This is LONG, If you want to just skip to the question, go to the last two paragraphs and just keep in mind that I believe I understand the discogam.)
Today I had a discogram and I had high hopes that this would reproduce my pain and I would finally have a diagnosis for my chronic lower back, hip and groin pain which has been going on for almost three years now. It didn’t reproduce my pain that I could tell, but I am not so sure about what did or didn’t happen and am looking for feedback.
A summary of my situation: woke up one morning 3 yrs ago in pain w/ no apparent cause and has slowly worsened over time. To this day I have no diagnosis that accounts for the pain I complain of (that is how the doctors politely say it). My x-rays do show I have mild DDD, but nothing to account for the level of pain I experience. I have been to several docs & specialists. I have had X-Rays, a MRI, a CatScan, ultra-sounds (to check out kidneys and ovaries which are fine). I have tried Chiro, Accu, PT, 2 facet injections, and now this discogram. I would stand on my head if I thought it would help me. (A diagnosis is very important to me, so I can either fix it or accept whatever it is). My X-Rays, MRI and Cat Scan were done over a year ago and are all ‘clean’. None of the therapies helped at all. I have still managed to find a PM who will treat me and I take topamax and vicodin for pain - both help but I wish I didn't have to take them and my quality of life stinks compared to before.
For the last two years I have been convinced that my pain is from a problem with a disc despite my clean MRI because it is the only thing I can find that seems to fit my symptoms closely. I guess this is hard for me to explain, but I just feel there is a problem with a disc and it irritates a nerve and in turn creates almost constant pain. I think nerves are involved because the topamax helps.
Last month when I was in to see my PM I had aniticipated that we were going to discuss plans for an epidural based on discussion during a previous appt – but during this appt which was only the third with this doctor there was something about what I described about my pain that for some reason it got his attention and he said he suspected that I had Internal Disc Disruption w/discogenic pain. I already knew what discogenic pain as I think I have it. But the IDD I never heard of, he explained it to me and I later studied up on it and learned how the disc can be torn or ruptured inside, cause similar symptoms to a typical herniated disc but doesn’t show on a MRI. I was so sure this was my problem, after reading, my symtoms seem to match almost too perfectly.
During this apptmy PM (he is anesthesiologist) explained the discogram to me and pointed out that even if it did diagnosis me with IDD that my insurance did not cover the surgery to correct the problem (not sure what the surgery is even), but I immediately said I wanted to do it, figuring that if this is what is causing the problem I want to know cause then I can stop going to doctors, trying therapies that don’t work and wasting time and money and wondering what is wrong with me! I was also very aware that discograms are invasive and there is a risk and it is often strongly recommended you only do them in preparation for surgery – still I wanted this.
I think I was fully informed about how the discogram works. The doctor inserts needles into several disc spaces where some discs are good and one or more are the suspect bad ones. In order to get a postive diagnosis of IDD, two things are required when a disc is injected: first the doctor has to see a problem with the disc and secondly the patient has to tell the doctor that their pain has been reproduced when the disc is filled with the contrast fluid. Apparently you can have bad discs that cause no pain and that is why the patient has to do their part. I state this, so readers understand how I think a discogram works so they can correct me if I got it wrong.
So, I went today, signed the papers and I wasn’t nervous (this was so similar to the injections and I knew I would get the relaxation drugs.)
The procedure started and the needles where put into place. I was having three levels done and I had no clue beforehand whether all the needles would be in place first and then contrast put into each one, or if I was going to get a needle and contrast and then another needle and contrast, or which disc would be first or even which disc might be my problem maker – and all that is just as well, no need to be trying to second guess the test.
So I got in the room and was feeling all floaty and wonderful, but I pretty much knew what was going on, and laid on my stomach on the procedure table. There were 2 nurses in the room along with the doctor.
The first part of the discogram reminded me of when I got the injections, they talked me through parts, you will feel something cold (sterilizing my back), you will feel something pinch now (and it would really hurt for a couple of seconds, shot or needle going in) and that went on for a while. All of the work was being done on the opposite side of my back where my pain is and this is how the doctor explained it would be done as he wanted to go in from the side that was not causing the problem. I also now know they were placing all the needles into location at this time, so all the discs they wanted to test would be ready to be injected with the contrast material – at the time though I didn’t have a clue as to whether they had already injected some good discs or even bad ones or not.) During this time, I also remember tightening up a few times as needles went in, and one of the nurses there is really nice and whenever they stick the needle in and I cringe she always grabs my hand and lets me squeeze it (and she was holding my hand today as well).
So now I have the needles in me, I am awake but lightly sedated and as a result not worried about much of anything. I am listening to what they are telling me. I do remember them having to ask me to keep my head down once (I was moving around I guess.)
The next thing I remember was I think being asked, ‘Do you feel that?’ and at the very same time I was hit with a huge wave of pain in my lower back but on the opposite side that I normally have pain and I cried out "Yes! But that is not my normal pain – it is different!" And the pain was very bad and very intense as I was told a discogram can be. I started to cry, but not sob, tears gushed out of my eyes and I think I was moaning. I remember hearing ‘fentanyl’ and knew it was put in my IV and I am pretty sure I got another one as I remember the nurse saying yes, do it again or something. After the fentanyl’ I think (not sure) they asked if the pain was better and I t was a bit more tolerable. Because I cried, my nose stuffed up completely and I couldn't breath as my mouth was flat into the sheets on the table. The helped carefully move me so I could breathe though my mouth. I remember asking for kleenex – not sure if I got it but they told me I couldn’t blow my nose because of the needles being in, which made sense.
Now, even in my drugged state I knew that one of my disc spaces had been injected and that disc was not the one causing me a problem as it didn't replicate my normal pain, but the pain it created was still there and still bad and occupying most of my attention. I don't know how much tmie went by as I was drugged, but it seems like hardly none at all and I was asked again, ‘Do you feel that?’ and I felt a deep but subtle pain somewhere in the area of where ‘my pain’ is, but it wasn’t anything compared to the pain I was still feeling on the other side of my body and I had no radiating to my hip, groin or butt. So I said I felt it but it wasn't my pain and it certainly didn't hurt like the other side of my body. And then what seemed like 10 seconds later they asked again me the same questiona and I felt the same thing again - in my spot but very subtle and I answered the same way - not my normal pain. Then the needles were removed and I heard the doctor say ‘Negative’ and he left.
I didn’t get to see the doctor afterwards but am assuming at my next appointment I will get more information. It is clear to me that the test results are negative, still nothing accounting for my pain according to this test. Now that the drugs have worn off, I am now experiencing very increased pain in my normal area and no pain at all in the side of my back that had so much trouble during the procedure.
So finally, to my question: If they gave me one and probably two (and who knows maybe more) doses of fentanyl just before injecting the discs that might be causing my pain could that have made me not really feel my normal pain? And what if you combine that with the fact that I was still in a lot of pain on from the previous disc being tested. (All I can remember when they were testing the last 2 discs was how much my back hurt on the other side, that what they were doing now was like a pin *****.) And isn’t there a theory that only one part of the body can feel pain at a time? Then finally, the fact that ‘my pain’ is now greatly increased after the procedure even when the needles came in through the other side which rules out that it is not pain from the injection side, also makes me still question whether my discs have a problem or not.
I would really like to know what people think. I am worried that I want this to be a disc problem so badly (becuase I want a diagnosis so badly) so I am trying to find fault in the discogram and maybe all of this normal and that if my discs were causing my pain, this discogram would have found them even under the circumstances that happened. I will talk to my doctor - but should I accept these test results and conclude there is not a disc problem?
I understand that you want a diagnosis, but why wish for a disc problem? I have 4 levels of disc problems among other things and believe me, you are better off wishing for something else!
Now, your complaints do indeed sound like they are sciatica-related. But it could be ude to other things pressing the nerves. You have a small sac in your back called the thecal sac that contains a whole network of nerves (my thecal sac is damaged due to impingement from a disc herniation).
If all your tests continue to comeback clean, and you continue to have the same pain, it is going to be difficult for you. Don't give up, though.
Let me ask you, besides the sciatica type pain, do you have any weakness in your legs?
Originally, i had been dx'ed with Irritable Bowel because a lot of my pain was in hip and groin area along with butt and back. A sharp Doctor noticed that I had severe left leg weakness when he tried to push my leg down. That led to my MRI and my diagnosis.
Thank you WolfM - I don't have weakness in my legs that I am aware of (sometimes my thigh aches but I never have pain that radiates all the way down my leg and no tingling or numbness), but when I went to physical therapy they continued to notice that no matter how much work I did that my right leg and side of my back were much weaker than the left and the right side is where the problem is. This seem to puzzle my physical therapist, but why I don't know - the fact that 12 weeks of physical therapy (and me doing the exercises in between sessions failthfully) didn't help me at all seem to puzzle my physical therapist too.
I guess I wished for the disc diagnosis because my symptoms are the closest to those and I really want a diagnosis so that if there is treatment that I can get the right treatment or learn to live with it and STOP going to doctors and doing treatments that won't help. Right now I have been doing things that are no better than taking stabs in the dark. I am desperate.
The Following User Says Thank You to DogMom22 For This Useful Post: happycamper8979 (06-06-2011)