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Has anyone else who has had a spinal fusion had this kind of problem so late after the fusion.

FROGFFROG USPosts: 396
edited 06/11/2012 - 8:37 AM in Back Surgery and Neck Surgery
I would like to say I am a new member here but I have been lurking around for quite some time. Reading many post and articles. I find myself finally getting up the nerve to post.
I have been dealing with back pain for many years. I had a discectomy in 2003 and a laminectomy/fusion at L4-L5 in Jan of 08. After the fusion I complained about severe pain on the left side of my back over and over again. My surgeon said it was the muscles recovering and it was nothing to worry about. During the fusion he did find a lot of scar tissue from the previous surgery and nerves that were "crusted" down from the previous surgery that had to be freed up. I suffered a lot of nerve pain from that and the hopes were that the nerves would rejuvenate and the damage was not permanent. I eventually went back to work and dealt with the pain. Some days were better than others but I found myself just living and resting so I could go to work each day. My CT scan a year after the surgery showed extreme amounts of scar tissue and edema but I was fully fused. Still I was in constant pain.
Several months ago the pain became more than I could tolerate or control. I had an incident were I could not bare weight at all on my right leg and severe pain in my hip and groin. This pain was different than any I had ever experienced. My primary physician referred me to a different doctor thinking I was having hip problems. This doctor reviewed all my previous MRI's CT scans etc. and felt it wasn't hip pain but that I was having problems in the level below the fusion. Woo Hoo! Just what I wanted to hear. Things have gone from bad to worse. The Radiculopathy (sp?) has gotten out of control. It has gone from just being down the outside of the right leg where it was originally after the surgery to throughout the leg, hips, groin, feet, and into the left leg. I can't tolerate standing or sitting for any length of time, the pain in my back? Aggggh.... He has performed 2 MRI's and both show a slight herniation at the L5-S1 level but nothing significant. He is now requesting blood work suspecting some kind of bone infection in the spine. Each time he orders another test you wait a week to get it done and another for the results. I feel like my life is a series of "Hurry up and Wait."
Has anyone else who has had a spinal fusion had this kind of problem so late after the fusion. Maybe it's just a gut feeling but I somehow feel like either the scar tissue has taken over my back or the hardware is being rejected. But wouldn't I have know that long before now? It seems like with each passing day the pain gets worse and worse and I am slowly but surely losing the use of my legs. I have gone from pain to painful numbness and tingling and occasionally the legs will just turn to jelly and become useless.
This post has already been dreadfully long so I won't even get into all the drugs, Steroid injections, periods of rest, and PT I have tried.
Thanks for reading I know It's a long one.
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1345

Comments

  • I'm glad you finally decided to post. We are a friendly bunch so don't be afraid to post often with all comments and questions.

    I just finished writing a post to Laur en Pain whose thread is entitled "healing time for lumbar fusion..." {lease look for my reply there as at least part of it would apply to your situation, too.

    It is difficult to know when you go from "original pain" from surgery to continuing pain to new pain, etc. I too had lumbar fusion at L4-5 in Jan. 2008. Did your doctor ever X-ray after surgery to be sure the hardware was in place and tight, etc? Did he do anything pro-active after surgery or were you just told this was part of the healing, etc? They could inject a numbing agent in the area where the screws are located and do a block to see if the screws are causing the pain...if the bloodwork doesn't show anything.

    If I had to guess, since you already had problems with scar tissue, that would get my vote as a probable cause for your continuing pain. Did you have BMP with your fusion? If so, it is possible that it has overgrown the area, possibly going into the nerve. Several people on the board had a similar situation and it resulted in a huge amount of pain. Even if it isn't BMP, it could be scar tissue that is growing around a nerve, causing compression. This creates the same feelings of sciatic-type pain that you may have had prior to surgery.

    I don't think it would be that the scar tissue is continuing to grow, but that the nerve continues to be irritated. It never settles down, but is getting worse as the pain becomes chronic. When a nerve continues to be compressed and irritated, the nerve itself can become scarred.

    Have you been going to a pain management specialist? Also, the new doctor sounds like he's trying to figure out the source of your pain. Have you consulted with another fellowship-trained spinal specialist for a second opinion? You may have to be a bit more aggressive in trying to get to the bottom of the reasons for your pain.

    I know it is annoying to have to take the lead in this sort of a problem. I found it necessary and you may need to, also.

    Best of luck--

    Gwennie
  • Thanks Gwennie,
    Thanks for listening to me ramble.
    Yes, my surgeon did several x-rays througout the post op process and never mentioned seeing a problem with the hardware. As far as BMP I must admit I honestly do not know if it was used but it is now something I will need to look into. As I stated, I am currently using a different doctor. Up to this point I have hesitated using my surgeon because although I thought he was a very good surgeon I wasn't particularly crazy about the after surgery care and how things were handled after surgery. (Forever to return phone calls, paperwork etc. from his office.) I really felt like after the surgery he was pretty much done with me. Most of my complaints were treated as just part of the healing process.
    I have had several steroid epideral injections with no relief. I hesitate to do more because I am also on HRT after a hysterectomy and those steroids really mess with your hormones. (Don't need that added stress.) On one of the MRI's I recently had done my doctor spotted what he thought was some bone growth in the spinal canal itself but the radiologist believes that the nerves are not compressed. The MRI's are showing inflammation so he is pursuing the infection theory. He is committed to finding the source of why everything is going so wrong so fast but seems to be taking forever. As you say it may be time to get more aggressive and make things start moving a bit quicker. I'm not a good candidate for drugs. Never have been. Very hyper sensitive to all drugs and their side effects. That makes things much more difficult. Can't take any of the usual suspects for nerve pain. ie. cymbalta, neurotin, etc. I've tried them all!

    I appreciate all the insight anyone can give me and will use all this to start making a list of questions for my next appointment. I have an Indium scan scheduled next week. He says that will tell him if there is infection/inflammation in the spine or around the hardware. I will need a plan if that comes back negative.

    Thanks,
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  • If there is bone growth in the spinal canal, that could be overgrowth from BMP (if it was used.)...just something to keep in the back of your mind if nothing else seems obvious.

    Hopefully others will have some ideas for you.

    Gwennie
  • I thought of a couple more things. You might want to request a copy of the surgical notes from the hospital where you had surgery. There is a tiny chance that it might reveal a clue.

    You might want to get another opinion from a fellowship-trained spinal specialist, either an orthopedic spinal surgeon, or a neurosurgeon who devotes his practice to issues of the neck and back. You do not want a ortho who is a generalist or in sports medicine.

    Seems like there was something else I wanted to mention, but it has escaped me for now.

    We're going away tomorrow and I am trying to figure out what to wear, where to find my winter clothes, washing, etc. Ugh. I can't keep as many balls in the air as I used to!!

    G.
  • Welcome here, sorry you had to be here, but glad you found us.

    I think Gwennie has given you some really good advice-get a copy of your op report and make sure you are seeing a board certified ortho spine surgeon.

    I have so many things to say, but will try to keep it short! Know that I am not a doctor, that what I post is from my own experience and research.

    I'm a BMP gone bad fusion. Had to have it removed by another surgeon. It is very difficult to see boney overgrowth due to the hardware creating artifact on the MRI's and CT scans. If you have bone growing in the spinal canal, it may not even be from BMP, it may be regular old spinal stenosis. I also had hardware that was too big, loose, and infected. I wish I would have made a different choice in my first surgeon, but I can't go back and change that, only my future care and try to help someone else.

    If I were in your shoes, there's a couple of things I would want. Read your op report to see if BMP was used.

    Find out exactly which nerves are your pain generators-I had to have selective nerve root sleeve injections. If 100% of the pain in that dermatone goes away(dermatone is the area of the leg/body that that particular nerve is responsible for), than that means that level is compressed or damaged. No steroids as many believe steroids inflame nerves when injected into this area. Sorry, the pain relief is only about 30 minutes! :) For a good dermatone map, go to www.chirogeek.com and click on dermatone.

    Films are just garbage when you have hardware, just another hoop to jump through. Yeah, films may show some loose hardware or trouble at another level, but they really are limited because of the hardware artifact. My MRI's before surgery didn't show the full extent of my disc issues, either, only the discogram lit it all up. Not saying that you need a discogram, though. I believe that direct visualization(surgery) is the best and sometimes only way for those of us with previous surgeries to find out what's going on.

    What do you need that hardware for? If you are fused, it is pointless. If the doc goes in to remove it, it might remove some of the pain and let him see what else is going on.

    Just my personal opinion and experience from my 10 surgeries. You seem like you've just dealt with this for so long, tried the conservative routes of steroids and PT and time. If it were me, I'd be going for action. Hardware removal may be a start for you to get eyes on what is going on.
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  • The doctor has ruled out any infections and just about everything else. He referred me back to my original surgeon and another one as well to consider Hardware removal. Was able to see my original surgeon. He didn't even entertain the idea that it could be hardware related. He ordered Facet Joint injections (which I did and obtained about 45 min relief in the back only.) and a nerve test. I have been through every test it seems imaginable and no one is finding anything. Just had the EMG NCV. It came back normal(with the exception of the original nerve damage that was present from when I had my fusion). Of course someone needs to tell that to the pains in my hip, groin, back, and down the Right leg. The doctor who performed the nerve test seemed to imply I was just "out of shape." (I'm not a marathon runner but am not out of shape or more than 5lbs overweight.) I'm at a loss. I keep seeing doctors and having test done. Anatomically, no one is finding anything wrong and yet I continue to suffer. I've had a doctor tell me I'm out of shape and a radiologist recommend I have my gall bladder removed. (I already did that 10 years ago.) I can't work and can only distract myself from the pain so much. Any insight into what else I should be asking these doctors would be most appreciated. I have an appointment for a 2nd opinion with another Ortho Surgeon next week.
  • This is a quote from my doctor referring to an EMG/NCV: "These tests may help your doctor determine if your problem is due to a nerve abnormality. They must, however, be viewed in association with imaging studies such as an MRI and a complete physical examination. A compressed nerve root in the neck or back may be a source of pain but these tests could still be normal. These tests are also normal when the problem is due to a spinal cord abnormality."

    Why did the facet joint injections help? It would seem to me if the marcaine/lidocaine/whatever used helped for as long as the numbing agent lasted, then that would indicate a problem not just "out of shape." Problem I see is can the doc guarantee that the numbing agent ONLY went to the facet joints and not also to other areas? Like hardware blocks-you cannot guarantee that the numbing agent stays where the hardware is, it absorbs all of the place because it is not a confined area. I don't know the answer to my facet joint injection question, but just pose it as a possibility.

    What about CT myelogram? Did you get BMP and could it have caused bone overgrowth not showing up because of the hardware? What about selective nerve root sleeve injections? What about hardware removal?

    Please post an update after you see the next guy and good luck!

    Just my personal thoughts again.

  • Not sure if this is a good time for me to be trying to post. I am soooo...exasperated.(sp?) Is that a word?
    Anyway! My Original surgeon called me back yesterday! As I expected he would say, Nerve test came back normal. Follow through with the Facet Joint Injections. It “may” help the back. Although, he has no explanation for the back and leg pain. I am not a surgical candidate. He doesn’t see anything wrong. It is possibly just referred pain in the legs. If it doesn’t get better go back and see my referring doctor. “Feel Better.” Those were his final words.

    I then went and saw a second Orthopedic Surgeon today. (Works out of different hospital.) He reviewed recent MRI, and my CT scan from surgery. Did xrays, physical exam etc. Long story short,(Or is this a short story becoming oh so long?) follow through with the facet joint injections it “may” help the back but he too has no explanation for the back and leg pain. Doesn’t see anything structually wrong in any of the images! I am not a surgical candidate. Work on trying to walk more swim etc. Neurologically maybe the brain is getting the wrong messages in regards to the pain. blah blah blah...
    The MRI I had done wasn't done with contrast. When I asked about that as well as scar tissue and hardware he felt there was no need to redo it or any other testing for that matter, including a hardware block. He did not see any bone over growth from the surgery or any signs of nerves being compressed. In his opinion original surgeon did a beautiful job on the surgery. Everything is in place and looks good.

    Ok! So, I just have this horrendous pain in my back, groin, hip and leg because my brain is getting the wrong signals? I cannot work, nor stand, or sit for any length of time and my quality of life has gone to...
    I may not be a surgical candidate but I am, however, a candidate for the funny farm and soon. What else is a person supposed to do if the doctors can't find anything? I understand that no one is going to do surgery if they can’t find something to do surgery on. It’s not like I want surgery. I just don’t understand how they can totally dismiss all my symptoms because they don’t see something on an image...If it sounds like I am being overly sarcastic it's because it’s either that or cry. Right now I can’t decide which one I want to do. Oh, I am rambling aren't I? Thanks for listening!
  • I totally understand your frustration. How long has it been since you had the fusion? It can up to a year to heal, and the nerves themselves can take 18 months to 2 years.

    Like you, I kept having pain after my fusion on L4-S1 and I was being treated by my surgeon and pain specialist. It wore on despite increasing my meds, PT, and taking prednisone on and off. It got so bad that I was sent in for another MRI which showed scar tissue growing on the nerve roots.

    I also was told my nerve damage was permanent but this stemmed from a prior spine surgery. I already knew about the severe DDD in both those levels and all the facet arthritis found during surgery. We tried an ESI but it only made things worse and then after my surgeon said it was out of the question trying to get rid of the scar tissue since it grows back, maybe worse. One day I was checking out from an appt and I saw Post Laminectomy Syndrome (failed back surgery syndrome) checked off as one of my diagnosis. I guess it's an umbrella term for people who've had spine surgery but never improved. I've read this happens to 40% of patients.

    I wish I could tell you exactly what's going on with you. It may take more visits to other doctors, more testing, or more waiting. I would try to get a referral to a pain clinic if I were you because they can help you in finding out what's wrong and can treat your pain in different ways. But whatever happens, don't give up. Sometimes it takes years to reach a diagnosis. If you can get to the Mayo Clinic or the Cleveland Clinic, give it a try. It's worth the effort. Take care :H
  • I too am going through the same thing right now. I had a l4-l5 fusion 2 months ago and just spoke to my dr. About left side pain at the hips groin and leg . I'm having an MRI to see how things are going. He really didn't have an explanation either just that some people don't do well with these major surgerys and he did mention about the pain can be associated with the mind which made me a little mad because as I sat in his office i could feel sharp groin and leg pain. If they don't find anything on my MRI then he can't operate or fix anything so then I will just go to pain management. I'm early in my post op but I wonder if I will be in the same boat as you in a year trying to get answers for the pain. Best of luck -Jen-
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