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Help...

HopeforChuckHHopeforChuck Posts: 166
edited 06/11/2012 - 8:30 AM in Back Surgery and Neck Surgery
I had L5/S1 anterior fusion in November 2008. I had a recent CT Scan that showed a progressing fusion that led my doctor to say that I was 80 percent fused and should be feeling 80 percent better by now. I still get the same old back pain when I try to do anything. For instance, today I walked on the treadmill for 5 miles and now I am sitting here icing my back and taking pain meds. The pain is similar to pre-surgery, although I am on much less pain meds. The doctor says that alone is proof that it worked. One week, I tried to really up my activity and it literally felt like I had poured concrete in my back. When I asked him about my activity level he said I should do even more. He said he never has this issue with any patient and I was getting the feeling that he thinks the pain is in my head or caused by the meds. Actually, I hope he is right. He said my pain source was clear cut and I should be better. He said my fusion is textbook healing. I asked him why I have heard of so many others who took 6,9,12,15 months or more to have resolution--and he said that isn't true with someone with my problem--I should be better already. I also asked about those who are told they are fusing per CT Scan, only to find out later they didn't fuse. He said this happens, rarely, when it actually IS fusing early on, but then it falls apart later, thus a non-union. I hope that isn't me--but I have to say that is what feels like is happening inside. So, here are the options:

1. Maybe the meds are still messing me up. I am totally open to anything. I have kicked Oxycontin and Dilaudid, but am still on Vicodin throughout the day. The doctor said I should get off everything--go to Tramadol and Lyrica--give it a few weeks and he bets I will feel better. I would be willing to do this, but the pain is just unbearable in the morning. I may just try it though. I still question the whole pain med thing because I don't understand how that has anything to do with mechanical stiffness. I can see if it were nerve pain--but this is that same burning, stiff, bain pain, plus the nerve pain (but not like the back pain). The doctor said my pain sensors are totally messed up and it is impossible to gauge my recovery as a result. I hope he is right. Thoughts?

2. He mentioned that we should repeat the CT Scan in a few months and then if it isn't still progressing, he would go in and see if it is fusing--if it is fusing, he does nothing, if it is not, he locks down the posterior. He said it is a simple 15-30 minute operation. He was actually ready to do that operation today, based on my pain level, but backed off when he remembered I am on Coumadin for my blood clots.

3. What about activity level? I do feel like my back wants to bend--like it needs to learn how to bend again--yes, it may hurt for a while, but not bending, and being careful about movement may actually be hindering my recovery. Obviously, everything I read on this board tells me that BLT is just terrible--but at what point does that become counterproductive to not bend? He said I can't hurt it and he would even play basketball and things like this. He said activity is crucial to recovering--even these high impact sports. Is he nuts? Or am I nuts?

Well, I could write a book--but I won't--sorry this is long. Please help.

Chuck
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Comments

  • I had a 3 level 360 fusion on 11/15/2007 and was in the hospital for 11 days. After I got home, my pain actually got worst. A week past, 2 weeks, etc..... on week 4 I went to see my PCP and I told him about my constant pain, and of course my surgeon kept on dismissing my complaints and kept on telling me that I was right "on target" for the type of surgery that I had.
    Well, when I went to see my PCP he ordered an MRI ( I insisted), the MRI showed bone fragments from my fusion had broken off and entered the spinal canal and that was causing all of the pain. Right then and there I ended up going back to the hospital and having a Laminectomy (by the same surgeon) to remove the pieces of bone.
    Fast forward.... after that surgery I kept on feeling bad, no progress, constant pain. My surgeon kept on telling me the same things that your surgeon is telling you now. I got tired of him and I wanted answers, not excuses! I knew that the pain was not in my head, I wasn't nuts!

    Fired the original surgeon, went to a new NS and he diagnosed me with fail back surgery syndrome or FBSS. Another 2 spinal surgeries later, an SCS (spinal cord sitmulator) I am still not fuse. I am still in constant pain, but the difference now is that I have Doctor's that respect what I am feeling, they are treating me like a person and not a "faker". My advice to you is this; if you know in your heart of hearts that there is something wrong, it probably is, you know your body.
    If you don't feel comfortable with the answers that you are getting, get another opinion, don't wait! I hope that this helps.......
    Good luck to you,

    Millie
  • I have read many of your other posts and I am having trouble understanding your situation. Would you mind describing your pain -- where exactly is it located? Is it only in your back and not in your hips, butt or legs? Do you have the pain all the time or are there body positions that will relieve it (like you have no pain for sitting)?

    Do you have titanium in your fusion?

    Have you had physical therapy since your surgery?

    My surgeon would tell you to bend if that's what you feel you need to do. He gave me no rules, simply saying "You can do whatever you want. If it starts to hurt, don't do it." It wasn't very helpful advice but he knows no one rule fits everyone. At my six week check up, he had me bend forward, backward and to both sides. I was standing there saying --"No, I'm not supposed to do that -- no bending." And he told me it was OK and he wanted to see if I could bend...so I did.

    I would think walking 5 miles on a treadmill is a bit ambitious. I think you'd be better off taking several shorter walks each day. Have you tried walking in a pool or swimming, or riding a bike?

    I look forward to your answers and to understanding better what you are going through.

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  • Reading through your post, based on my experiences and those of some very close friends, I tend to believe your doc is right on track. Of course it's just a personal opinion.

    Pain meds over an extended period of time do mess with certain pain receptors. I had been on large doses of narcotics for a couple years and my pain receptors got totally dorked. It took a lot of effort on my docs and my part to get me through detox and off all narcotics and to get those pain receptors reset. Mornings were always the worst which is why it's so difficult to push through that to clean things out and get "to the other side".

    Activity after spine surgery is very controversial between different surgeons. You have to keep in mind that medicine is more ART than SCIENCE and surgeons make recommendations based on their experiences as well.

    I have a surgeon who is all about the patient getting back to work and activity as soon as the initial healing is done. However, if the level of activity causes pain that doesn't resolve overnight, it is a bit too much and needs to be drawn back a bit. 5 miles at one time might be a stretch, whereas if you broke it up into two separate walks you may find you can do just fine.

    If you trust your surgeon, sit down and discuss this with him. From what you've written, it sounds like he is willing to work through this with you.

    Anyway, that's my opinion. I hope you get some sort of resolution that is to your satisfaction.

    "C"
  • I just came home yesterday from a post op 6 week check up with my surgeon. I am 4 1/2 months 2 level discetomey and fusion posterially. I have had increased pain for the last 3 weeks. My surgeon put me on steroid pack and it helped inflammation but not pain. He went on vacation and so I went to my phycian who ordered a mri. Long story short, I didnt have any new issues. My surgeon told me yesterday that I was to take 4 walks a day. Not long ones, just keep the walks the same.
    I think that 5 miles might have been too much, and that maybe you should break it up and do 4 one mile walks. He told me it is not nesasarily the length, just to keep the same distance and do it more frequently to keep the blood to the back. So just thought I would share what you had going on and what he told me. I was hitting it hard with one and maybe like you, it was too much, and smaller frequent are better.
  • Millie,
    That is horrible. I just can't imagine going through what I am going through times three. I have a lot of respect for people who have had multiple levels done. My doc said an MRI would tell him nothing. However, it does make sense (and kind of scares me) to think that a fusion could progress, but due to activity or whatever, start to break apart and the bone chips have to go somewhere. I won't be happy if that has happened with me because they have been the ones pushing me to do more and more. We'll see.
    milliekeylargo said:
    I had a 3 level 360 fusion on 11/15/2007 and was in the hospital for 11 days. After I got home, my pain actually got worst. A week past, 2 weeks, etc..... on week 4 I went to see my PCP and I told him about my constant pain, and of course my surgeon kept on dismissing my complaints and kept on telling me that I was right "on target" for the type of surgery that I had.
    Well, when I went to see my PCP he ordered an MRI ( I insisted), the MRI showed bone fragments from my fusion had broken off and entered the spinal canal and that was causing all of the pain. Right then and there I ended up going back to the hospital and having a Laminectomy (by the same surgeon) to remove the pieces of bone.
    Fast forward.... after that surgery I kept on feeling bad, no progress, constant pain. My surgeon kept on telling me the same things that your surgeon is telling you now. I got tired of him and I wanted answers, not excuses! I knew that the pain was not in my head, I wasn't nuts!

    Fired the original surgeon, went to a new NS and he diagnosed me with fail back surgery syndrome or FBSS. Another 2 spinal surgeries later, an SCS (spinal cord sitmulator) I am still not fuse. I am still in constant pain, but the difference now is that I have Doctor's that respect what I am feeling, they are treating me like a person and not a "faker". My advice to you is this; if you know in your heart of hearts that there is something wrong, it probably is, you know your body.
    If you don't feel comfortable with the answers that you are getting, get another opinion, don't wait! I hope that this helps.......
    Good luck to you,

    Millie
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  • Hi Gwennie,

    I have four pedicle screws and a plastic cage, with BMP. I have not started therapy. I went once and that is what started all this. The therapist said I looked terrible, should be way further along and he didn't think I was fusing. Then I had the CT Scan and the doctor said I should be just fine. My pain is mostly in my back--it is like a very painful stiffness if that makes sense. It is certainly worse with more activity. I could walk a marathon and not have much discomfort--but the second I stop, it stiffens up. Laying down, thankfully, has gotten much better. Sitting is brutal. I can do anything on pain meds. I hear you about varying the activity--but what I am hearing from my doctor is that I should be almost 100 percent fine and able to do anything. Walking on a treadmill for 5 easy miles shouldn't give me the kind of later discomfort that I experience, in other words.
    gwennie17 said:
    I have read many of your other posts and I am having trouble understanding your situation. Would you mind describing your pain -- where exactly is it located? Is it only in your back and not in your hips, butt or legs? Do you have the pain all the time or are there body positions that will relieve it (like you have no pain for sitting)?

    Do you have titanium in your fusion?

    Have you had physical therapy since your surgery?

    My surgeon would tell you to bend if that's what you feel you need to do. He gave me no rules, simply saying "You can do whatever you want. If it starts to hurt, don't do it." It wasn't very helpful advice but he knows no one rule fits everyone. At my six week check up, he had me bend forward, backward and to both sides. I was standing there saying --"No, I'm not supposed to do that -- no bending." And he told me it was OK and he wanted to see if I could bend...so I did.

    I would think walking 5 miles on a treadmill is a bit ambitious. I think you'd be better off taking several shorter walks each day. Have you tried walking in a pool or swimming, or riding a bike?

    I look forward to your answers and to understanding better what you are going through.

  • I found this to be incredibly helpful. Thanks.
    haglandc said:
    Reading through your post, based on my experiences and those of some very close friends, I tend to believe your doc is right on track. Of course it's just a personal opinion.

    Pain meds over an extended period of time do mess with certain pain receptors. I had been on large doses of narcotics for a couple years and my pain receptors got totally dorked. It took a lot of effort on my docs and my part to get me through detox and off all narcotics and to get those pain receptors reset. Mornings were always the worst which is why it's so difficult to push through that to clean things out and get "to the other side".

    Activity after spine surgery is very controversial between different surgeons. You have to keep in mind that medicine is more ART than SCIENCE and surgeons make recommendations based on their experiences as well.

    I have a surgeon who is all about the patient getting back to work and activity as soon as the initial healing is done. However, if the level of activity causes pain that doesn't resolve overnight, it is a bit too much and needs to be drawn back a bit. 5 miles at one time might be a stretch, whereas if you broke it up into two separate walks you may find you can do just fine.

    If you trust your surgeon, sit down and discuss this with him. From what you've written, it sounds like he is willing to work through this with you.

    Anyway, that's my opinion. I hope you get some sort of resolution that is to your satisfaction.

    "C"
  • I really do wonder if my blood clots and the Coumadin blood thinning is slowing my recovery. The doctor seemed to think it isn't having an effect--but it is kind of hard to get the blood to flow to the spine when it is so thin. Hopefully I can get off the thinners soon.
    iowarobin said:
    I just came home yesterday from a post op 6 week check up with my surgeon. I am 4 1/2 months 2 level discetomey and fusion posterially. I have had increased pain for the last 3 weeks. My surgeon put me on steroid pack and it helped inflammation but not pain. He went on vacation and so I went to my phycian who ordered a mri. Long story short, I didnt have any new issues. My surgeon told me yesterday that I was to take 4 walks a day. Not long ones, just keep the walks the same.
    I think that 5 miles might have been too much, and that maybe you should break it up and do 4 one mile walks. He told me it is not nesasarily the length, just to keep the same distance and do it more frequently to keep the blood to the back. So just thought I would share what you had going on and what he told me. I was hitting it hard with one and maybe like you, it was too much, and smaller frequent are better.
  • Chuck,

    Where exactly is your pain? It's possible that you are experiencing SI Joint pain. It can be very similar to your old back pain. Definitely break the walk up into shorter distances. I gave up trying to do 5 miles in one set, it just gets everything inflamed and aggravated.

    Dave
  • Hi Chuck,

    I had a posterior fusion (L2/L3 & L3/L4) with hardware on 2/19/09. I don't know if the level of the fusion makes a difference or not but I'll tell you what I've been going through because I think some things remain the same for all of us and are invaluable.

    My surgery was on a Thu and I went home the following Mon only to return to the hospital on Tue with a kidney and UT infection and discharged on Sat for a total of 10 days in the hospital. The day of my surgery (which was 7:30 am) was rough. I spent the entire day sick and vomiting from the medication. The next morning they put me on a morphine pca and everything was fine. Prior to my surgery I rarely took anything stronger than ibuprofen but when I did I took percocet. After I got out of the hospital (the 2nd time) I could only stand to take the percocets for the next 3 weeks. I couldn't stand being tired and sleeping all the time, not being able to think clearly and dealing with the constipation so I just stopped taking them. From that point on I took tylenol and for the first few weeks I was combining ibuprofen and tylenol only to find out that NSAIDs have been known to impede the fusion process. I stopped taking the ibuprofen immediately. Today I take only tylenol if I really need it and I find I only really need it after a 'good' PT session.

    I've been in PT now for 3 full weeks and it has been great. I have all of the same reservations about what I should or shouldn't do as many others on this forum but when my therapists say we're going to do something and I look at them with the look of 'oh really' or 'just how are we going to do that' or I respond with 'I'm not supposed to do that' they simply tell me what to do and show me how to do it and I do it. I'm amazed at myself. My therapists tell me every single day to have patience and I think that's the key. Maybe you're trying to do too much? In addition I walk 4-6 miles non-stop every day.

    I am not saying that I don't have discomfort because I do. The only time my back actually hurts me is if I twist or bend too far and I know to stop. My discomfort is with all of the muscles on both sides of my spine and my hips (gluteul muscles & hip flexors) and some sensory nerve issues. But...PT is what helps all this. Aside from showing you how to move now that your spine is fused the therapists are helping with muscle spasms and nerve issues with massage, ice, heat and electrical stimation. This is mainly due to muscle imbalances. Think of all the years you were in pain prior to surgery, your muscles naturally became unbalanced and overcompensated due to the pain regardless of how fit we are. The real job now that the back is stabilized is to balance all the muscles. This can be a long painful process, again, no matter how fit you were before. In fact your muscles may be responding even more stubbornly 'because' you were physically fit before. As the muscles get stronger and balance starts to come back I realize I am improving but it is at a snails pace and I just have to accept that. My doctor told me up front that it would take months to fully recover. My improvements are so incrementally small that some days I find myself questioning my decision to have this surgery but I know in my heart it was the right decision and I just need to be patient.

    Feel free to ask questions if I missed anything. I know it's disheartening at times but have faith in your surgeon, try to heed his advice and have patience.

    Sincerely!
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