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Ok, so now what do I do? Frustrated, help please.

jeq1977jjeq1977 Posts: 87
edited 06/11/2012 - 8:28 AM in Back Surgery and Neck Surgery
I'm about to lose my mind. I just need to complain a little bit and get some advice if anyone has any for me.

I had a microdiscectomy (left, L5/S1) at the end of January. I felt great for 3 weeks, but then all my leg (sciatic) pain came back overnight. I was positive I reherniated. At first my neuro thought it was just a flare up and gave me a prednisone pack, but he ordered an MRI with and without contrast to be sure.

I did not reherniate. According to the MRI, there is nothing interfering with the nerve at L5/S1. My neurosurgeon is discouraged. I don't think I have to tell you how that makes me feel. He called the radiologist that read my MRI and they tried to determine if there was enough of a bulge at L4/5 to be causing the pain. Neither of them really thinks so, but they are going to repeat the MRI using a different type of "image slicing" to get another view.

How could L4/5 be causing the same exact symptoms as L5/S1? I thought each level traveled to different areas? The bulge has been at L4/5 since before surgery, and didn't seem to affect me at all. The surgery at L5/S1 completely took the pain away. If the repeat MRI still shows that L4/5 is not causing my pain, what are the other possibilities?

I'm stuck at home, mostly in bed. I've been out of work since the surgery, almost 6 weeks ago. If I try to walk I start limping within just a few minutes. Yesterday I actually fell to the floor because my left leg suddenly gave out on me with no warning. I'm frustrated beyond belief, and very angry at my body for turning on me like this.

Has anyone been through this "mystery" pain? I actually asked the dr if it could just be in my head, the whole "perception of pain" thing. He said absolutely not, its not in my head. That made me feel a bit better, but if its not in my head, and not in my back, where is it???

Any input would be much appreciated. Thanks.


  • I did, about 3 months back I think? I had a pretty bad flare up, got the MRI with and without contrast. No herniation and no scar tissue. About a week later I was fine again. Doc said that is going to happen and it doesn't help that I have DDD in 3 discs down there. He said in the future I will need more surgeries :(
  • I've been through and am still going through what you call "mystery" pain. I had L5/S1 ALIF 7/1/08 and was feeling ok for about 2 months. Then sometime in Sept 08, my legs started getting that pins and needles feeling and would get numb. I also have my leg give out on me while I am walking once in a while. The pain I had in my back prior to surgery is back and at times worse as well as sciatic pain which goes down butt and back of leg all the way down to foot. I've had CTScan, xrays, EMG, SI joint injection since surgery and tests come back "normal" and injection was not successful. I am now waiting for a new patient visit to see a neurosurgeon for another opinion on March 24. It's so frustrating when all your tests come back and there is nothing showing up to validate your pain.

    My advice to you is to not give up on finding answers to your pain or atleast pain management that will make the pain bearable or manageable.
  • You might want to ask your neurosurgeon about having a standing MRI. Sometimes it will show something when the discs are weighted as opposed to when you are lying down. This is not done commonly and many areas do not even have a facility that does them, but it might be worth asking about.
  • It's hard for the doctor to know for sure without doing an MRI of course and it's frustrating after just coming out of surgery. The same thing happened to me after my microdiscectomy and I wound up reherniating at 4 weeks. Sometimes regular pain flares can feel like something like that happened, so it's important to always notify your surgeon. Gwennie made an excellent suggestion-when you have a standing MRI the disc problem is seen much better because nerve compression are sometimes more pronounced while standing rather than laying down. A ct/myelogram is great for finding problems the MRI can't and it used to be the gold standard for diagnosing disc herniations.
  • I've also had at least one person mention on here to request a standing EMG rather than lying down. I wish I had known about that prior to my MRI's or EMG's. It makes a lot of sense though.

    I will be going to new neurosurgeon with a lot more knowledge than I had when I went with the ortho.
  • I'll have to suggest that at my next appointment if I am not seeing ANY progress like I feel I haven't had so far.

    I didn't know they did that either. Thanks. That's why I love this site. We become VERY educated and some doctors probably don't like that. Oh well,....
  • Standing MRIs are not that common. Many large cities do not even have a facility that offers them. I'm not sure why because it seems to make such logical sense!
  • That makes so much sense! I've never heard of standing MRIs. They must not be common around here, but I'll ask about it if my 3rd doesn't show anything. I'll get my results on Monday.

    My surgeon wants me to have standing & flexing xrays done before I see him. Does anyone know what he is looking for? What would an xray show that the MRIs wouldn't?

    Thanks everyone, it really helps to know that I'm not alone. :)
  • Standing shows what your bones are doing under weight and pressure, same for flexing. They are looking for things to go out of alignment under pressure.

    You can't get that in most MRIs. Not enough room and even if you can do the flex it would be darn near impossible to hold that position!

    All of my spine, neck and shoulder/clavicle xrays were done standing and or flexing.
  • I don't see a discogram being mentioned anywhere.
    Was one done?

    Also, neurography is now available.
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • They never mentioned a discogram, and I didn't request one. I've heard that they are really painful, and I didn't want one. Isn't that the one where they try to cause pain by doing something to each disc?

    At the time, all my symptoms matched a significant herniation of L5/S1, which was confirmed by the first mri. And when the surgeon got in there it was even worse than it looked on the mri, so he took a lot of "stuff" out. When I woke up I had immediate relief, which seemed to further confirm that L5/S1 was definitely causing my pain. But then 3 weeks later...

    I'm not familiar with neurography, what is it?
  • I was scared of the discogram as well. And, it was no picnic - but, we were able to exactly duplicate my pain and locate the disc that was causing it.

    If not for the discogram my dr. would have worked on only one disc - the one that looked the worst. The discogram proved that the second disc was the one creating the most pain, even though it looked deceptively better.

    You can ask for a full dose of valium for the discogram - I did. Also, despite how rough it was to go through, by the evening I was fine. By the next day (which I took off work, expecting to be flat out) I was up and shopping and having a great day with just a bit of stiffness.
  • They are not as bad as everyone makes them out to be. I have had two, and they will give you a sedative, so that you dont even really remember it. I was only going to have 1 level fusion and discectomey and after the 2nd discogram, my surgeon found I needed two done. The one he thought was worse wasnt the one that was the most painful. Dont be afraid. They dont lay you up for days. I had some pain for a few days, but nothing alot more than normal. I am glad I had the second one or I would have been insurgery again right away.
  • Well, it sounds like I should have had a discogram, but my doctor never said anything about it and so it wasn't ordered. I'll have to ask about it at my next neuro visit.
    I'm certainly willing to do almost anything at this point if it will get me some answers. Oh, this is all just so frustrating. And I feel so guilty complaining when there are so many people here in much worse shape than I am...
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