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

Scheduled for L5/S1 Fusion Next Week For Benign Tumor ... But Can Still Back Out. Advice?

doubles2006ddoubles2006 Posts: 3
edited 06/11/2012 - 8:58 AM in Back Surgery and Neck Surgery
Hello all,

Thank you for the opportunity to post here. Let me give you a quick history. I found out I had scoliosis at about age 26. Thoracolumbar curve about 18-20 degrees. No real pain at the time. Early 2009 - pain onset. No real definitive diagnosis until late 2010 (see below). Before then, it was assumed either my small bulge at L4/L5 or facet arthritis at right L5/S1, which did exist. I went through all modalities - injections, chiro, PT, etc. No real pain relief.

Late 2010 - my first CT scan. Showed a probable tumor on my right L5/S1 facet joint (see my profile picture). The tumor is called an Osteoid Osteoma. Happy to prove that this all wasn't in my head, we started a treatment sequence of RadioFrequency (RF) Ablation of that tumor. The first RF Ablation seemed to reduce my pain about 40-50%. That was good. But the pain was still there. Tried a facet injection to see if that was being masked by the tumor. No relief. Tried a second RF ablation. No further relief.

In early 2011, I decided to consider surgery. Saw about 5 surgeons. Picked one. Actually had it scheduled for early October, but at the pre-op my pain was only like a 1 and we postponed. I was told to keep a pain diary for many weeks. I did that. October had an average pain score of about 3.5 (I know subjective). It got as high as 7 on a few consecutive days. It was during that time I scheduled this December surgery. In November my pain score went down to an average of about 3.0. In early December, before my pre-op, my pain increased again. At the pre-op, my pain was about a 3-4.

I take 50mg of Tramadol every evening before bed. And during the time I kept a pain diary, I took a total of 5600 mg ibuprofen, 2000 mg Tylenol, 3250 mg aspirin. As a side note, there were two days in November, I took no meds at all, not even my nightly dose of Tramadol. I thought I was recovered. Wishful thinking, I guess.

I know I don't have the worst pain in the world. And maybe I take relatively few medications. But knowing I have that tumor in my body, the fact that I do live with some pain probably because of it and the fact I hate taking medications got me to thinking that surgery would be beneficial for me.

Now, again, I am having second thoughts. Actually, I really, really scared and nervous. Am I doing the right thing? The fusion part is what is scaring me the most. The surgeon says that have to cut most of that facet joint off to remove the tumor and thus fusion is necessary to stabilize things afterwards (I actually did have two docs say I could risk not fusing now and see how it goes -- I could always fuse later; but most the three others I say say fusion is the way to go).

Anyway, as it stands now, I hurt, but I am able to pretty much adequately function (albeit very grumpy sometimes). So I don't know whether I should postpone again to see what happens 6 months down the road.

Any advice or similar stories would be appreciated. On one hand, I have a benign bone tumor on a very arthritic facet joint that may never go away. It produces pain and may have contributed to my scoliosis. On the other hand, I could wait, live with the pain, see if the tumor disappears (sometimes they do after 2-3 years) and continue, reluctantly, to take medications. It would be the 2nd time we postponed with this same surgeon, and I really like him -- I just hope I wouldn't get "black flagged" if I do postpone again.

Thank you very much.


  • SavageSavage United StatesPosts: 5,427
    A lot going on. I would think only you and your doctor can make that decision.

    I don't know what you mean by "black flagged".. that no one would do surgery later if you postpone again?

    There may be situations that call for emergency surgeries or it's too late, but if not that..docs should understand your caution and wanting more research and fact finding.

    I think most people are more comfortable when they know why they are in pain..like put a name on it and then take care of it. It's not easy..even when it's a tumor...which sounds quite serious.

    Talking with your doctor about the pros and cons of surgery vs waiting and watching seems the most reasonable thing to do.

    Good luck with your decision and please let us know how you are doing!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Thank you very much the replies @savage and @optimist

    @savage - when I said "black-flagged", I meant that my current surgeon, who I like, will not perform surgery on me if I postpone for a 2nd time. He would be pissed :-) That said, in the pre-op he knew I was a bit hesitant and told me straight up that I could postpone the day of if I wanted to. He said it is "my body" and he could go do other things. Ha Ha!

    @optimist - Yeah, assuming they are correct in the analysis that this is an osteoid osteoma, they are known only to be benign, cause pain and actually can produce scoliosis, sometimes painful. You make a wonderful point about adjacent levels. L4/L5, which is above what would be the fused L5/S1 level, already is bulging a little bit and has lost a lot of its water (desiccated?). And it is part of the 18-20 degree curve I mentioned. So I got to thinking how much more stress that level could handle. I have to imagine that level will go sooner with this surgery, unless, by some miracle, getting this tumor out of me helps to straighten my spine a bit.

    I can tell you that I am leaning towards postponing. My surgery is scheduled for next Wednesday. To be fair to possible wait list patients, I was thinking of giving me a drop dead date to cancel of tomorrow (Friday). But I am not sure I can make my decision by then, and may need the weekend. It is a very hard decision. I have two young kids who always cross my mind when making this decision. I am not really limited now, except with some pain. I would hate to put myself in a position where I am more limited because something went wrong with the surgery or something. Then again, the surgery could make me limitless with no more pain. Ugh!

  • It sounds you have done your homework and really educated yourself well on your options. It sometimes is toughest to decide when a procedure is "elective", the pros for surgery - it sounds like you are mentally prepared now, want the tumor out, and have gone through all non-surgical options. So I would assume there is zero chance of this tumor progressing to an actual cancer or sarcoma?
    On the other hand, you are young, any fusion will increase the risk of adjacent disk disease plus you probably have seen enough on this forum to know not all fusions have happy or positive endings, and you still have many options to go as far as pain management goes.
    I know what decision I would make for myself, but I am not you, so that is not even going in here. As far as offending your doctor by cancelling, I can tell you that some doctors are easily offended; but I think that's moreso the nature of spine surgeons...I would not let that factor into your decision as there always another surgeon to do the procedure.

  • Just a quick update...

    This morning I decided not to have the surgery. I could have technically waited until the day of surgery, but I wanted to give wait list people a chance to get into my slot, if that was possible.

    It was really hard to make that decision. I guess it all boiled down to me not being mentally prepared for the permanency that is a spinal fusion, especially how it might affect an already scoliotic and nearly desiccated L4/L5 level. Once you go down that road, that's it. No turning back. I want to make sure I have exhausted every other available option to me for getting rid of the tumor, because I can always have the fusion in the future. I may have exhausted every option and then I am back to square one with this decision again.

    Obviously I could have made the wrong decision here. I now still will have to live with this pain while the fusion may have taken it all away. But, then again, sometimes fusions are not a panacea either.

    Thanks for letting me share my story here.
Sign In or Register to comment.