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Scar swelling and pain 10 months post fusion - paranoia!

nelnnel Posts: 402
edited 06/11/2012 - 8:46 AM in Recovering from Surgery
Hi again. I have been keeping a low profile recently as I feel I had hit a wall in my recovery but now it seems I am on yet another down. I am going to have to have a bit of a rant, sorry!

My recovery has been slow all along (IMO!!). I had a wound infection appear 10 days post op that stuck about for a month so I was banned from physio/exercise for ages.

Then when I started doing more exercise I got knocked back, then again when I returned to work 11 weeks post op. I struggled through at work until about March (Op was in Oct) when I started to (finally) feel better. This was about the 6 month mark and I thought "Oh, everyone is right about the magic 6 months" ;)

Then I had a spasm over the Easter weekend that made me stay in bed for two days on as many pills as I could get. Then my Mom, who had terminal breast cancer, had to be admitted to a hospice on the Thursday after Easter. I drove to see her (50 miles each way, on UK traffic filled motorways!) each day she was in there until she died 11 days later. After that I took both an emotional and physcial turn for the worse.

I continued to struggle through at work, never feeling as good as I had back in March. Then I went to the GP about mid June and was told that as I had had back surgery I should expect to have back pain for the rest of my life. She was so patronising and (IMO) stuck in the dark ages. I insisted that I had felt loads better than I was at that point but she just repeated that it was to be expected.

Well, a week later my back pretty much froze up. I couldn't put my shoes and socks on again I was that bad. I ended up having a week off work.

Since then I have slowly got a bit better, but still not as good as back in March.

Then last week my back started to actually hurt to touch - I noticed when my car seat touched it. So I had a poke at it and there was a little lump under the scar. The lump is getting a bit bigger, is warm to the touch and the top inch of my scar is inflamed. My physio said to give it a couple of days to settle by itself, he thought maybe just tissue inflamation. Well it hasn't got better so I am supposed to see my GP on Friday. Couple with this hip, groin, thigh pain and I have had enough!

So, has anyone else had anything like this? Could it be, as I have a horrible feeling it is, an infection? If so how the heck could I have an infection now? I feel totally paranoid now, but also wonder if if there is a problem inside that might explain why my progress is so random and so full of bad weeks compared to the good days. I did a bit of google last night (I know!) and came across stuff about hardware infection etc and am pretty scared that I am going to need more surgery. I know I am getting miles ahead of myself, lets hope the doc just gives me some massive antibiotics and sends me on my way!

Sorry, again, to moan, but this is the only place where people actually get it!


  • Very sorry that you have had to endure so much over the last several months.

    It's good that you are going to see your GP on Friday. One thing that can linger in the body undetected for quite some time, is MRSA. Not trying to say that's what you are experiencing, just expressing how important it is to see your GP when something anomalous like this occurs.

    I think it's perfectly normal to be concerned about something like that happening. Many times I've "just known" when something wasn't right and needed to be investigated further.

    Keep us posted.

  • Thanks for your kind words.
    I have called my surgeon's secretary today and he wants to see me so I have been squeezed in tomorrow. I must admit I am really scared that it is something bad/will require more surgery. I think I might not sleep very well (again) tonight.
  • In my mind, if I knew that tomorrow I will have just the right expert looking at things for me, I will be able to breathe a sigh of relief and rest. I'm really glad that you were able to get squeezed in for tomorrow. Let us know what the surgeon has to say.

  • Well, there is no infection. Phew. The swelling is caused by the muscles pulling on the tendons that attach to the spine processes apparently. He said it should settle down.
    The pain in my hip/leg etc he puts down to scar tissue around the nerve and he says it will settle down.

    I suppose what I really want to know is "when?". I am so fed up with not being anywhere near 100%. But I suupose I should be greatful not to be in all the pain I was in this time last year.

  • I am so pleased that you were able to get an appointment quickly to see your surgeon, and that there was good news that there is no infection.

    Although your spine and surrounding tissue needs 'time' (that ever present requirement for spinal surgery recovery), that is a much better alternative to needing further surgery.

    Please don't feel you have to apologise for moaning to us. That is part of the deal when we join here. You can offload to us and we will offload to you.
    (You have helped lots of us spineys along the way, and we are glad to help you too. :D)

    Hope that things start to feel more comfortable very soon and that you feel less anxious about what is going on now. >:D<
  • Hi again and Thanks Jelly!

    I am relieved not to need surgery but I am just soooo frustrated with my lack of progress since April. I suppose I was sort of hoping for a "concrete" reason for it all rather than this woolly time to settle etc. I am a scientist (Chem teacher) and do so much better with order rather than all this vagueness. I have said to Drs and PT that I just wish there was a book to read that would tell me what I should do and when to do it so that I would get better as fast a possible! It's the inconsistency that is getting me down, and I have noticed a massive change in my mood when the condition of my back changes. It doesn't even seem to matter what I do - some things (dancing the night away at my friend's wedding for instance) cause no problems but going out for lunch cripples me. Arrrrghhhhhh!!
    Anyway got to go and have my bath now (me time!!).
    Thanks for listening!

  • ..... with that feeling that we need to 'do' something to speed things along. I find that my walking, exercising and physiotherapy as well as eating healthily make me feel like I am doing my bit to speed things along.

    I hope that you enjoy your bath and feel very relaxed afterwards.

    I am going back to work on 1st September, after a very long break. I am looking foward to getting back to normal life, but at the same time, I feel rather nervous. When does your school start back?
  • Glad to hear that it is not an infection and that it should settle down in time. Oh the curse of a scientific and logical mind! I used to be a mechanic and saw things in black and white and how all the pieces fit together to make something tick. Break one of those pieces and it brings the machine to a complete stand still. The big problem with anything to do with our body, is the "human element". Totally unpredictable and the most frustrating variable on the planet.

    I found that during recovery from surgery, if I track how I'm doing, what I've done that day, how I feel, etc ... that it gave me something to piece together and crunch numbers in order to see trends and success. It's just something I found that would help give me a little peace of mind when I could see improvement. It's kind of like when you live with someone and see them every day, so you won't notice change as much as you would, if you hadn't seen that person for a year and then suddenly show up. I may not have been able to see progress during the day, but at the end of each day, I could review my notes and see the progress in black and white.

    Thanks for the update. Glad that you are okay.

  • Nel,

    I am so happy to see you have no infection. The scar tissue certainly sounds plausible. But I am in the same exact boat as you. I have many of the same symptoms. Lower back, hip, groin and thigh issues. I too had my surgery last fall, In November. My surgeon has been unhelpful. I am having a series of ESI's starting in 2 weeks and if they are not helpful my pain mgt Dr is referring me to a Neurosurgeon. The frustration lies in doing everything I can do, physio, diet, medication, as prescribed and still feeling no better than I felt before surgery. Maybe a little but the trade off is much worse now in other areas. Please keep in touch. PM me anytime. The support here is invaluable.

  • Thanks Guys! I really think I might have gone mad without the support of this board. Other people just don't get it.

    Trasee, I saw your post somewhere else and my heart goes out to you. I followed your return to work posts and knew you were having a tough time. It is sooo hard when work is all you can manage in a day. The docs just don't seem to understand how debilitating this pain is. I wouldn't wish it on anyone but I think some of them could do with experiencing the pain we have so that they understand us better!! I have been doing all the right things too - I am startting to think maybe I would be better just doing what I want! The whole "listen to your body" thing is really hard when your body seems to mumble everything!! I hope you get some relief soon.

    I feel like all I do is moan, and I do realise that I am better than before the surgery but not that much better. And now that the hip pain is back I can't sleep again, so am back on codeine at bed time and really feel back to square one. The pain is now mostly down the front of my left leg.

    It has been summer holiday so I have been off work, which helps, but like jelly am back on september 1st. I am really worried that I am going to end up pruning my life back to just going to work, swimming and walking. No shopping, meals out, fun etc cos it is always the final straw! So I end up resenting work cos it is all I can do, and if I do something else then I end up in bad pain and then the cycle all starts again.

    Thanks again for all your support.
  • Well, I think I might have an infection after all :(

    My scar has swollen on the outside (right on top of where it was swollen inside) and it has formed a sort of blister. It is red, hot and I can't bear for anything to touch it. The pain extends out to the right side of the scar too. Driving is agony - everytime I have to move my feet it catches.

    I showed it to the school nurse today and she thinks it is some sort of infection. Now I have to go and see the GP again tomorrow.

    I am soooooo fed up right now. If it is an infection and the surgeon didn't catch it when he had the chance two weeks ago I will be really mad! Of course I am now back at work so getting to appointments etc becomes really hard work.

    So here's hoping it is a stitch abcesss and not a problem with the hardware.

  • If it may be infection and good you're getting seen right away. Best wishes and prayer for your healing and keep us posted what the Dr. says. 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
  • and I hope that things will be able to be sorted quickly now, if there is an infection.

    I can totally understand your frustration at not picking up the problem two weeks ago. I suppose as so many spinal patients suffer so many different pains after surgery that are just part of the normal healing and recovery, it is easy for a doctor to miss something unless it is obvious what the problem is.

    I got on quite well today. I was very achey when I got home and had to lie down, but I made it! <:P

    It felt good to be back and be useful. :D
  • Hey Jelly - glad to hear you got on OK. I really wish I could have taken 6 months rather than 11 weeks!!! Jealous!

    I do have an infection, GP says go back to surgeon but has given me antibiotics to be going on with. It might just be a stitch abscess - he thinks I would be in loads of pain if hardware infected. But he advised me not to do exercise etc incase I drive the infection to the hardware. He does think I might need more surgery to clear it out though. :(

    I cried in the car on my way home. Now got to go and teach. Clothes really hurt on the blister/scar so I am not looking forward to wearing work clothes.

  • What you need is the equivalent of a corn plaster of the correct size to put around the sore area to protect it from being touched/rubbed. ;)
    Could you think of a way to arrange that?

    Oh nel, the thought of possibly needing further surgery must be awful. :''( However, if that is the way to deal with this problem, and it would move you towards a solution, then it would be worth it. I would imagine that it would be far less invasive than your original surgery. I can understand that you needed to cry on the way home. >:D<

    Let's hope that the antibiotics will do the trick and nothing more will be needed.

    Hope that you have a fairly comfortable day and get lots of support from your colleagues and the children. >:D<

  • The idea of a corn plaster is a good one but the swelling is growing (hope the anti biotics will stop that) and the skin all around is really sore. Not sure what to do. I might see if I can fashion something - bit like Blue Peter!

    I nearly went through the roof trying to put my school trousers on. The wasit band is at the wrong height on everything. I am having to wear a skirt pulled up above my waist (like how you did when you were younger to make it shorter!!).

    As for support from colleagues! LOL! They haven't got a clue. But never mind.

  • Hi nel,

    I always wanted to be a Blue Peter presenter!!
    Have you got one you made earlier? :))(
    Be inventive 8>

    You did make me laugh! Brought back memories or rolling our skirts up at school. Watch out! You'll get told off! :S

    I hope that someone will notice how you are struggling and at least give you an encouraging word. >:D<

    Hope it isn't too long before you get some help and start to feel better.

  • Thanks Jelly, How did you get on today? Are you coping with it all?

    I heard from the surgeon at 5.25! He has decided that I have to have a blood test to check IF there is an infection and I have to have it tomorrow! Nothing like giving me time to organise it eh? So I have grovelled at the GP and they have squeezed me in for tomorrow morning. But that means I will be late for school so have had to sort out cover work and I was supposed to be doing practical grrrrr.

    I will be seeing the surgeon next Thursday when I hope he will have decided on some course of action.

    TBH at the moment the actual pain from the swelling when I touch anything is the worst thing. I am getting loads of aches around my back from trying not to let my car seat touch it, or anything else for that matter.

    I did talk to the School nurse and she is hopeful that it might be something they can sort under local anaesthetic rather than needing a whole surgery so fingers crossed. Apparantly we can "spit" internal stitches for some time and maybe that will be all it is. Knowing my luck though.....

    Look forward to seeing you on BBC1 at 5pm Jelly!!

  • I had a good day at the school. The new teacher that I am supporting is lovely. She is great fun and very appreciate as well as very supportive about my limitations. :D

    However, I am finding that it doesn't take much at all to cause pain. In fact I am surprised at how much I am feeling my back. :S
    I had thought that I would manage better than I was before surgery, but I seem to be more limited in my movements.
    Hopefully things will improve soon.

    One good thing is that the exercises and technique that my physio gave me to open the very heavy fire doors, does work. :)))

    I'll think of you tomorrow when you have your blood test, and next Thursday when you see the surgeon.
    I'll be watching out to hear how you get on. :D

  • I found the same thing when I went back to work. It does take it out of you, in a different way, but still it does. For the first half a term pretty much all I could manage was my bit of swimming, work then rest. Take it easy and listen to your body (I know - easier said than done). Only one more getting up day to the weekend! ;)
  • I am so sorry you are having to go thru this! I can really empathise with you.

    I think it is a good thing that they are doing blood work to find out if and what type of an infection you may have. They way they can be sure of the antibiotic they give you.

    I will pray that it is something easy to take care of and that when it is corrected you have less pain!

    Try to take it easy and rest! I know it is easy to say....

    Hang in there! Keeping you in my thoughts and prayers!
  • Thanks Jay. How's your foot? Didn't you have a load of minor incidents immediately post op? Didn't we joke you needed bubble wrap or was that someone else? I wonder if bad luck just follows us spineys around or if it just feels that way!!
  • Nel,

    My friend, I am so sorry this recovery continues to be such a burden for you. I had to have surgical intervention from an infection after an L4/5 laminectomy in 2006. It was not fun, but I was amazed how much better I felt (all over) and my surgical area healed so much fast after it was all cleaned out and restitched. It did delay my return to work by 2 or 3 weeks. But it was worth it. I hope this is not a road you have to travel. But if you do, we will all hold your hand in spirit :)

    Best Always,

  • Yea, that was me~we joke that orthos love me , I keep their practice going....I feel like Linus in the Peanuts with a big dark cloud above me.

    I broke a couple bones in my foot and torn the ligament...Hopefully it will heal being taped and in the walking boot! If not, it may have to be casted and I will just cry. I go back and see him in 10 days.

    When I get tired I get so clumbsy and I drag my foot, tripping. The doc did tell me to be careful as did my surgeon. If only it was that easy! I really do need the bubble wrap! If anyone has any ideas.....

    Thinking of you! I feel so bad you are going thru this. At least the weekend is here! I hope it is restful for you! gentle hug! xxxx
  • I thought that was you Jay! Bubble wrap,indeed. I hope you heal correctly and quickly.

    Traci - thanks for your encouragement. I have to say I sort of hope that this is the reason that I have plateaued (sp?) in my recovert. Maybe that is why I am so tired all the time too? I hope that it can all get sorted soon so that I can start seeing more up days than down weeks! How are you getting on? Are you feeling any better? I hope so.

    Have a good weekend all, I plan to catch up on my sleep!
  • Jay- sending more bubble wrap your way. Hopefully it works! No more falls and damage, please.

    Jelly- sorry to hear about the infection. Can you tape gauze rolled up around the infection site? it would keep your clothes off the actual infection. Good luck to you.
  • I suppose rolled up gauze would have been a good idea! Fortunately the antibiotics have stopped the soreness quite quickly and now, while still tender, I can actually have things near it!
    But now it has burst and so my back is leaking again! So I guess I am back to having some sort of dressing on it again. Boo. It will be 11 months since my surgery on the 16th of September - I am getting pretty tired of all this now.
    I have made a batch of spiced plum, ginger and yoghurt muffins to cheer me up!
  • I hope that you are having a good weekend.

    It sounds like things are looking up for you :-)
    as it seems that your infection is getting under control now. The fact that it has burst is probably a good thing, as it will allow the infection to leak out. #:S

    The spiced plum, ginger and yoghurt muffins sound yummy! :P
    I have picked a load of plums and would be interested to try the recipe. I wonder if you could PM it to me. :D
    I hope that they do the job and manage to cheer you up.

    Sounds like you are getting over your latest hurdle. This is definately a long race with lots of different sized hurdles along the way.
  • Nel,

    The muffins sound good, the infection and leaking back, not so much!! How in god's name do you get an infection so long after surgery. The whole suture thing sounds suspicious! LOL I think everything said to me by a member of the medical community is suspicious!! I hope this jolts your recovery back into forward progress.

    I am getting by with the help of medication. 6 different ones to be exact. It's pitiful. I am working and doing what I can do to lead as normal life as possible. I have restricted myself to 10lb limit on lifting and keep the bending and twisting to a minimum. My surgeon just told me to do whatever and limited my lifting to 30lbs. I don't listen to him anymore. I know my body way better than he does. I am being sensible.

    My pain mgt team is great but I don't want to be managed, I want to be well. Mild pain would make my day. Sad, huh?

    Best Wishes,

  • Hi Traci,

    Sorry to hear you are still suffering :(

    I have read about these infections on the net and apparently they can "lurk" inside you for up to two years! Also the hardware gets a rough coating on it so bacteria stick to it - I hope that it isn't my hardware though and is just a stitch. I guess I will know more on Thursday. It is the not knowing what is going to happen next that is getting to me know, that and the itching caused by the dressing ;)

    Keep listening to your body - you are totally right you do know best. These docs haven't got a clue sometimes!

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