Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test


AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:20 AM in Back Surgery and Neck Surgery
Hello everyone!

My first post here, but have been reading these forums for over a year since I first started battling the pain so many of you are familiar with. Mostly lower back pain, but some leg pain occasionally. Though my leg pain tends to be down the front of my thighs and that seems to be uncommon. Or at least I rarely find it when folks describe their leg pain.

My pain began suddenly, with no prior trauma (that I can recall anyway) and an MRI showed mild to moderate disc protrusions at three levels--L2/3, 3/4, and 4/5. I've spent the last year doing both land and water therapy, have purchased all the therapy equipment so I can continue at home, two epidurals that actually made things worse for a couple of weeks, discogram, etc. etc.

I'm fairly young at 33 and so had convinced myself that I could beat this without surgery. However, my situation continues to deteriorate, my meds continue to increase, and my latest MRI shows that levels 3/4 and 4/5 are now significantly worse. L2/3 is about the same as before, but it had been the worst level on the first MRI.

This has caused me to finally agree to at least consider fusion--most likely for all three levels. I'm finally exhausted and tired of being in pain all the time. I've been seeing the same OS and his PA for this entire ordeal and definitely want to get a 2nd opinion before I completely make up my mind. I haven't had the final surgery consult with the OS yet, as they at least want to wait until Fall so I won't have to wear the brace during this humid Tennessee summer.

Sorry for the long story, but my question is this: If you could go back to this point in time where I am now--before your surgery, before your 2nd and 3rd opinions, what would you have done differently? What questions would you have asked your doctors that you didn't know to ask before? I have seen several lists of "questions to ask your doctor" but I wonder if those of you with real experience would share what you would change if you could.

Obviously all of us are different. I actually don't think I've read of another case exactly like mine. Oddly enough, my L5-S1 level seems to be fine. I'm an obsessive researcher (took me 2 months to research which toaster to buy!) and have learned a lot, but I still feel like I'm missing some things. How do I know if my doctor is the best one for me? Just because I like him and he's done a lot of these surgeries with good success rates? Is that enough? Or should I be asking something that I haven't thought of yet?

I apologize for the incredibly long post. I will try not to always be so wordy. ;)



  • Hind is always 20/20 they say.

    I am still hospitalized after a 2 level PLIF S1 to L4 fusion.

    I also took a long time to research and study and also do every conservative treatment I could before making the final decision.

    This is why, despite some complications, I am not regretting my decision. I am still 100 percent on board with my decision.

    I believe that once you have truly researched and tried all the alternatives when it comes to crunch time, it's got to be your gut decision. It's you that has to live with the consequences.

    One thing, by being informed, by going through the whole process and not just making some snap deicision, you will be a better patient.

    I know that my time spent reading up and preparing has really helped me to be able to know what is going on, to aks intelligent questions, to do the walking and breathing and do what the nurses and Dr. tell me to do with a willing heart. I know I am getting better care becauase I am deliberately making myself into a pattient who is easy to treat. No crying, whining or complaining.

    I state what I need, I work to understand my instructions and I know that this is what led to the night nurse going to such effort with me when my right leg went numb. She pushed to get the CT and MRI done that led to the second surgery. If not for her, it might have been weeks later and I would have more nerve damage.

    Okay, I'm the one rambling now - new medications this evening.

    Keep us informed - and hey, that velcro brace I got is in oh-so-fashion black and it is very slimming to the figure :) When I'm up to it I'm going to post more about the fun and weird and good stuff to know!

  • p.s. forgive my typos - post surgery typing is rather difficult. I'll edit the typos out when I am feeling better
  • Jenn- Welcome to spine health and I'm so sorry for what you are going through. Any thing I say will come from my own experience and is my own opinion. As you already know, consult your doctor about any questions you have. That being said, I am 14 weeks post op a 2 level fusion surgery. It was and still is a very hard recovery. The hardest thing physically and mentally I have had to go through. I still have a lot of leg pain and numbness. This can last for quite awhile or maybe even forever. It is to soon to tell in my case if surgery was sucessful. I can tell you that a 3 level fusion is MAJOR surgery and recovery. A lot of doctors aren't very forth coming about how hard the recovery will be. So if one doctor wants you to do it, get at least 1 other opinion. I got 5 opinions on my surgery and waited several years before I had it. Am I glad I did it? I don't know yet. But there are many people out there that knew right away that they made the right decision. It's a hard decision to make so it your not sure take the time to wait.
  • I adore my NS, and she specializes in cervical vertebrae, so I feel like I was in great hands surgery-wise. Getting back on track, and back to normal life, is a much longer process for many people, and one she has been less helpful with. I have found physical therapists to be a great resource in this area, and my internist even mentioned seeing a rehab doctor when I was really having trouble. Overall, I wish I had fully digested how long this process could take - not that it would have changed my mind about the surgery, but it would have helped, I think, avoid some dark days this spring.

    Good luck.
  • you'll know when to go, when I couldn't get ready for work, it was time.

    I've had alot of problems probably from waiting too long. That being said I had joints not functioning,unusual rapid disc disappearances and disc height loss.

    I didn't see anywhere in your report that you posted about other processes going on I see the protrutions are worse and hear/feel your pain but I would ask why a fusion and not try discectomy/laminectomy 1st? I asked for me too and the level that was ultimately fused above the really bad one turned out to be just as bad so it wasn't an option.

    My disc above the fusion is already showing new joint arthritis(which is also unusually fast), so my next question for your consults would be How long could L5-S1 take the beating of a 3 level fusion? It already takes the most beating so that would be something to talk about.

    If a doc says he'll fix you 100% don't go back, there are no guarantees and they should discuss this too. If they say they can for sure fix you my experience is if there are problems they'll dump ya(I'm a RN and unfortunately this happens).

    That was my last question on my long list for the docs is What if there are problems what will you do? (my doc has been with me throughout and has been true to his word)
    Good luck!!!!
  • Thank you so much for your replies. Sometimes I think all my research is working against me, because I know that there are doctors out there who aren't forthcoming about recovery times and realistic outcomes, so I'm not sure if I'll never get to a place where I really trust the surgeon. So far, I think my NS has been honest with me--no claims of 100%. In fact, he's said that he usually tells patients that they can expect about 75% of pain relieved, but in my case I might only expect 50%.

    pettynme, you're exactly right about the L5-S1. I worry about that also. It's the instability that the doc says needs fixing... and he thinks at this point I'll just continue to deteriorate until it gets fixed. But I do worry that L5-S1 just won't be able to take it. I've made my 2nd opinion appt so we'll see what this guy has to say. He's a neurosurgeon--hoping to maybe get a different perspective.

    Thanks again to all of you. Very good points, and chicagogal, I hadn't even considered the rehab/PT folks in that way. I wasn't impressed with the PT folks I've used over the last year so I'm adding that to my search. I'll need to find someone I'm more comfortable with.

  • Jenn,

    Why is your OS recommending a fusion? What were the results of the discogram? Did it reproduce your current pain or introduce unfamiliar pain? I don't understand why your surgeon would consider a fusion without first trying to relieve the pressure from the discs by performing a discectomy and decompression procedures. Do you have DDD where you have lost a lot of disc height?

    Fusion should be a last ditch procedure, so I'm curious why your OS is recommending that instead of something else.

    I guess the big question I would ask, and I did, is what is the advantage of this treatment over something else. Ask for the pros and cons of the different treatments and the possible outcomes of each one.

  • Hi Dave,

    All very good questions, I'll try to share more of what I know at this point.

    The discogram did reproduce my pain. L2-3 showed as a mild pain generator, L3-4 and L4-5 as moderate to severe, and L5-S1 showed mild as well, even though it looks nice and plump on the MRI.

    As my OS explained it, this latest MRI does show loss of disc height. My pain is generally not nerve pain, even though the MRI shows nerve impingement at the 3-4 and 4-5 levels. I do have radicular leg pain occasionally--3-4 times/week, sometimes right, sometimes left, sometimes both--and always down the anterior thigh. (My interpretation here--I think that seems to correlate with the nerve roots at L2-3.) Basically, he says if we were looking at leg or nerve pain, he'd try the discectomy first. Since my pain is predominantly mechanical back pain, and seems to be increasing with the loss of disc height, then a fusion is indicated. He hasn't ruled out discectomy for the L2-3 level, as the pain there does seem to be more nerve related. He's certain, however, that a fusion is needed for L3-4 and L4-5. But, he's also considered that L2-3 may not be healthy enough to sustain itself once L3-4 and L4-5 are fused, so the best action for L2-3 is just undecided at this point. Putting some sort of dynamic stabilization system at L2-3 is another option he's considering.

    The latest MRI also showed loose fragments at the L3-4 and L4-5 levels, but I'm not certain that this contributes either way to a fusion. I've read plenty of reports where fragments are spontaneously re-absorbed, but this did seem to cause my OS more concern than I would have thought. This was one of those things that I should have gone into more detail about with him, but at the time I wasn't familiar enough with "fragments" to know what to ask.

    So, that's where I stand now with this particular OS. Do those answers correlate to anything in your experience? Notice he's certain about a few things and I'm not necessarily convinced yet. I'll have a chance to see at least one NS before I see my OS again in September, so if I get any differing opinions I'll have a chance to ask him these questions again. If I'm not comfortable that all options have been considered, I just won't go through with it and I'll keep going until I find the right doctor and the right solutions. I guess my biggest worry is that I won't recognize "the right doctor" and "the right solutions" when they come along. So many people, and so many different stories, sketchy clinical studies, unethical surgeons, medical device companies, yadda yadda. It feels completely overwhelming sometimes.

  • I just saw my NS yesterday and we were talking for a long time about different treatments and Insurance Co.

    If there is not enough disc left like in my case there really isn't another option. There might have been 17 months ago when I started this journey- but I digress.

    I too have smaller herniations and loss of disc height (almost all bone on bone on L5/S1). I am hoping that my L3/L4 can remain healthy for long enough that I might be able to get a ADR at that level 10 -15 years down the road when it is standard.

    Good luck,

  • Jenn,

    Although my main problems were at lower levels, your results are very similar to mine. If you follow my fusion recovery link in my signature, I have a complete diagnosis of my lower lumbar spine. My disco reproduced my pain at 1 level and produced unfamiliar pain at the level above. Essentially, the level above wasn't generating any pain but was degenerating. My surgeon waited until he had me open before he decided what to do with that level. It turned out that he wasn't confident that the level could withstand the increased load so he fused that one also.

    Unfortunately, the game time decision level has caused me the most problems since my surgery. I believe my surgeon made the right decision, I'm just a casualty of the risks that are associated with this major procedure. The more levels you have done, the longer the recovery period.

    Your OS sounds very thorough and upfront in their explanations. I repeat, the most important information you can get from you surgeon is the what and why of they propose. The worst thing a surgeon can say is "this will fix you" and assume you are incapable of understanding the why.

Sign In or Register to comment.