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Seeking Advice - trying to avoid 3rd sugery

BlaskBBlask Posts: 5
edited 06/11/2012 - 8:43 AM in Lower Back Pain
I'm 32 years old. Had a lamenectomy 4 years ago on L5S1. Last year the problem re-surfaced and the doc said 50/50 shot removing the rest of the disc would solve my problem (lower back pain, shooting leg pain, etc) or I could do a fusion which surely would work but has it's obvious drawbacks. I went in for the 2nd lamenectomy and have been pretty good for the last year.

Over the last 2 weeks after some yard work the problems have resurfaced. I have weakness in both legs, shooting pain down my backside and lower back pain. My hips are also hurting when I sleep at night and wake up to move around.

I'm sort of at the end of my emotional rope as I don't know what to do. If i do a fusion at such a young age my movement is limited and could cause me to have additional problems in the future with more stress added to the above discs. Anyone have any suggestions? In the past, injections haven't helped and I'm really not sure where to turn. I currently can't make it through a day of work without pain meds and I'm sorta tired of continuing to deal with these problems. I know this board is full of valuable info so I'm open to suggestions. I live in VA and am willing to see any "well respected" doc in the area that can lay it to me fairly straight.



  • Hi Blask,

    I can't really offer any medical advice as far as your specific diagnosis, but I am also a young spiney (I'm in my early 20's) and was also faced with a big surgical dilemma about whether or not a fusion at my age was a good idea. I can so relate to where you are now, with uncontrolled pain and the only surgical option comes with its own problems. The pain is emotionally draining, and then the stress of trying to make that "right" decision can really be tough.

    For me, I ultimately went with the fusion (an SI fusion, not a lumbar fusion like you are considering). I was warned (and rightly so) that fusions put additional stress on the levels above and below, and that doing this at such a young age would increase the likelihood of having these problems. It was scary, but I had to look at my current level of disability versus the risk of possible problems and disability down the road. It came down to the fact that in my pre-fusion state I was unable to carry out the most basic of daily functions without pain medicine, and even with medication I was still not super functional. My pain was out of control, and the surgery was the only option that really had a chance to bring things to a more tolerable level because I had exhausted all conservative measures. I felt like I couldn't let my fear of what might happen down the road cause me to miss out on restoring my life in the present. I was also encouraged because I knew that I was at the last resort point with my SI joint instability and the only option to correct it was surgical; In contrast, if I do develop degenerative changes from additional stress caused by the fusion then there is a chance those changes may respond to less invasive measures like PT and injections.

    It is a *very* hard decision because the risks are real and surgery cannot be reversed, so I would encourage you to learn more about the surgery and seek a few opinions before you make a decision. It gave me a lot of peace knowing I had exhausted all other options and that the fusion was my last chance at getting my life back. Depending on your history your surgeon should be able to give you a fairly good idea of whether the surgery has a good chance or not of helping with your current problems. A surgeon should also be able to help you realistically gauge the chance of having problems at other spinal levels from the fusion, and should discuss steps you can take to minimize excess wear and tear. For example, with my fusion I accepted that I would always need to avoid impact activities like running because it could cause excess stress to areas around my fusion. It might also be helpful when you start thinking about how your "movement will be limited" by the fusion, look at how limited your movement currently is. For me, the loss of motion and the loss of impact activities was no big deal because in my pre-fusion state my movement was limited by pain and I could not do impact activities anyways.

    Finally, if you have supportive family members or friends, now would be a good time to seek their support. If they can go to surgical consults with you to be an extra set of ears that would be great. I was terrified I was making a bad decision because I felt so desperate, and my family helped me maintain a more objective perspective to really evaluate the decision. I knew I was desperate for help and that I would jump on any surgery that promised relief, and having other people looking at the research and hearing the surgeon helped me make sure that I wasn't making a decision out of desperation for help.

    Good luck and keep us posted.
  • Hi,
    I am sorry to hear about your problems. It is scary when we face another operation. I am older than you, but am facing another operation on my back in June. It was a hard decision, but the reason I made the decision to have another one, was: I had a chance to get better than I am now. I know after my L5S1 surgery, I am walking a little better, but am in still pain and can't do as much as I thought I would be able to by now, but I also ask myself, if I did not have it, how much more worst off would I be?

  • so sorry you are facing this at such a young age.

    I think Lala is right that it's really a personal decision and one that you have to weigh the risks on vs. the future technology and your goals in life.

    Did you herniate the disc or was the laminectomy due to some other source issue? I would talk to your doctor about your concerns of restricted motion. While that is true, you also have to consider your restrictions now. A fusion is a big decision and there are several approaches to it (ALIF, PLIF/TLIF, XLIF, etc.) as well as ADR (artifical disc replacement). The TLIF & XLIF can be done minimally invasive from an incision standpoint but they are still big surgeries with hardware.

    One thing you may want to do is talk to the surgeon about a Pain Mgmt doctor to see how he would treat you if you opted against surgery. Then talk to a few surgeons about your concerns with the fusion.

    I agree that now is the time to turn to family members. I would have a person join you with your doctor visits. I took my husband to 7 "2nd opinions" b/c I realized that this decision was mine but that during recovery, I needed him to understand what I was going through, feel as if he & I could speak openly with the doctor, etc.

    I have not had a fusion.
    I am 8 weeks post op of a revision microdiscectomy on L5-S1 due to reherniation. If I herniate again, I am told I can "live with it" until I get worse or opt for a fusion. I hope I do not have to make that decision but if I do, I will approach it how I suggested you do. I will ask to see a PM doctor before making the decision to fuse.

    I will try to follow your posts to see what other insight I can offer from my experience.
  • Blask,
    It is never easy when the expectation of improvement does not appear after surgery and we are left with making a decision for the future. I was 36 with three young children when my turn came and to some extent my condition determined the necessity for some intervention. I could not stand up adequately, so a fusion for me was a better option that doing nothing and we all take that leap of faith into the unknown, of what the outcome will be.

    If you equate your laminectomy as not being successful you have that as a pre-existing condition and what inference that has on the potential for your fusion you would have to ask your surgeon, others experience are not you and it is always problematic even with identical history to equate that our surgery would have equal success either way.

    “Fairly straight” is a good attitude to have it keeps it real, even if you do not like what has been suggested you then know from a truthful prospective, if we set our expectation too high any outcome that does not match it can mean disappointment.

    We as you, do not have a crystal ball and some might suggest that equal hope and expectation was placed on your two initial surgeries without success, Pm might have some validity and its none invasive nature may give you some space to see how effective this is for you, rather than an irreversible fusion that mandates you accepting the results.

    Surgery has no guarantee and only you can decide how much you can endure and the quality of life this provides, these are only proposals and it is never easy.

    Take care.

  • Just thought I'd join you in your dilema! I'm quite a bit older than you, but with the same problem. I too have had two back surgeries (about 5 years ago) and ever since have tried loads of different treatments like: pain management, facet joint injections and epidurals, strong medications (which produce various unpleasant side-effects), Discogram etc. etc.

    I went for an appointment last week and have been placed on their waiting list for a 2-level fusion (Posterior lumber interbody fusion) on S1-L5 and L5-L4 (I think I've written that properly, sorry if I haven't!).

    Anyway, I have exactly the same battle (physically and mentally) about whether to have surgery or not. I think, from my own experience, that as my back problems are having a significant adverse affect on my quality of life, work life and sleep pattern and, that I've tried all conservative methods over the last 5 years knowing that my back is only getting worse anyway, I've decided to go for the surgery. It was offered to me a few years ago and by the time I made up my mind, the surgeon had left and the new consultant who took over didn't think it was an option for me at that time (or because the cost of surgery was far too expensive, I don't know).

    My daughter announced about 2 weeks ago that she's got a promotion and the company want her to work in the USA from about JULY!!!! This has made my decision a little easier because now I want to be able to sit on an aeroplane, long haul, which I cannot do at the moment. In fact, driving or sitting for any length of time is most uncomfortable.

    Because MRI has shown DDD, spinal foraminal stenosis and facet joint osteoarthritis, the PLIF surgery deals with all 3 in one go and I have been told that without surgery it'll get worse as I get older (which it has in the last 5 years as I've said).

    I agree with what everyone else has said and they have advised you well. This was effectively my THIRD opinion over the years and you have to consider what you are able to do physically now, whether your pain level will improve with a course in pain management first and what realistically you can expect in say 5-10 years time if you DON'T have surgery. Your family can help you to look at things from a different perspective perhaps.

    I so understand about the disrupted sleep due to the pain and the emotional stress of trying to work through the day (without making mistakes due to lack of sleep and pain) and, in my case, having to lie down in the evening just to be able to go to work the next day! Also, not doing anything that will cause more pain over the weekend, again, just so I can go to work again on Monday. All I'm doing is 'living to work' which I believe is no life at all for me personally.

    Gather loads of information, ask lots of questions, join a spinal support group (if there is one near you).

    Please keep us up-to-date with whatever decision you make and, if you do seek further professional opinions, let us know how you get on OK? Many of us have been in the same situation, and we're supportive of whatever route you choose to go.

    Take care
    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 !!
  • Thanks for all of the positive support and feedback. It's so darn frustrating not knowing which direction to go or where to turn. I'm definitely going to get 2 more opinions from well known orthos in the state before I do anything. I will also look in to the PM route as well - I would have never thought of that. I've tried injections in the past with no luck either series but would be willing to see what else is out there.

    Has anyone gone the chiropractor route? I always thought they were selling snake oil but I'm willing to try anything at this point to avoid a surgery that has lasting long term downsides. I have also re-enrolled in some private pilates work to help stretch me out as I feel pretty tight in my back and hip flexors. I am hoping that provides some relief, if only temporary. It's really hard to make wise decisions when you are full of pain and that occupies most of your thoughts.

    Part of my fear is what happens if the fusion makes it worse... or if 10 years from now it's worse than it is now? I don't have kids yet but that's coming quickly and ideally I'd like to be able to run around with them, crawl on the floor, and play ball with them.

    So frustrating...

  • Blask,
    It is understandable that as the pain increases we are tempted to try some proposals that in another scenario we would be hesitant, I would never rule anything out, you would have to ask the chiropractor if they thought your condition would benefit from this process that two laminectomies failed to provided a satisfactory solution. You are you, and have to be realistic in the expectation of any potential treatment, only in having such treatment would you know if it would help or not unless you were told the opposite.

    One might surmise that a laminectomy would not have been performed if the possibility that PT would produce a more effective results, ask your PM team and get the answer you are satisfied with, for clarity and peace of mind.

    CBT may help you with managing that persistent thought process you mention, not thinking of pain went it is constantly with us is very difficult, that skill takes time and competence and your desire to keep active gives you some control of this inflicted condition, many here have experience of how living in pain is decades later and you are not alone in wanting some reassurance for those difficult questions we all had.

    Well done you, you have a plan and continue forward toward some improvement.


  • Since you asked about the chiropractor route in your subsequent post, I forgot to mention that I too had tried that path.

    I can only say (from my own personal experience) that you should be cautious of this approach and, if you do consider it, try and get some testimonials/feedback first from other people with back problems who have undergone this treatment. The more information you get the better informed you will be.

    I certainly don't want to scare you and please remember that not everyone's experiences are the same, but when I first herniated my disc and couldn't walk straight, whilst the chiropractor enabled me to come out of the first session standing upright (which I thought was a miracle at the time) - after having intensive treatment every other day for the first week and then every 4-5 days thereafter for a month, I started with sciatica after the first week which got increasingly worse - to the point that I couldn't straighten my leg when walking and could only sleep (up to 3 hours) with my right leg bent. I didn't have this before the chiropractor sessions and obviously, this could have been a natural progression of my herniated disc anyway. Also, perhaps the advice I got from the chiropractor was wrong: in that I may have undergone too many sessions too quickly. I really don't know now.

    Now, I'm not saying that the chiropractor sessions directly led to my two spine operations a matter of two to three months later, but the doubt has always been there in my mind. It was quite aggressive manipulation at the time and I [wrongly] thought 'no pain, no gain' when his treatment left my back in agony for a couple of days afterwards. I have since been told by a previous consultant that if anything hurts my back to that extent, then stop it! Obviously not all chiropractors are the same and if you do try it and it makes your back worse afterwards, then perhaps you should think again. If it doesn't, then great!

    I'm not sure what other people think about chiropractors, perhaps they'll share their experiences on this thread. Hopefully theirs will be more positive.

    I know that physiotherapy can help to strengthen the supporting back muscles and therefore, when you do bend/stretch/left etc, then it's not wholely from your back muscles and so it can share the load and help to protect your back a little more. It certainly helped me a couple of years ago, though for various other reasons, I too am now facing the surgical route which is very daunting, I agree.

    I really hope everything works out well for you now and in the future.
    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 !!
  • please be very careful with chiropractors {that's not to say that chiropractors have a very good place in the pain management system for some} but not for us with very bad back and have been operated on .and when you are at the :you need a fusion level: then in my opinion a chiropractor could do you more harm than good .i sent you a PM as we are in the same position .i still have not made my mind up .if you wake up in pain and are like that for the rest of the day {like i am } but i still can do stuff ..would /should you have the op ???? or do we/i risk becoming unable to walk and incontinent .in the hope of being pain freeish ..from all the information i have amassed once your back has got to the fusion stage the surgeons are desperate to offer us something to shut us up!!at any cost ..i don't about you but i am still youngish 44 with a family and don't want to be wheelchair bound but i ..like you ...am sick of the constant pain and suffering ..i don't have the answer blask i wish i did ..statistics show that 2/3 fusions offer no/little pain relife and in fact make things worse .my surgeon has promised me nothing regarding sucsess what has your said to you ?? i am almost cartain that i wont be going ahead with more spinal surgery .but if you go fro it i wish you all the luck in the world
  • I can identify with your problem. I am somewhat older but have been very active my whole life. I had a laminectomy (L4-S1) in 5/01 followed by a fusion (L4-S1) in 12/01 when the pain did not abate. Now, nine yrs later, my problem has propogated up the spine to L2-L3. I am having my second fusion L2-L4 connecting to the first fusion making it a L2-S1 fusion in seven more days. My doc is also putting a device called a Globus Transition at L1-L2 to hopefully prevent further migration of the stenosis. This is a relatively new device that apparently is being promoted as a preventative to further problems. I don't know the details of your case but you might ask your doctor about it. Good luck.
  • Hi Blask,

    I have had two discectomies at L5-S1 and then ultimately had a fusion 14 weeks ago. Regarding your question about mobility, in my opinion from my own experience, I am pleasantly surprised by how well my spine moves after an L5-S1 fusion. My understanding from reading that I have done online is that there really isn't much movement at the L5-S1 disk in the first place, so a fusion at that level doesn't really limit you very much.

    The thing that I find most disturbing in reading many many posts on this site is that there seems to be a pathology of once you do one fusion, you end up with another and perhaps a third. Maybe this is the worst case scenario? The people who are cured after one surgery probably don't come back here to say so.

    I am struggling with an issue related to scar tissue build up which is one common complication after surgery, but my doctor believes that it will resolve with continued PT.

    I'm not a doctor, but I have heard that bilateral numbness or pain should be treated with some urgency. Please seek out the best doctor that you can possibly afford, and get at least two opinions. Best wishes in resolving your pain!
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