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Repeating Discogram? Desperate for opinions...

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:43 AM in Chronic Pain
Hi all,

I am *really* desperate for your opinions on this. I'll try to keep it short, but I'm truly agonizing over the next step in my treatment, so I really appreciate it if you have time to read through this.

My PM doc is recommending that we do a repeat discogram, and I'm really unsure about whether or not this is a smart next move.

I had a discogram in 12/2008 that hit all the discs from L5/S1 up to L1/L2. The only disc that was symptomatic was the L2/L3 disc which produced concordant pain. All the other discs were not painful, and the CT showed that the discs were normal. The PM doc that did this was at a major rehab hospital, so I know it was done properly (that doc moved out of state, so I am now with a different PM doc). The symptomatic disc was treated with IDET, and I got great results.

The reason they want to repeat the discogram is I had an epidural at L5/S1 and had significant pain relief, but the relief only lasted a few days. I also had an epidural at L1/L2 a few months ago which also gave me relief of some of the pain higher up in my spine that is only just now wearing off. I have tarlov cysts at these levels (L1, L5, and quite a few on my sacrum), which although rarely symptomatic, we are starting to strongly suspect that these may be the source of my trouble because of my trauma history (which is known to cause asymptomatic cysts to become symptomatic) and the fact that my symptoms match. If the discogram rules out the discs it will give a definitive diagnosis of symptomatic tarlov cysts...

A complicating factor is my most recent MRI shows a broken off piece of gel sitting in front of the T12/L1 disc, but the disc itself looks healed (no bulges or anything unusual). I likely had an anterior herniation from my fall that was never diagnosed, and now all that is left is the little bit of gel sitting in front of my spine. The discogram in '08 did not hit this disc, so theoretically this disc could be painful...Here's what I'm agonizing over:

1) I have a hard time believing that asymptomatic discs have become symptomatic in the last 1.5 years, since I'm young (early 20's) and my trouble is clearly from the trauma so whatever is wrong now was also wrong in '08.

2) Is it worth checking the T12/L1 disc? If the pain is from the gel in front they can't treat it. Theoretically if just the disc is inflamed I suppose IDET or something could be an option, but with the overwhelmingly positive response to the L5/S1 ESI I feel like it's unlikely my symptoms are coming from that high up. I also have highly localized pain at L5 so it seems unlikely that such localized pain is referred from the T12/L1 disc...

I guess basically we're at a point where this is either a disc problem or a tarlov cyst problem. My symptoms match both, with the biggest pain complaint being an extremely low sitting tolerance and increased pain with flexion and extension (with the primary pain being extremely localized at L4-L5ish). In my gut I feel like because I had the negative discogram in 2008 that it is highly unlikely that this is a disc problem. My *main* issue with repeating the discogram is that it is a high radiation exposure test involving a lot of fluoroscopy time (because they will want to do from L5/S1 all the way to T12/L1) and a CT scan. I think it is also the issue that we're really looking at *untreatable* problems so I don't know that the discogram will change the outcome. Finally, it's repeating a test I've already had that was negative...

Would you guys just go ahead with the discogram?? Am I correct that with the negative discogram in 2008 the discs have pretty much been ruled out?? I think the agony with the decision comes because I know that by repeating the discogram we can be a thousand percent sure that this is not treatable disc pain, because with the positive ESI response the only alternative is an untreatable problem (the cysts). Thank you all so much...


  • You laid out your quandry very well, but your situation is very complicated. I have a couple questions: first, what are your major pain symptoms? Do you have worse pain in your back or in your leg?

    Do you know if the ESI at L5-S1 was also a nerve block? Did it have a numbing agent in it too, so you felt no pain for a number of hours, and then the pain gradually returned?

    Many spinal specialists do not perform discograms, considering them too painful and too much exposure to radiation for the subjective information that is revealed from them. The fact that all those discs tested "negative" really only indicates a snapshotin time of how you reacted on one particular day. It is a test that is too subjective to be considered a definitive test. At least this is what doctors that do not order discograms would tell you. I'm sure the ones on the other side of the issue would dispute the basic concept of my comments!

    Do you know if you have any spondylolisthesis at l5-S1?

  • Thanks for the reply Gwennie, and thanks so much for the articles you PM'd me. I'm a research junkie, so that's definitely something I appreciate.

    Main Symptoms: I have severe back pain when I sit. It is highly localized at L5, and there is also a localized pain at T12 that occurs when I forward bend and occasionally with sitting. The pain is sharp in nature, and eventually causes the muscles to spasm. I do not have any neurological symptoms, and no symptoms in my legs. Flexion and extension both cause an increase in pain (I have had medial branch blocks to eliminate the facet joints).

    ESI Details: The ESI had cortisone (dexamethasone) and an anesthetic (marcaine). I felt minimal pain for 3.5 hours after the ESI and then of course the pain came back to normal, then 2 days later I had significant symptomatic relief that lasted 3 days.

    I do not have spondylolisthesis. I did have a sacral fracture at S1 and very minor pars defect at L5, but both have healed and appear normal on current imaging studies. When I fell my back hyperextended (which is unusual), so that is why the trauma was to the posterior of L5 and S1.

    Hope that helps. Again, I know this is kind of a long post so I really do appreciate the feedback because I'm really trying to make a good decision.
  • So what would the proposed treatment be for the tarlov cysts?

    Are they offering any alternative at this point other than just another discogram?
  • If I were in your shoes, I would explore the area around L5-S1 being the pain generator first. I think it is most likely that something is going on there, rather than higher up. I think most of your conclusions make sense. Whether they are medically accurate, I couldn't say...not being a doctor, and all that. ;)

    I think you are extremely fortunate not to have any neurological symptoms, or damage!
  • Thanks Gwennie :)

    To answer your questions HappyHBmom:

    1) As far as tarlov cyst treatments, it's really one of those things where the treatment can very well be worse than the disease- There is a very high risk of nerve damage, meningitis, and other scary things and only a few doctors in the country (I believe 5) that even attempt treatment because the outcomes are generally poor. I haven't gone too far down that road since I don't have a definitive diagnosis, but my preliminary research and the info from my doctor have me thinking that we would pursue pain management rather than specifically treating them.

    2) No alternatives to the discogram have been recommended at this point because I've pretty much exhausted what they can do diagnostically. The good results with the ESI have pointed us in the right direction to look and was essentially diagnostic, but I think the only follow-up testing they know to do to help narrow it down is the discogram.
  • I'm not going to tell you what the Doctors should or should not do. That's something that should be left to the experts who have the college degrees and the years of experience practicing medicine, not some person on the internet who's had a couple of back surgeries.

    As for the Discogram, it's my understanding that the test is most useful when surgery has already been decided upon and the surgeon is trying to clarify what they have to do.

    I do have a question for you, If they find something wrong with one of the discs, are you ready to have someone work in the area of the cysts that could be made worse? You seem to have a good head on your shoulders and I'm sure that you and your medical team will come to a decision that benefits you in the long run.

    Have a nice weekend.

  • I guess my question is, what does the discogram change as far as treatment? If it's positive, what do they do? If it's negative, what do they do?

    I don't really have any information, and these are likely already questions you've answered for yourself, but just in case they aren't, it's the process by which I'd make the decision. How will it affect future treatment?

    The road you seem to be going down now in your thinking is "what is the likelihood of it being positive?" But that is only one part of the decision, in my mind.
  • discography is where they inject a jell in your disc and ask you questions about your level of pain. you are under but still awake but you don't remember. the only thing i remember is that it hurt like hell. it is a diagnostic tool to see if your disc(s) are herniated. the jell will spill out if it is. i had to have another one before my first surgery to make sure that one was not or was herniated. it was so i had L4-5 fused. if dr thinks you need one for diagnosis before surgery so be it, but if he just want to do it for no reason i would not do it again.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • From my experience: if your heart does not tell you to pursue something, it may not be a good choice to do so. I don't know anything about Discograms, but it sounds like there are a lot of risks involved, and not much promise of a positive outcome.

    "I think it is also the issue that we're really looking at *untreatable* problems so I don't know that the discogram will change the outcome. Finally, it's repeating a test I've already had that was negative..."

    Go with your heart!
    I wish you the best of luck and you will be in my prayers.
  • It really sounds to me like you are leaning away from the discogram, which I can not blame you. I had my first one 11 days ago L1-S1 and WOW, it was very painful. As indicated in an earlier post. Discograms are very subjective and it is even difficult for the discographer to truly interpert what you are feeling. After mine discogram my NS is now sending me for a 2nd opinion to an ortho spinal specialist. Disco's are not as diagnostic as some believe and with your history.... what is it your Dr. is hoping it will show??
    Good luck to you!
  • Thank you all so much for your opinions and support. I was really torn over what to do, and you guys have been so helpful as always.

    I took your words to heart and felt really prepared going to my follow up appointment with my doctor. We have decided *not* to repeat the discogram. With the pathology of the cysts and the previously negative discogram for the levels that could have been affected by the ESI that I responded so positively to, my doctor agreed that it is much more likely that we are dealing with symptomatic cysts rather than a disc. As far as the disc issue at T12, even if it were to be painful during the discogram since it was an anterior herniation there would likely be no treatment- but while there is some discomfort at that level the main pain is really lower down.

    So, for now we are continuing to work towards coming up with a definitive diagnosis on the cysts and figuring out what the implications of that diagnosis will mean as far as long-term pain management. It's a journey as always, and I truly appreciate your help in making the decision about the next step.
  • Thanks for the update. I was going to ask you today what the final decision was. I'm glad you don't have to go through that painful procedure and hope that the journey to find a solution isn't going to be too long. I had no input for you on this thread, but I've been reading it and glad you found so much help from fellow members.

    What we go through sometimes just amazes me.

    Hang in there. Sounds like you have some good docs working with you and that's so important.

  • I'm glad you've made a final decision :) It sounded like you thought there was enough evidence to make an educated decision. I hope you find some good treatment options and great pain relief!
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