Moving the goalposts

As we await the mother-of-all budgets to be announced in early December, I had hoped to be able to bring you a good news story this week but sadly, that’s not to be. Having enjoyed a summer free of infection in my head, it seems that the holiday is now well and truly over. I’m back on the treadmill of chronic infection once again.

Within 2 days of finishing the antibiotic after the recent acute infection, the congestion in my nasopharynx began to recur and a foul discharge seeped into the back of my throat. I requested an urgent appointment with my surgeon and was seen in his hospital clinic last week. Following a nasal endoscopic examination, the surgeon was able to identify the cause of my symptoms. While my forehead remains completely free of infection, pus could be seen dripping from my sphenoid sinuses. A swab was taken for analysis (culture and sensitivity) and an air of despondency descended on the room.

My surgeon confirmed what I already knew which is that the donor site (one side of nasal septum) used for the graft procedure last February, has still not fully healed. This failure to heal is more of a nuisance than a cause for concern. The infection in my sphenoid sinuses is a new development and is definitely a cause for concern as these sinuses are near the middle of the skull and are the most inaccessible of all the paranasal sinuses. They are also bordered by more vital structures than any other sinus.

While recovering from the surgery in Nottingham earlier this year, I developed severe headaches which were different to anything I’d experienced before. The pain was deep behind my right eye and radiated into the top of my skull and to behind my right ear. I was sent for a precautionary MRI brain scan which came back as normal so a ‘wait and see’ approach was adopted. The headaches gradually petered out over the summer months only to return with a vengeance when I developed the recent acute infection. In hindsight, I now realise that those headaches were classic symptoms of sphenoid sinusitis which subsequently developed into an acute bacterial infection.

The surgeon is now of the opinion that the radically altered internal anatomy of my head, has left my sphenoid sinuses more prone to infection. As the normal drainage channels in my head have been surgically removed, the ostium (opening) of the sphenoid sinuses is now exposed to a greater risk of bacterial infection. I could hardly believe what I was hearing.

I left the consultation armed with a prescription for further antibiotics for when needed. My normal ‘glass half-full’ self seems to have deserted me while I try to digest this bombshell news. All I can tell you is that if feels like the goalposts have just been moved again.

10 Responses to Moving the goalposts

  1. Grannymar says:

    So that is why I have not heard from you for over a week.

    Big hugs winging your way.

    • Steph says:

      Thanks Missus.

      I’ve been quietly digesting this new information while also researching the best way forward. Writing this post today has really helped me to regain some perspective on the situation I find myself in.

      The congestion in my head has been slowly deteriorating since seeing the surgeon so I’ll probably have to seek further advice again shortly.

  2. BendyGirl says:

    Oh Steph. I’m so sorry to hear this. For different reasons I totally understand the moving goalpost feelings. Sending you much love & best wishes for as easy a recovery as is possible. BG Xx

    • Steph says:

      Bendy

      Thanks. Considering you’ve got more than enough of your own problems with ill-health right now, I really appreciate you taking the time to commiserate with me.

      I’m sending huge healing vibes your way.

  3. Lily says:

    So so sorry to hear this.

    Sending you very best wishes, Lily

    • Steph says:

      Thanks, Lily

      I know you understand the predicament I’m in and that’s a great help to me. Apart from telling my husband, this blog is the first place I’ve turned to for understanding since seeing the surgeon and it’s really beneficial to have this outlet to air my frustration.

  4. Annb says:

    Oh Steph I’m gutted for you. That’s the whole problem with chronic illness – the goalposts are on wheels and they zoom around the pitch constantly. Most of the time glass-half-full people like yourself adopt a fight and flight mode because you don’t have the choice of doing one or the other you have to both stand and fight AND run after those ever-shifting goalposts.

    Sometimes I let the goalposts run themselves out while I sat and regrouped, although to be honest I never consciously made that decision – exhaustion usually did it for me.

    You’ve been dealt a cruel blow – you don’t have to react immediately – you don’t have to plan your next move – you don’t have to fight or flight right now. Right now you just need time to absorb the wallop that goalpost gave you as it whizzed by the back of your head. Sit and weep if you need to. A plan will emerge from somewhere – but you don’t have to be the one to come up with it.

    I’m thinking of you and sending you lots of ‘hairy hugs’ from the west. And remember ‘this too shall pass’.
    Take care,
    xxx

    • Steph says:

      Ann

      Cheers. It lovely to know you understand the moving goal posts phenomena. I’m still in shock that they’ve moved out of reach again but having said that, my fighting spirit has been rejuvenated by everyone’s supportive comments here.

      I think one of the worst things about any set-back, is having to break the news to family and friends. You guys don’t deserve to have to hear of this set-back any more than I do. I think you’re absolutely right about not planning my next move as I think that circumstances will probably dictate which way I turn for help when it’s needed.

      In the meantime, thanks for lifting my mood with the hairy hugs 😀

  5. Achelois says:

    I don’t know why I missed this but I did so am commenting back to front. Perhaps its because I have been a little unwell and not concentrating in my reader.

    I have read your latest post and feel this is unfair, enough now. its time you had a break from all this. Headaches right now I empathise with as I don’t often get them but this day i have the mother of them so I don’t want you to have pain, infection or anything other than good health. If you aren’t having that I can will you with everything I can muster to get better so that is what I am doing. Whilst lying down trying not to feel sorry for myself. So reading this has helped me to stop doing just that. For you my bloggy friend put up with enough. Enough is enough and you my dear deserve a break.

    xoxoxox

    • Steph says:

      Achelois

      Thank you for this. I’m especially touched that you still have the will to empathise with me when you have your own fight on your hands. I’m in good hands, don’t you worry.

      I’m much more concerned about you and whether or not your antibiotics are working. I’m quite sure if anyone else was in the kind of pain you’re in at the moment, they’d be in hospital. We EDS’ers are used to pain but remember, this is not skeletal pain you’re dealing with… it’s pain due to infection… and that should always be medically monitored and especially, given the location of your infection.

      Please promise me you’ll seek help today if you’ve not improved overnight.

      Thinking of you
      Steph x

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