad way
  • Tony my guess is something happened in that last surgery that is scaring all the doctors away. It amazes me thatwe can get the surgical report and it sounds like they were at a picnic. Then you find out that all kinds of things happened. I found this out on my last surgery only because they had to put a staple in my scalp and my hand was black and blue.

    My father had a heart surgery a few years ago. Right after his doctors would not see him. That lasted about 3 years. ALong the way they found out they had cut the mamory artery and no one wanted him to find out. My guess is they waited out the time for filing a malpractice.

    Interestingly I am having the same problem with my surgeon from January. I probably have a good malpractice case for my eye problems. I went to him with my new CT report and he says no surgery. I went to the PM doc and he says no injection just go to a fusion and the head of a major hospital wants to do a multi level fusion. My feeling is he doesn't want to operate again so he is making excuses.

    My area of injury is difficult to work on. I have been very frustrated because I have to figure out if the doctor is telling me the truth or making things up because no doctor will admit they can't do something.
  • It is a hard decision to make.

    It sounds like you need something to be done to help you live your life, but that the surgery you would have would be a tough one.

    3 level fusions have a lower success rate than single level, and a higher complication rate. But there are success stories out there. Gwennie is so much better now, after her surgery, and there are other good stories. I think the surgeon is probably paramount in the success of the surgery.

    Have they given you what they believe to be the odds of surgery being successful?

    If this surgery was to improve your quality of life, it would probably be worth having to wait 3 years to get there. Without surgery, where will you be in 3 years?

    I know before I made the decision to go ahead with my surgery,I just didn't know what to do for the best.
    I felt really trapped by my back, and wanted to escape from it.
    My surgery was much more straight forward than yours, but I am soooo much better now.
    I know that I did make the correct decision.

    Where abouts are you in the UK?
    Who is the surgeon that you are going to see?

  • due to spine health rules i have PM then to you
  • Tony,
    It does sound like a big surgery and certainly with complications from your previous surgery it's no "picnic." Obviously you are the one living your life and it sounds like you have a pretty big decision. I have to agree a bit with one part of the thinking. It does seem like a long recovery period but where would you be in that time frame anyway?

    One thing I have learned. You just never know what to make of these doctors. They tell us one thing and the next time we go in they tell us something completely different. We fixate on one or two things they say and the next time we go in to talk to them they blow right over it like it wasn't even important or they never even said it. I'll be anxious to here how it goes for you Friday. Goodness knows you've had this appointment changed enough.

    And Laurie, I AM SO SORRY we have hijacked your thread. How are you? Your surgery date is fast approaching. Are you STILL feeling better about it? Please be sure and keep us posted.

    Honest I'm not always this rude.

    Begging forgiveness!!!!
  • for high jacking this thread
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