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.