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infection recovery roller coaster

nelnnel Posts: 402
edited 06/11/2012 - 8:59 AM in Recovering from Surgery
Hi again all and a happy new year (not posted for a while!)

Well my recovery seems to be really up and down. At the moment I am in another down. My hardware removal and infection clean up was 5 months ago.

The week before Christmas I managed to go to the pool twice and I think I did about 16 lengths both visits. So I felt quite positive. I did have a bit more pain and needed codeine a few nights but was generally ok. Then boxing day I caught a cold that totally drained me so I didn't do much except my daily walk until the new year.

New year week I went to the pool twice again and felt quite good. I actually started to feel like I was going to be OK. I saw the GP on the 9th of Jan and told her I was feeling better - still tired but that if I pace myself throughout the day I could do more. So I would swim in the morining then rest until afternoon and then go for my walk etc. I maanged to swim 3 times that week (a total of 68 lengths!) and i felt good. Really positive.

Then on monday this week I returned to feeling like a zombie. It is like a fog of tiredness comes over me and I have no uumph. I managed my swim on Monday morning but haven't been since.

I am worried that actually the two weeks of feeling better were the anomally and that I am going to be stuck in this half life situation forever. I have noticed that the increased tiredness is accompanied by more pain and that my back is still tender to the touch in the exact same area where it was before the hardware removal. I am really worried that I still have some chronic infection in there and that, as it will be a biofilm bacteria, it won't show itself on blood tests etc. I don't know if I am being paranoid or not. I really don't know what to think, feel or do for the best.

I feel pathetic to be honest because I can't do anything. I am still off work and totally freaking out about going back. Especially as, after my positive GP visit last week, we had said it will probably be within a month. There is no way I could have gone to work this week.

I have no way to know if my recovery is normal or if I should be worried that something still isn't right. I knew I wasn't right before - and I was right. But maybe this is how I am supposed to feel.

I am sorry to rant on - there is nowhere else to turn. Thanks for reading.



  • Have you placed a call to your GP since this has happened? It's good to let your doc know and to have someone who isn't the one suffering do the analysis and reasoning required to figure this out. For all you know, you may have contracted a bug with your immune system being down, Especially since you have been going to a pool. I assume it's public pool, which is a great place to become exposed to things.

    Don't panic. Just take a few easy steps to reduce and eliminate your concerns. Hope you feel better soon!

  • Thanks C! I know that I am probably over-reacting. I took myself out for my daily dog walk after posting and did manage to feel better mentally. I am seeing the surgeon next week and have an appointment with my GP a week later. I think I will just have to be more forceful with my concerns next time. Maybe this is just the way it works and I have to ride it out.

    Thanks for listening.

  • Hi Nel

    I wonder if this isn't normal? About 2 months ago I was absolutely back to being my old self. Energetic, engaged even enthusiastic! Then I had a horrendous business trip. 5 cities in 6 days, too little sleep, much too much sitting.

    I was flattened. Took me 3 weeks before I could again bear to do stuff other than I absolutely had to do. I take comfort in the fact that I am not flushing, I have been able to cut out pain medicine except for Panadol and really love my daily Nordic walks. Here's to the one year mark...
  • Hi Emily

    Thanks for your input - it is so hard to judge what is and isn't normal given the relative rarity of these infections. I am sorry to hear that you too have had a rough ride recently. I think maybe it is normal and I guess that, as I had this infection for two years before the debridement, maybe my recovery will just take even longer than yours. I hope that this is all it is. If I knew for certain then I could just get on with it.

    It is good to hear that you have been energetic - I can't wait to get up and do stuff again. There are only so many books I can read! I hope you continue to improve and have no more downturns.
  • Hi again guys,

    I saw the surgeon last weeks and my GP yestterday.

    I think it may be time to ditch the surgeon. Despite having seen my infected hardware he still maintains that when my back leaked in September 2010 it was a superficial infection. This is despite my periods of extreme pain and/or fever in the period of April 2010 to Sept 2010. He only sees what he wants to see. He says my bloods are normal and so I can't have an infection any more but, and this is how the revelation came about, I said that "my bloods were clear when my back was actually leaking" and he said "oh they will be if it is a superficial infection"!!! I nearly killed him.
    Thing is I had both MRI and X Ray done in Oct 2010 (this was when my back had been leaking and I had had about 4 weeks of antibiotics at this point)and he said that my screws weren't loose and that the MRI report said there was tracking back towards l4l5 but that it was nothing. Then, when I saw the second opinion guy in July 2011 he said that my screws were loose then (x ray) and that there was a reaction in my vertebra around the screw that could be infection or just a reaction to the screw (MRI).

    My GP was much more sympathetic. She is a bit concerned at this downturn - I have yet to get my energy back. I told her why I am so worried - mostly I am really scared that the infection is in my bone, but because the surgeon didn't want it to be he will have missed it. I think my hardware was infected all along and so the bacteria had best part of two years to get in my bone. I could, of course, just be being paranoid. I hope so.

    The GP recognises that I need a definitive answer and has ordered another MRI. She hopes that I am wrong but says that because of my battle last time to be believed my brain just fixates on the pain I have and will imagine the worst until I know for sure.

    I am finding things pretty tough at the moment - I need the answer and then I can move on and get better. I can't cope with this uncertainty and feeling awful too. One or the other but not both!

    Anyway, please keep your fingers crossed that I am just paranoid and that all my pain is down to scar tissue or other, less health threatening, things.

  • I agree that a fresh pair of eyes would probably be helpful.

    When I had the continuous discomfort and flushing after my first fusion, my surgeon was dismissive. I did find a new guy and after an MRI he ordered a SPECT CT for me. The infection and inflammation were VERY obvious on that. Perhaps you can ask about that?

    It certainly galvanised him into action for me!
  • Thanks again Emily,

    I had my MRI on saturday and hope to see the surgeon soon. Then I will get the CD off him and take it, with my other 4, to see someone else. The last MRI I had (in May, just after a really bad flare but before hardware removal) did show swelling around my l4l5 facet joint and arthritis in that joint but did not show infection according to the report. Funny that when it was obviously there!

    I wonder how much of my pain might just be down to the facet joint or knock on effect of fusion in the si joint.

    I just need to get over this tired thing - then I could deal with the pain stuff better!
  • I remember when I first went to the new surgeon, his thinking was (because it was very uncomfortable to twist) that it was the facet joint causing the trouble. The SPECT CT then revealed the mess in the original fusion site. During the third surgery he did strip out the facet joint which apparently was the cause of the spinal cysts I also had.

    What they can do is a facet block, which was the plan for me until the true cause revealed itself.
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