Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

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

FROGFFROG Posts: 393
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.


  • 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--

  • 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.

  • 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.

  • 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!!

  • 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.
  • 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-
  • Jen,
    Hopefully your MRI will offer something explaining your hip, groin, and leg pain. That is not typical of the L4-L5 area. I am quickly learning how frustrating it is trying to get answers when your images don't offer an explanation...Could it possibly be pain from limping or favoring one side for so long before/after your surgery?
    I love that, "pain being associated with the mind" I've heard that myself several times in the last few weeks. Makes you want to scream doesn't it. Then you go home and start second guessing yourself.

    I don't necessarily believe there is anything wrong with my fusion at all. I am fully fused! I really feel like the surgeons I seen were so busy trying to defend the fusion that they weren't bothering to try and find the source of my current symptoms. There is, after all, more than just that one level in my back.
    Hang in there yourself. I hope you get answers for your pain. You said you were only 2 months post fusion. I hope you have a very successful fusion and everything heals well.

    Take Care and think positive.
  • Meydey,
    Thanks for your encouraging post! I'm not usually so negative. I knew I should have waited to post! It has been 21 months since my fusion. I do have known permanent nerve damage at L4-L5 from previous surgery but they do not feel it is "causing my current symptoms." Removing the scar tissue is out of the question but they don't believe it is "causing my current symptoms." It's just so frustrating when they say, "I don't have an explanation for your pain. Feel Better." And then they are done. As if we aren't stressed enough trying to figure out how to get things done in our home, fighting with disability company's if we are blessed enough to have one, and employers etc.

    I'm done having my little pity party. (for now)
    I need to and will get motivated to start the whole process with more doctors all over again...
    Thanks and take care.
  • Still playing the "hurry up and wait game." Two surgeons have said I am not a surgical candidate. 2 sets of Facet Joint Injections and they ruled me out for the Rhizeotomy. (sp?) My most recent examination from my physiatrist showed deterioating relexes now in the left leg. (Ah, I could have told him that. My left leg has now started with some of the same symptoms as the right.) According to him, all my symptoms reflect problems with the levels above and below my fusion. He is finally ordering a Ct mylegram since the MRI is obviously not showing him what is going on. He wants me to wait until after Christmas though. (He says they can sometimes make you worse for a period of time.) Yippee!
    He also mentioned just finding a surgeon that will just do an exploratory. Originally I was against that. Not so much anymore. It is obvious I need some help here before all this nerve damage becomes permanent. Do I keep waiting for him and each of these long steps or...I wonder if I should just start going surgeon to surgeon until someone listens to me.
  • Hello,
    I had a PLIF and laminectomy L4 L5 & S1 in Feb. 08. Although it didnt rid my "foot" pain, it did help in the sciatica and being able to stand up straight. A few months after the surgery, I started getting this horrible pain left side of the incision. Sometimes it was bad that I couldnt move. I would lay on ice for a half hour and would get better. I had xrays and a really really good physican's ass't noticed that I have now developed arthritis in the sacroilliac joint. The pain sometimes can be unbearable but if I take it easy, its fine. I am now on SSD. Hope this information helps. Take care AND take it easy!!
  • Okay! Thanks Ann. The sacroilliac joint is one area no doctor has mentioned to me yet. I do know that the weather has a huge affect on me! I appreciate the input! We will see what the CT mylegram says. I just had another set of spinal xrays today.
    I love this forum. You get so much good stuff. Then you have to figure out how to tactfully ask your questions so you don't get thrown out of the doctors office. LOL! Seriously, You guys are all great!

    Merry Christmas to you all or Happy Holidays!
  • I might have missed this - but have you had a discogram done?

    Also - google image 'Dermatome Maps' and see if you can determine what level corresponds with your pain - particularly since you mention that the dr. keeps focusing on the fusion and ignoring the fact that you have more than one level in your back!
  • No discogram done. I am scheduled for a CT Mylegram Jan 5th. I am hopeful it will show something that the hardware was hiding in the MRI. I did take a look at the Dermatome Maps and I am sure I am having problems with the level above and below the fusion. I am sure the L5-S1 is the worse of the two. Nervous about the mylegram but glad to be getting it done. I'll be even happier when it's behind me. At least I finally feel like we are going to do something productive.

  • I had a two level PLIF last dec and had my hardware removed in Sept. I had alot of problems and am still in alot of pain. My ortho had me do a cat scan today and mon I have a MRI. Then on the 5th I will go back and see him with scans in hand. He says something is still wrong and he wants to find it. I had a tear in the disc above the l-4, and it wasnt bad enough to do with the other two. In fact he told me he wouldnt have done it because it wasnt bad enough for the risk of problems with another level being fused. So I am hoping that is not the problem, but the tests will tell. I understand how you are feeling. Its tough after a year, not feeling any better than when you went in. I have had 9 surgeries in the past 2 years. Not all back, but it has been an ordeal, I just hope I dont have to go through another fusion, i dont know if i can deal with it. Good luck and I will be checking on you to see how you come out with your appt. Keep me in touch with how you are doing. Love Robin
  • Here I am, still diligently searching for answers into this pain. Of course countless test, procedures and consultations later and I am no further than where I was before it all started. Sounds like a familiar tune doesn't it?

    I went to see my doctor following my Ct Myelogram. He said the report really didn't reveal much other than a small bulge at the L3 level that would explain my worsening reflexes and hip and thigh pain. (He did request a copy of the images to view them for himself and said he would call me if he saw something different.)

    We then went on to talk about pain management and make changes to the meds. Once we have the pain under control we should start PT again. He also very kindly stated I just may very well be one of those small percentages of patients that have these big surgeries and are left with horrible pain. (A very tactful FBSS chat.)

    I went home and obtained the report from the myelogram myself and of course I'm no doctor but I read more than a small bulge on this report. At the risk of boring you silly, I’m sure no one wants to try and interpret this thing, I'll just give you a few highlights:

    T11-12 Mild posterior disc bulging and spurring without spinal canal stenosis or impingement
    L3-L4 Circumferential disc bulging eccentric posterolaterally to the left.
    L4-L5 Post surgical changes...marginal bony spurring, disc space narrowing and facet joint disease resulting in mild to moderate bilateral neroforaminal narrowing more on the right than the left.
    L5-S1 Small left posterior paracentral focal disc protrusion that abuts but does not compress the adjacent thecal sac.

    But evidently it is nothing significant and not the source of my pain...

    So, I had L4-L5 fused and the other levels are slowly failing. Maybe the nerves aren’t impinged when I am laying flat getting all these images done but sitting and standing for any length of time? Wowsers!

    I have begged my husband to get the knife and the screwdriver and just take this hardware OUT! So far he isn’t going for it. (Maybe he would feel better qualified if he stayed at a Holiday Inn for a few days.)

    Now What?
    If you made it this far,
    Thanks for letting me Ramble.
  • just came across this very interesting thread. I had multi level hybrid ADR L3/L4, L4/L5 plus ALIF L5/S1 in April 2008. Never really recovered and after more tests had a revision fusion L5/S1 with hardware plus complete SIJ fusion in April 2009. And I'm still in lots of pain despite Oxycontin/Oxynorm and don't know what to do. My surgeon says he doesn't know why I'm in pain and I'm off to see Pain Management Clinic next week. But I don't want pain to have to manage and see this as being defeatist. Anyone know if ADR can cause problems/pain with facet joints? Pain is overwhelming and constantly nagging, getting worse as the day goes on. Also getting sharp bolts of lightening type pain low back and sharp pains in my left foot. Considering getting a second opinion as no one can tell me if this is "normal" and to be expected or not. Feels like something is wrong but pain is dragging everything out of me.
    Maybe we are in pain because it just takes this long to heal - but no one says that.
    Brian London UK
  • I have had L4/5 fused with cages only in July 08, kept having increased pain...got the same run-around that you have...seems these surgeons go to school to learn the standard things to say. I finally demanded more attention, got another CT/Myelogram done in November that showed one of the cages had moved out of the disc space and my L3/4 was jutted out over the L4/5. In Dec 08, I had hardware put in to stabilize L3/4/5. That helped tremendously. If I overdo bending or standing or walking or sitting (which I guess is just about everything except sleeping and that even hurts if I stay in bed too long), I get aching right in the middle of my back just above my bottom. I am convinced I have scar tissue as one time I bent over early in the morning and felt a tear feeling that burned and sometimes I have burning pain anyway to one side.

    The surgeon's nurse at that time told me that the patients with arthritis and DDD normally get scar tissue within the first 3 years after these surgeries. Even if your nerve roots aren't compressed, there are probably many other smaller nerves that are. Seems no one cares about these branches off the main roots and there's not a great way to see these anyway. The myelogram is about the only test they have to see the nerves and their branches in the cord. Since you've had that and have your report showing all the bulges, you know you have real problems and they are not in your head. Too, yes, standing or sitting would make those worse than laying down for the CT scanner...so you know what you read is probably worse than noted.

    I recently had cervical fusions done and got my op notes from the hospital for both surgeries. I found out that my C4/5 disc was boggy, had to look that up on google, but it means soft squishy. They sent it for a culture but it showed it was not infected. From my MRI, that area showed as herniated, but not to where it was just that soft, which proved that with certain movements why I was having sharper pain in my neck.

    The only thing I really have to offer in advice (other than rambling along) would be to ask one of your doctors if maybe removing the hardware might help you. I've read that some folks experience relief getting the metal out for some reason...makes you think it rubs something causing pain. Do experience more pain with certain movements? Or just when overdoing, or all the time...what is the variation if any? Sometimes that will clue you in and get your op notes from the hospital....go to the medical records office and have your surgery date with you and a picture id, sign their release form and you may have to pay for the number of pages. Some hospitals will even do it all by mail and bill you.
  • Hey Candle,
    Thanks for your response.
    I have requested the Op notes. We will see if they reveal anything. I have said since the begining that the hardware needs to go but unfortunately I can't get a surgeon to even entertain the idea for a second.

    As far as defining the pain:
    No matter what I do. As soon as I start with any activity that requires standing or sitting the right leg becomes a roaring ball of pain that runs all the way to the foot. (Including numbness and tingling) The left leg, hip groin and thigh.
    Of course, I can isolate it often to the hip and groin and saddle area. I can get it to settle down to a dull roar by using heat or ice and laying down but then the minute I try to do anything again it's right back. If I push it to much even for an hour or two for one day I will pay for it for the next 3 days. I would start with the pain in the back but, you get the picture.

    My point is the surgeons that have seen me say they don't see anthing wrong and my physiatrist appears to be running out of ideas and I am running out of stamina.

    Losing faith in the Medical community and there's nothing I can do about it.

    Brian, I really don't have any experience with ADR or know much about it but have read many threads on here of those that do. I'm finding it hard to believe that we are still healing 2 years later.

    I am with you. You know when there is somethig wrong, But...How do you find it?

    Perhaps you could start a new thread and ask your questions about ADR. You may possibly get some responses that way.
  • Your situation sounds very similar to me. I had a PLIF at L4-5 two years ago. I developed a new leg pain in the hospital which has never gone away, and I still have all the original pain, too. I had a second surgery last year to see if it would help with the radiculopathy...but it was a very temporary fix.

    I have spent the better part of the past two years tracking this down, pretty much on my own. I had different surgeons for each of my procedures, and both of them told me this may be as good as it gets...and that I should try the spinal cord stimulator. I said "no thank you." I will keep looking for a solution...and I am very optimistic that I have found one...time will tell.

    Have you had an EMG and nerve conduction study since the surgery? If not, that would be worth having. Do you have any reason to believe your hardware is causing a problem? Do you feel it when you move? I cannot feel mine at all and I have had imaging done that make everyone think it is tight and in place.

    Have you had a flexion X-ray to check for instability? Did you have spondylolisthesis prior to surgery?

    Sorry for all the questions...these are just some of the things I have considered/done in tracking down my problems.

    Don't give up. That is the most important advice I can give you. There are tons of excellent physicians and specialists in this country. You just have to keep looking and researching and pressing forward. Until someone convinces you there is no possibility of getting better, there is still hope. But it may require a lot of work on your part to find answers.

  • Hi Gwennie,

    Thanks for the encouragement. I'm just not sure where to go from here.
    I did have an EMG/NCS done several months back. It showed decreased in the L4-L5 but we knew that from the fusion. As far as the flexion x-rays? Yes I had them and they were fine. And did I have spondylolisthesis prior to surgery? Gosh I have no idea. If so it was never mentioned to me.
    My hardware images all come out beautiful as well. But since about 3 months post op I have had this sharp horrendous pain just to the left of my incision. It is intermittent and comes on with movement for no apparent reason. Often like a swarm of bees have come in for the kill-with knives not just stingers. I have complained to no avail. When I first started complaining I was told it was muscles repairing themselves. Now, they have no answer.

    Can you share with me what the solution your are optimistic for yourself is. I realize everyone's story is different but would love to hear a good story. Especially for yourself. You have been most helpful. It's quite possible it's already on here and I have missed it. Just point me toward the right thread and I'll find it.

    Thanks again,
  • It would take me 100,000 words to even begin to describe my life over the last 10 yrs but I will try to be brief but still convey my full situation. My problems started in Sept 2000 with 3 herniated discs (S1-L4) which led to a decompression lamenectomy. 51 weeks to the day later, same 3 herniated again. Had my first PLIF 12-01, doc penetrated L4 nerve root with screw, took me 4 WEEKS to convince him something was VERY wrong. I'd NEVER had symptoms on my right side and the pain was just unbearable. All I got was "now honey fusions are brutal surgeries, you just have to give it time. Take some Advil with your pain meds to help reduce the swelling" over and over again. At 2 wks post-op he threw a Medrol dospak at me. At 3 1/2 wks post-op when my leg had begun to atrophy and I no longer could walk under my own power, he did a stat myelo/CT and discovered the offending screw. Had an emergency "revision" - in truth a 2nd fusion - the following day, 4 wks to the day after the inital fusion. I won't EVEN get into how the surgeon NEVER darkened the door of my room, or how he did NOT go to the surg waiting area after surgery to talk to my family - either time. I won't get into how I was supposed to be in the hospital 4-5 days and with BOTH fusions was sent home THE NEXT DAY AFTER SURGERY. That's a whole other can of worms.

    That was followed by a year of rehab - every kind you can imagine. They started with one kind and at 6 wks or so in when I wasn't improving I was switched to another type of rehab, 6 wks later and worsening still, tried a different kind. During this time meds were changing frequently. After 1 yr post 2nd fusion doc ordered diagnostic imaging to see what was going on and discovered the fusion had failed - the bone graft was just gone. Gone. Like it was never there. I sought the opinion of about 7 or 8 neuros throughout the Dallas area and each confirmed the failure and each described a very risky, very complex surgery to stabilize my spine and each one GUARANTEED I would have NO pain relief. Well sign me up.

    I've been diagnosed with: DDD, spinal stenosis, Failed Back Syndrome, Failed Lumbar Fusion Syndrome, Pain Memory Syndrome (basically they're saying the neurotransmitters in my brain are "fried" from so much pain for so long and that even IF they could fix my back, my brain would never get the message that the pain was gone), osteoporosis of the hips and spine (a bone density was done after we learned the fusion failed by a different doc who said my bone should never have been used for the fusion had the surgeon bothered to do a bone density before using it he would have known not to), and of course massive arthritis throughout my body. I've also developed muscle spasms all over my body, the worst under my right scapula. I've had more trigger point injections in my scapula, neck, shoulder and up almost into my head than Carter has little liver pills. The spasm under my scapula has been so bad for so long that it's almost rigid like concrete. It seems like I'm missing a diagnosis or 2, but that's plenty!

    That was in 2003. In the intervening 7 years I've had LESIs, steroids orally and injected out the ying-yang, I've had facet joint injections, I've had multiple selective nerve root blocks, and last week completed my 6th RFTC (rhizotomy/nerve burn). I've been on oral morphine for 8 years now, a fact I loathe. Most days I grit through the pain, some days I simply cannot get out of bed.

    I was deemed totally and permanently disabled in 2002 by the way. I was 38.

    3 1/2 years ago I developed severe peripheral neuropathy in both feet. It started with 1 toe, then another and over the course of a year, both feet were completely numb. Numb to the point I can stick safety pins into the toes, in between my toes and all over the bottoms of both feet and feel absolutely nothing. However, my feet are horribly, terribly painful 24/7. I am aware of my feet every second of every minute of every hour of every day.

    I sleep 2-3 hours a night tops, and usually it's in 1 hour increments with 2-3 hours at a minimum of awake periods in between.

    Fast forward to 2 months ago. It was literally like someone flipped a switch - I went from being able to manage my pain through morphine and being smart about what I did and how I did it, to being in excrutiating, debilitating pain 24/7. My doctor recommened we repeat the rhizotomy that was done last in July 09, and I completed the 2nd phase 2 weeks ago. Last week I had my 10th CT/Myelo, which have never caused me trouble in the past but this time caused yet a new pain through the thoracic portion of my spine. I literally couldn't breathe. While I've never been beaten with a baseball bat, I imagine that the pain I was feeling is what that would feel like. Nobody had any explanation or answers, a fact I'm far too used to.

    In addition to the dramatic increase in overall back pain, I've become symptomatic on my right side again. It is the EXACT same pain as when I lived those 4 weeks with the screw penetrating the L4 nerve root. It's a combination of severe sharp pain, a cramping sensation though no cramp is actually going on, my leg is completely unable to support any weight and is beginning to draw up a bit. Not to the degree it did post-screwed up fusion, but close.

    My doctor was supposed to call me on Tuesday of this week with the report. Instead I got a call from his nurse telling me he did not want to discuss the findings with me on the phone and had requested my husband and I come in. HE COULD NOT (would not) SEE US UNTIL NEXT WEEK!!!!!!!!!!!! You can only imagine the fear and the dread I've been living with for the last 2 days with 4 more long, scary days ahead of me. Obviously there is a problem and my mind is racing with the possibilities.

    I wish I could rewind the clock every day, I would NEVER have had that 1st fusion, I may have skipped the decompression lamenectomy, too. I'm scared to death about what is so bad the doctor wouldn't tell me over the phone. I do NOT want more surgery, my track record is abysmal at best, and I'm terrified whatever this is will leave me no choice.

    While my heart breaks for Frog and all of you who have posted here, in a weird way I take some measure of comfort in knowing I'm not alone in all the complications I've had since my first PILF.

    Sorry this is so long, I guess I needed to vent/unload to people who will understand, really understand. My family is wonderful and very sympathetic, but unless you've experienced even SOME of what we all have, it's impossible to truly understand. Not just the amount of pain we are all in and live with every single second of our lives, but the despair and depression and hopelessness that comes with bad news and the cropping up of new/additional/worsening problems.

    Thanks for "listening".
  • Thank you for sharing your story with us, and I can understand how difficult it is waiting to talk to a Dr. They dont understand what it puts us through waiting to get some answers. And to tell you to both come puts another whole level of anxiety in you.
    You have been through enormous amount procedures and pain. I hope that whatever you find out next week will offer you some type of hope for the future. It is hard to be positive when you lead a life of constant pain. I will be watching for a post to what you find out, and will be praying for some positive outcome to all of this for you. Take care, and I will be praying for you. Hugs, Robin
  • Hello again!

    Do you plan to see the doc again who suggested possible hardware removal. Once again, that would allow him to directly visualize your spine. Hardware removal surgeries(had 2) have been a breeze for me, only overnight stays and the 2nd one I was ready to go home after recovery room but had to stay for antibiotics.

    I quoted one of my docs earlier about EMGs appearing normal when there could still be cord or nerve root compression. I am not a doctor, but it sounds like your myelogram report gives some explanations for your pain. Also, most EMGs do NOT test S1-S2 and that could be an area of abnormality in your case.

    Have you asked about the "A" word(arachnoiditis)? Some of your symptoms sound a bit like it(nerves "crusted".) IMO, NEVER believe a doc who says removing scar tissue or chemically dissolving it helps. It may temporarily, but usually comes back worse later. I just went for an independent medical exam(requested by insurance) where a pain doc said I could have had that done before getting a spinal cord stimulator. I said I thought that made scar tissue come back worse? He said, "Some neurosurgeon probably told you that, it's wrong." Actually, 2 different neurosurgeons, one ortho spine surgeon, and 3 anesthesia pain interventionalists told me that plus my own research.

    In my opinion again, don't let anyone push you into a spinal cord stimulator until your potential underlying issues are addressed.

    Again, I am not a doctor, but I'd be finding someone to take out the hardware and letting them directly look at everything while they are in the OR. I would try to get all mechanical abnormalities corrected that I could(except I would not do facet joint or rhyzotomies((sp?)) or scar tissue removal or chemical dissolving. After EVERYTHING is addressed, after having someone qualified(not a physiatrist, in my opinion) determine if you have symptomatic adhesive arachnoiditis, after getting the possible bone out of your canal, you MIGHT consider a spinal cord stim trial.

    Again, I am not a doctor. I think I understand a little of your frustration and NEVER let them make you think you are crazy or anything else. I know this seems like it's been going on forever. Just because they cannot explain it doesn't mean it isn't real. I mean, look at your results! Your doc said your nerves were "crusted" up, your myelogram results, etc. Do not let them just say, oh well, the symptoms are FBSS and so it's failed laminectomy syndrome so get a spinal cord stim. I really think you need to get the doc who offered to take out your hardware to do that first and look at your nerve roots if possible and level above fusion.

    Push, push, push for answers and if possible, take an advocate with you to help push. Make the doc explain the myelogram to you by showing you on the films what is wrong and then tell you what he's going to do.

    Again, not a doctor here, just a patient who has been through the wringer fighting to get answers myself. My stuff: L4-S1 TLIF, hardware loose, too big, infected, BMP overgrowth. Bilateral leg nerve pain(permanent after TLIF) and back pain. Adhesive arachnoiditis and peridural fibrosis and scar tissue around the S1 nerve root, scar tissue all over, etc. After all hardware removed except the cages(bone has fused thru cages), I still have a dormant staph infection hanging out in the cages and now have a spinal cord stim for my leg pain only and use meds for my back pain. Spinal cord stim is successful for my legs(about 50% relief of legs/feet pain) but only did that after the rest was salvaged as much as possible.

    Please post an update, I am truly interested.
  • Just thought I'd follow up with my mini-novel and post what I learned from my doctor re: my CT/Myelogram.

    I have a screw on the left side at L4 that is "very loose". It's pinching a nerve, but I'm reasonably pain free on the left side. Either the pain on the right side is so bad it's masking it, or the Rhizotomy done 3 weeks ago is really working. Every once in awhile I'll have a little bit of pain on the left side, but it's usually short-lived.

    Now.. on my right side. Since my original post, I've completely lost my ability to walk under my own power and actually had to get a cane from my 83 yr old dad. Very humbling. I also no longer am driving. The leg is so weak, but more than that the movement of my foot between the pedals and depressing the pedals just hurts so bad it takes my breath away and causes an uptick in pain that lasts for hours after just a short drive. So I'm done until this is over.

    There has been significant additional degeneration on the right side that has caused the development of a bone spur at S1. My doctor said the S1 nerve is as compressed as it can possibly be, and he said he was surprised I was walking at all. He said he knew I had to be in excrutiating pain. Um. Yes. The radiologist that did the CT/Myelogram said in the report that the dye did not flow into the S1 area at all and that had surprised him because there is usually at least some flow.

    Obviously this means I'm going to have to have surgery again. My 4th. I'm still trying to wrap my brain around it; however, that said I'm ready. The pain I'm in now is unlike anything I've ever been experienced in my life, and I'm quickly running out of the inner strength to deal with it. I can't sleep, I'm nauseated most of the time so I'm not eating much. I'm ready to get the show on the road and just pray to God that it's a relatively simple surgery as far as back surgeries go and that it is 100% successful in relieving this pain.

    I was supposed to have seen the surgeon last week, there are only 3 here my pain doctor said he would allow to touch my back. There was apparently some mix-up in communication - imagine my surprise - so first thing tomorrow when my pain doctor's office opens I will be on the phone with them trying to straighten this out and get my surgical consult appt made. My pain doctor told me when I saw him last Monday that he felt the surgeon would consider this fairly urgent and felt like I'd see him last week since he was personally going to have my films delivered. Well the films were delivered but whoever was supposed to send over the referral form from my pain doc's office didn't and when I talked to the surgeon's office Friday, she couldn't make me an appt since they are referral only. I was livid mad - it amazes me how many people don't do their jobs but keep their jobs! But I digress and that's a subject I could truly write a novel about!!!!!!!

    Thanks again for listening!
  • Oh my,
    I just reread my last post. What a rambling load of nonsense. It did feel better to unload it though. Sorry!

    I am so sorry that you are having so much trouble with your right leg.

    I hate to say this but I am glad they found something wrong. I know that sounds crazy! I mean, I'm not glad that you have something wrong but if you are going to have to have something wrong I am glad they FOUND IT! Did that make sense?

    Did they find the hardware problem with a basic x-ray?

    You know you might get more responses and get a lot more views if you started your own thread. This one has been out there a while and I imagine doesn't get a whole lot of "look see's"

    Either way, I really hope you get some relief from your pain until the 4th of May.

    You don't even get me started on Doctor's offices!

  • Yes, I was still listening and didn't even have to get up for coffee! :)

    1.)Arachnoiditis is scar tissue. Some people have it with no symptoms. Some people have some scattered scar tissue. Some people(like me) have adhesive arachnoiditis. I have scar tissue clumped together with blood vessels and nerve root attached to one layer around my spinal cord. I've got some random scar tissue, too. I would not address it first because you might be written off as a lost cause and just told to get a spinal cord stim(scs.) Someone qualified needs to diagnose this who is used to looking closely at it-like a neurosurgeon or an anesthesiologist who does injections(mine had to use a larger needle during an injection to bore through the calcified scar tissue, he almost broke off the thinner needles.)

    2.) Scs is meant as a last ditch effort to control pain. If you go to the manufacturers' website, they will even say that it is NOT for short term pain control and is only for patients that are not surgical candidates and all other treatments have been exhausted. Mechanical probs-like loose hardware, hardware pushing on nerves, excess bone growth(I think you said earlier you had some stenosis on your myelogram), bad discs, etc.

    3.) I know some people find great relief from facet joint injections, rhyzotomies, but from what I've been told, you must redo them every 12-24 months, average being 18 months, and each time the pain is worse therefore lessening the time between procedures. OK-so if you've got needles and steroids being stuck into your back, that increases risk for even more scar tissue. That's why I personally wouldn't go for it from what you have presented.

    Scar tissue soapbox: no removal or chemical/laser lysis of it. It will grow back worse. This is info given to me by many, many, doctors.

    I hope I've helped explain what I think. Remember, this is only what I think, I am not a spine doctor and have not laid hands on you. I can just repeat what I've been told and share my personal experiences with you. I really hope you get some answers soon.
Sign In or Register to comment.