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Second opinion appointment tomorrow re my "infection"??

nelnnel Posts: 402
edited 06/11/2012 - 8:54 AM in Back Surgery and Neck Surgery
Hello there! Sorry this is a bit long!

I am due my second opinion consultation tomorrow and I am a bit worried I have made too much fuss.

My fusion was october 09. I had an initial wound infection until 6 weeks post op then recovery pretty much "as normal". I always thought it seemed slow and I did have strange pains but then how do you know what is normal?? To be fair the hip and leg pain that I had had pre op disappeared as soon as I came round - I hadn't realised how bad it had been until it had gone! So I generally thought it was all good and was pretty pleased if a little frustrated with the pace of recovery (normal - I think?)

Then last April I had an awful flare up on Easter sunday with severe front of thigh pain and spent a couple of days in bed on codeine/tramadol. This was like the pain I had pre op The following week my mom went into the hospice so I spent the next 11 days driving a 100 mile round trip to be with her before she died. I took some advice off here and did Psoas muscle stretches but, tbh, they didn't do much.

After that I had residual pain in that leg and my back was pretty stiff and sore too. The back pain was a new thing - I had no back pain pre op and none until after my mom had died. I then thought that maybe it was a stress reaction etc? I was pretty depressed for a while back then and I know that the two, pain and depression, go hand in hand so I thought that was why I was suffering. This went on for a couple of weeks maybe a month.

Then, late last May, I spiked a fever and was really unwell for a few days. I decided at this point that my back must have been bad because I had been germinating a virus. My logic was that when you get flu etc your muscles ache so it seemed obvious that your weakest points would ache the most.

Anyway, then my back never got better so I went to see the GP. I saw some stoneage locum who told me that as I had had back surgery I would have back ache for the rest of my life. I explained that this was a new pain and that it was debilitating, that I was back taking pain meds to sleep etc but she didn't budge.

At that point I took matters into my own hands and arranged physio with a new place. Funnily enough the day I was due to go I had a major flare up - I crouched down to get something out of the fridge (bent the knees not the back!) and couldn't straighten back up.

When I got to physio she couldn't believe how bad I was and thought I looked like a pre op person not a "fixed" person. Anyway I ahd treatment there that day and for a few weeks and I did get a bit looser but still had the thigh pain and was still "not right".

Start of August last year I noticed that it hurt when I got in the car where my back touched the seat. Had a poke and found a lump at the top of my scar. Physio said to give it a week or so to settle but it didn't so I went back to surgeon who told me some stuff about tendons and to go away. I asked him about the thigh pain and he said "sacr tissue". Not joking I was in there like 2 minutes.

Anyway less that two weeks later my actual scar comes up in a blister. Off I trot to GP. Oh yes, infection! Like I didn't already know. I had antibiotics and went back to surgeon who said oh yes, infection. Two more weeks of antibiotics from him, then he said it was ok. Within two weeks it was bad again so I had another week of antibiotics and an MRI. It did show an infection that he says was a stitch sinus. It also showed some tracking back towards l4l5 but he poopooed that and said 14mm is nothing! This was last October. He said that it wouldn't come back.

So then this April it came back! Not on the outside but I had sudden onset pain in the lower back, right hip, thigh and groin and spiked a fever pretty much immediately.

I saw him two weeks later after taking antibiotics from the GP and feeling a bit better but still having pain. He moaned that I hadn't had a blood test before taking the antibiotics. He then did bllods and x rays.

Xrays showed loose screws and bloods were high for either crp or esr. I can't remember now. So he told me that day that he thought the infection had made my fusion fail and I might have to have it redone. So I went for a CT and MRI that night.

The next week when I saw him he only had the MRI results (even though the CT was in his pigeon hole according to his secretary). This showed inflammation around my right side l4l5 facet joint and some erosion of this joint. So then he said he thought the infection was there. More blood tests.

The next week the bloods were normal (I feel I must point out that when my back was leaking the previous september my bloods were normal!) and he said I was all better. I asked if I was fused and he asked me how he would know! So I pointed out that I had had a CT and so he looked at it only then. It showed the erosion of the facet joint on the right and also both MRI and CT confirmed loose screws. He suggested that the erosion was caused by the screw rubbing on the joint.

He said that if I couldn't cope with the pain of the loose screws he would take them out. This was May.

So I have made an appointment to see another surgeon who isn't so closely involved. Have I done the right thing?

I am still in pain in my back, pretty much all the time, but I can just about live with it. I can't garden etc but can still swim and walk, although less far and less fast.

The pain has moved to my left lower back and there is a sore point down there when I poke about. It still hurts to lie on my right side.

I have intermittent leg pains in both thighs, groin, buttocks.

My thinking is that if I am going to stay just as I am I can live like this in preference to more surgery. I will just have to keep popping the pills.
But, if I am going to keep having these flare ups that put me out of action for a couple of weeks at a time and then restrict my activities for another month or so then I would like a solution. I ended up cancelling my holiday this Easter because of this and living with this hanging over me is pretty depressing. I don't feel I can make plans.
I am also concerned that actually the infection is not cleared and that it is on the metalwork just waiting to rear its ugly head. The combination of pain and fever was too much! I have done quite a lot of reading and know that these infections can live on metalwork in a biofilm that is pretty much impenetrable to our immune system or antibiotics. When we get ill it is because they sort of pod off round your system occasionally.

I suppose this surgeon may not know anymore whether the infection is lurking or not but I am hoping that fresh eyes over all the evidence may at least give me some answers.

What if it is the facet joints causing the pain not the screws? If the old surgeon just took the screws out that wouldn't fix it would it?

What do you think? Have I done the right thing? Should I just suck it up and wait and see like my first surgeon wants?

Thing is I had a period over the winter this year when I was PAINFREE!!! I know what right feels like and this isn't it. I just want to go back to that.

I hope I am not making a fuss over nothing, although having just typed this all out I think I am doing the right thing.



  • I think you did the right thing to get a second opinion. I wonder why an IV antibiotic treatment would've been a better treatment? Keep a watch out for a fever again. But I'm not a Dr. so I think it's good you're getting another opinion. Hopefully this Surgeon will clear up any questions you may have concerning your surgery. I hope you get your appointment soon with the second opinion and I think it's the right thing to do. Thinking of you take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thanks Charry. Sometimes I think maybe it's not so bad after all. But then I spoke to my husband when he got back and he agrees with you.
    Thanks again
  • With something as important in life as your spine, or being able to function, I think it's good to have more than one opinion. I had 3 before my surgery. A new impartial observer couldn't hurt.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • So I went for my second opinion today.

    This surgeon took his time to look at all mri scans going right back to May 09 pre op.

    Turns out my facet joints above and below were always a bit dodgy. Never knew that!
    He did confirm that my MRI immediately pre op didn't show nerve impingement, my surgeon said so too. However when he got in there during surgery I had a bulge on the left side and when I came round the left sided hip/leg pain was gone. Just goes to show how much these scans don't show!

    The x ray I had last October when I was 12 months post op and had the leaking back showed loose screws even though my surgeon said that they weren't loose then. Also the MRI showed some whiteness in the l5 vertebra that this surgeon said could have been infection. Fab.

    The latest CT did show loose screws.

    This surgeon was much less concerned with the whole facet joint issue.

    But, and here is the rubbish bit, he also thinks I should wait and see. He also said that this might be as good as it gets. He said maybe the loose screws cause the pain (but I have since thought that I was pain free for 4 months this winter and my screws were loose then) and that it might help to take them out at a later date.

    Also my fusion is not as solid as I was lead to believe. No "outside fusion" only a little bridge between the vertebrae. This surgeon did say that might not be too much of a deal but it didn't sound good!

    He agrees that there could well be one of these dormant infections on the metalwork but also thinks it unlikely it will reoccur. But it could be in the cage and then it is tough even if it does come back. Cages have to stay in. If the infection comes back he said to take the screws out.

    I thought I was OK but then later this evening it has hit me that I am 35. I could spend the next 50 years in pain. I don't think I can handle this.

    So I am going back to physio and a bit of me hopes that it causes the infection to flare up so that they have to take the blooming screws out! I think that the wierd pneumatic hammer thing jolted it out last time so maybe it will do the trick again!

    Although, from what I could tell, taking the screws out might not fix it.

    I am also going to go back to my GP and try and get referred to pain management on the basis that codeine just doesn't cut it!

    I am pretty bummed out right now. I have had a cry and now I need to try and get on with it and suck it up I suppose. I just feel frustrated because I had the surgery because of constant leg/hip pain and now I have constant back/hip pain. I wonder if I shouldn't have bothered.
  • Thanks for that Jelly.

    I know I am being negative but I am very frustrated. In my heart of hearts I still think something isn't right and I just wish someone could work out what it is and fix it!

    I am a bit worried about how minimal my fusion is, but maybe any fusion is good enough. But like you say, what if I do try and do "life as normal" despite the pain and it breaks? The problem is that the original surgeon always says that if it hurts, don't do it. Is that still true or should I just power on through?

    Anyway, I am off for my swim now and then I am going to call to make physio and GP appointments. One way or the other I HAVE to be able to live like this!
  • I hope that you enjoyed your swim and that the exercise made you feel better. (I tend to feel more cheerful after exercising.)

    It is not surprising that your frustration and disappointment is making you feel negative. It is horrible to feel various pains and symptoms which stop us from moving on from the surgery, and cause us to keep wondering what they mean and worry that something is wrong.

    I am trying to ignore various pains and symptoms that medical people have acknowledged but don't have a plan to deal with at the moment. I am trying to convince myself that they will either get better or worse. If they get better, that will be great! <:P =D>
    If they get worse, then I guess that at some point someone will decide what needs to be done about it.
    Meanwhile I am trying to get on with my life and pretend that everything is fine.

    Take care nel. >:D< >:D<
    You are not alone.

  • I am so sorry to hear how you are still suffering.
    At least this second opinion surgeon is saying very similar things to the first one.

    I hope that you can get referred to pain management. I believe that they will also look carefully into your condition and may have some ideas to help you live with the pain, at least until some decision is made of how to deal with this.

    I would want to ask if the vertebrae aren't fused properly, and the screws are loose, how long will this hold until it gets looser and can the fusion that has taken place actually break. Now, as you know, I am just a fellow spine patient, but these are things that I wonder.

    If you can manage to live with the pain how things are at the moment, perhaps that is what you should do, at least until or if something else starts to show itself.

    I can understand Nel, how frustrating all this must be. We hope that after surgery, we will feel better and be able to get on with our life. When the old or new problems start to appear, then it is just so disappointing.

    Have you started your summer holiday yet from school? I seem to remember that you work in a private school. If so, I really hope that you will be able to relax, refresh and have some fun. I have one more week to go and then can slow down and take time to relax.

    Hoping that you will have some more 'back to normal' time very soon and that it will progress to stay with you.

    >:D< >:D< >:D<
  • Thanks Jelly!

    I am sorry too that you are going through the mill with all your spine issues.

    I hope you get some good R and R during the summer break. I have broken up (two weeks ago) but , of course, caught a nasty cold that wrote off the first week! We have some bits and bobs planned for the hols so I hope to cope with them and even enjoy them!

    Fingers crossed you get better not worse.

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