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pain for months since surgery now negative discogram, whats next?

hotcoffee29hhotcoffee29 Posts: 327
edited 06/11/2012 - 8:39 AM in Back Surgery and Neck Surgery
Hello Everyone,
I hope you are enjoying the holidays and getting all our shopping done despite our pain!!

I have posted several times before about my on going pain since my laminectomy and discectomy at L5-S1 in July, I don't write to often but I do enjoy reading your posts and I know you can all be so helpful so here I am again just looking for some friendly advice.

Before my surgery for my large herniation all my problems were down my right side, since surgery all of that went away but I got new pain down my left side, well over the past 5 months I have had another MRI, which showed nothing but scar tissue and I have had 2 more steroid injections, meds and Lyrica, nothing has worked, my pain continues to get worse in my low back, mainly on the left along with left sided leg pain, heel pain, sole of the foot pain and weakness in my left leg.

I went for a discogram yesterday, I was terrified, spent half the day in the hospital, and I was unsure when to tell him I had pain etc, so i felt I did it all wrong!! It was painful but not the usual pain I feel and nothing excruciating so he told me it was negative, my surgery is healing well and a fusion will not be rquired as he thought going in thats what my problem was but this test showed no problems with my disks.

I have been in complete agony since the test yesterday, I couldn't even go to work today, but now what? The tests don't show anything wrong and now the discogram was negative, how can my surgeon possibly help with the pain I am having when it doesn't show up anywhere, I know he is trying to help me but I can understand if he gives up on me, but this pain is hard to live with, the surgeon mentioned to my husband that he wants to do a myleogram next, anyone able to tell me about that test and how it might help me, can anyone advise me what to do when you just can't find the source of your pain, and why is it happening when my nerves don't seem to be impinged, just looking for some advice or if anyone else has had negative discogram results and what the next steps might be, I have a follow up appointment on the 23rd dec, thanks to anyone who reads my long whiny post, god bless.



  • I am supposed to be cleaning for the arrival of family on Tuesday, but here I sit at the computer! I have had an ongoing situation too since my fusion in Jan. of 2008. I then had a smaller surgery Jan of 2009 that we hoped would take care of the nerve pain. Nothing specific shows up on my MRI either, and I didn't really have disc problems, so never had a discogram....

    There are a couple things I can think of, but they are things your surgeon should/would have noticed. It is possible that too much bone was removed during laminectomy, resulting in some instability that ends up causing the nerve to be pinched. Another possibility is that there is a disc fragment that was missed during surgery and it is still floating around causing meyhem.

    It may be that a fusion might have provided better relief...but, who knows at this point? I don't think you can overlook scar tissue (epidural fibrosis) as a possible source of pain. It is odd that the right side pain would clear up -- is that completely?

    Anyway, it is within the realm of possibility that the scar tissue that filled in around the surgical site continued to grow slightly over and is affecting the descending nerve root that is affecting your left side. These would all be questions to ask your surgeon.

    What I did was I just kept going back to my surgeon. I would make an appointment and go in and tell him I was still in pain and what should we try next. He was organizing the treatments and injections I had with pain management. At one point when he seemed like he was losing interest in my problems, I point blank asked him, or phrased it more like...I know you're a surgeon and since you tell me there is no reason to do more surgery, perhaps You would prefer that I move on...I should go to the pain management doctor and put him in charge of my case." It was not a threat, but stated as an offer -- giving him a chance to get rid of me if he wanted, but letting him know I intended to continue to pursue my hunt for answers.

    One problem is that I really believe that once a surgeon makes up his mind about a diagnosis and decides what surgery the patient needs, sometimes he doesn't budge from that position mentally. He doesn't look at the patient with an open mind. Perhaps there is something else wrong -- OK, let's find it....

    I think you need to keep pushing him or find a new spinal specialist to take a fresh look -- or both! Don't give up. There is no reason to give up hope and accept your situation...keep looking.

    It's taken me over a year and a variety of doctors and alternate medicine practioners to finally figure out what is causing my pain. (at least we think we have done this -- time will tell as I am having more surgery after the new year!)

    You might want to have a positional (standing) MRI to see if there might be something mechanical going on when you are weightbearing as opposed to when you are lying down....you might have to travel somewhere as they are not offered everywhere....

    OK, I think I'm out of ideas for the moment and I need to get back to my holiday cleaning!!

    Take good care,
  • Sorry to hear you are still in pain but a different pain. It seems Gwennie hit the highlights of the possible isssues.

    I never got relief from my discectomy. I had another MRI that actually did show another mass pressing on the nerve - -> so either reherniation or it was another floating mass they couldn't see at time of surgery.

    I agree that you know your body and there is something not right. Did this doctor suggest what next? Sounds like he wants to monitor you a little longer and then determine next steps. I would get a follow up with him after the holidays to have it on the calendar. If he's right and things continue to heal, fantastic. But if not, you have the appt.

    As for the holidays . . .I love how you open your post. Yes, I am trying to enjoy the holidays despite the pain. I am working from home the remainder of the year b/c of my pain and need for another surgery. So that's a bonus. We didn't decorate much but shopping is just about done and looking forward to baking some cookies. I just do things in short spurts and usually early in the day since I feel better in the morning until about 2pm.

    Sounds like you are enjoying the holidays even with your pain. I think it's something many of us back suffering people just do b/c other can't 'see' pain.
    Good luck
  • Thank you both for some great advice and kind, friendly words. This time of year is tough with so much to do. I have a party tonight to go to and my kids are in a christmas parade tomorrow and have soccer etc etc...............never ending!!!

    I just felt so let down to hear my discogram was negative because I was hoping that he found the source of my pain so it could be fixed, now we still don't know why. I feel it has to do with the nerves so maybe the myleogram will show something, but what can be done about that if it is my nerve causing all this pain?

    My appointment for my follow up is December 23rd, he will discuss the next steps at that time, thanks Gwennie, I like what you said about giving him the offer to bow out and if necessary I will go to someone else and a fresh set of eyes if i don't get any better.

    I wish you all a very merry christmas, Gwennie what surgery are you facing next year?

    Take care,
  • I have been in similar situation also, but it was with my second spinal surgery-a fusion. I kept having pain and it wasn't getting any better. One day it went off the charts, like I was struck with a lightening bolt through my lower back and legs and I ended up in the ER. They called my surgeon, treated me with IV morphine and then I went in for an MRI after. It showed that I had scar tissue growing on the nerve root at left L5-S1 and also at L4-5. At this time I knew that I had permanent nerve damage on the right S1 nerve. I had another ESI done but all it did was aggravate my nerve pain and cause horrible muscle spasms.

    I did have a micrdiscectomy/laminectomy prior to my fusion, and I didn't do so well either but the reason was clear- I reherniated L4-5 and the nerve was compressed again and it happened 1 month post op.

    Gwennie is right about looking into the scar tissue a bit more. There is a chance that it could be causing this new pain you have. I also think the ct/myelogram is a great idea because it shows more detail than an MRI. It is more invasive however but most places will sedate you for the procedure. They will inject you with contrast dye and put you on a tilt table and tilt and roll you around so the dye coats the spinal canal well. Then you have the ct scan and afterwards you have to lay flat for an hour so that you don't get a spinal headache. You want nothing to do with those- severe headache, dizziness, projectile vomiting, nausea, hearing impairment, light sensitivity, noise sensitivity, and all you can do is lay flat with your head down. I've been through it 3 times.

    I really hope you find out what is causing your pain and that your doctor will do the best he can to help. If he wants to discharge you, ask if he will refer you to pain mgt because they can try to diagnose your problem there. Take care
  • Thanks for replying and explaining some of the myleogram, I am really hoping if my problem is focused on my nerves and not the disks that this test will show why I have my symptoms.

    My surgeon thought I would have to have a fusion until I my discogram on Thursday was negative. I didn't yell out in pain as much as he thought i would so he said I don't need the fusion afterall.

    Still no answers why I have all my left sided pain, if this next test is negative I am not sure what else can be done, my hope was that the discogram was going to find my answers and it didn't so i feel very disappointed.

    How are you doing now since your fusion? Is it because you re-herniated you needed the fusion? He thought my L5-S1 had collapsed a bit since it is degenerated but it has not re-herniated, a fusion may be needed in the future but atleast not now.

    Perhaps you are right, I will follow up with pain management, do they still do diagnostic tests to find out where the pain is coming from? i don't want to just live on pain meds.

    Thanks for all your help,
  • Yes I did have the fusion because I reherniated L4-5 again and I also had retrolisthesis. Unfortunately the fusion didn't relieve my pain and I actually felt worse after. A year and a half later I had surgery to put a pain pump in to help me function better.

    Anyways, an intergrative pain clinic will try to diagnose your problem as well as provide a variety of treatments. I would stay away from those who only do injections. They do discograms, spinal injections, nerve blocks, etc and also order MRI's, cat scans, ct/myelograms. I never had a discogram before so I don't have any experience with one. I do hope they will find out what is causing the left sided pain and get you feeling better soon. Take care
  • I hate to say it, but maybe you should have another discogram with a different doctor performing it. During my discogram the doctor told me every single thing he was doing, told me which disc was being worked on and asked me to let him know if it recreated my pain each time. They tested 3 levels, with 2 of them being my 'bad discs' and one being a control. Then I got a hand written report from him with all of my results. It definitely was hard to give him accurate responses, since of course it all hurt, but he was very vocal with me about what was going on and what I needed to help him with. I cried my eyes out during it, they had to shove tissues underneath my face on the table because I was crying so hard I was slobbering all over. But once it was over I really don't have much memory of the pain at all.

    After the discogram I decided that I wanted the doctor to be my pain management doctor, since he was so awesome. I hope you can find someone you like just as much.
  • wow, what a great doc you had doing your discogram, my doctor told me nothing!! I had no clue what he was doing and when and how!!! My doc is good I think, but his bedside manner not so much, i am probably a boring case for him, too much mystery, nothing major to operate on!! Hmmm not sure!!!

    Thanks for all the great advice, I will stay on my quest for answers for my left sided pain, like I mentioned a myleogram is my next test, anyone with experience on this test that would like to share with me??

    God bless everyone, happy holidays
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