Up close and personal

I was asked recently if I’d ever posted any pictures on this blog to document the problems I’ve had with my head over the years. The answer is, no but it started me thinking that perhaps it’s time I should. Words can only convey so much of a story whereas pictures say so much more. So, thank you Alhi for giving me the push that was needed!

My story goes back a long way as I’ve had multiple surgeries on my head as a result of having chronic sinus infections for most of my adult life. About 5 years ago, a decision was taken to insert a stent close to the base of my brain, to drain a recurring abscess in the right frontal sinus. It was at this stage that my husband decided to record my surgical journey with a series of ‘up close and personal’ photographs. Little did we know then of the battle that lay ahead.

This first photograph was taken in 2005, several days after the operation to have the stent inserted in my head. The incision follows the contour of my eye socket and is continued through the eyebrow for maximum disguise. This operation was actually the fifth time this incision had been used to access the right side of my forehead. All previous access had been gained through my nose or upper jaw.

The second photograph was taken 3 weeks later while I was still recuperating from the surgery. I was actually on a sailing holiday at the time when I developed severe headaches and my eyes and forehead started to swell. I knew something serious was going on but I didn’t know what so we made haste back to the hospital. This photograph marks the beginning of my journey with MRSA.

This last photograph was taken following my treatment for the orbital cellulitis. Once the MRSA wound infection had been diagnosed, the stent had to be removed from my head and it took several courses of intensive IV antibiotic treatment, administered over a 3 month period before I was finally discharged from the hospital. I’ve included this picture as it shows how well the incision healed despite the setback.

Less than a year later, the MRSA infection recurred and resulted in the development of chronic osteomyelitis in the frontal bone of my head. Further extensive surgery and treatment has been required in the meantime but I’m going to save those pictures for another day.

22 Responses to Up close and personal

  1. Bendy Girl says:

    Congratulations on such a brave decision Steph, I think you look very beautiful…and love that you can see your EDS almond eye shape in the photos. BG Xx

  2. Annb says:

    Wow Steph what amazing pictures and you’re so right words can only say so much these are incredibly powerful – well done and thank you for sharing that – certainly makes one think twice before having a moan. Your bravery is so humbling.

  3. Grannymar says:

    I know the face as it is today, and never notice the scars when we are talking. It is good to see the various stages along the journey. Keep those eyes smiling. 😀

  4. alhi says:

    Wow, thanks. I can’t believe you have had such extensive surgery to your head and yet the scars are invisible unless you’re looking for them. When I was reading your blog early on I always thought that you must have serious facial deformities (sorry!) but you really can’t see anything from those photos.

    Looking forward to the next batch! All I could post is a hip replacement scar!

  5. Steph says:

    Bendy Girl – Thank you, I really appreciate that.

    Don’t most people have almond shaped eyes?

    Annb – I’m not a bit brave really. To be honest, I think facial surgery often looks much worse than it actually is as most people tend to be fairly sensitive about their eyes. I purposely didn’t tell you guys what’s done to my right eye, to protect it during surgery as I’d be worried someone might pass out!

    Grannymar – If you look closely at the last photo, you’ll see that there are feint scars branching out above (up to my hairline) and below the main scar. These are from previous operations.

    I remember reading somewhere online that someone actually had gold pendants made up to match the shape of their various scars. Don’t ask me why! Do you think you could match mine in fancy beading? 😉

    Alhi – I’ve plenty more scars but I won’t be showing them off. The next set of photos will document how the shape of my forehead has changed with the surgery I’ve had since the above photos were taken.

  6. Grannymar says:

    A rose needs no adorning!

    Did you ever notice I have a scar above my left eye that runs through my eyebrow? It has been there since I was a child and people do not notice because nowadays I have a wrinkle or vertical crease right beside it, that really hides the original scar.

  7. Steph says:

    GM – Nope, I’ve not noticed that but I can recall you mentioning it before. Come on then, spill the beans. Who gave you a black eye?

  8. alhi says:

    I’ve heard of people getting tattoos over their joint replacement scars. The one I would love to get is a zipper up the scar:) Others have suggested a portrait of my surgeon so that when it’s time to do a replacement replacement he’ll be as neat as possible so as to align his own features:D

    So far I’ve refrained.

  9. jenny says:

    Talk about getting up close and personal!
    I think your bravery is astounding and you have gone up further in my estimation, if thats possible???
    You are an ambassador for all people going through tough times,not just medical issues but the ups and downs of life in general. You’re husband looks to have a pretty good resolution in his camera, the photos are strikingly clear and its definitely true, a picture tells a thousand words!
    well done steph,

  10. Achelois says:

    Wow your eyes apart from the colour in the third picture look like mine with regard to ptosis. I have a scar from falling over on the right side of my left eyebrow which is remarkably similar though obviously not for such serious reasons. I was wearing clogs – note to EDS people – do not wear clogs.

    Whoever made the decision to make the scar follow the contours of your face made such a good call. Five surgeries and the decision to use so many and such wide steri strips knew what they were doing with regard to EDS.Your eyes are so beautiful. The colour of your eyes is simply stunning. I use steri strips even on minor cuts these days.

    I had the lovely experience of a camera up my nose and down the back of my throat today mmmm that played havoc with my tender tissues and I had a concern that the camera had not been cleaned since the last patient had it put up their nose! Annoyed the Consultant immensly by making sure of this and asked him to wash his hands! I was ok during the procedure but now my left cheekbone and right nostril are mega mega sore. They said I was brave.. I said that pain is something one is used to with EDS. Sad but true.

    I know for sure that the description of your procedures does not show in these photo’s the trauma you have endured with such stoicism and brilliant sense of humour.

    Take care Steph.

    You are right you don’t give us much of the nitty gritty and I think you are brave and

  11. Steph says:

    alhi – I’ve seen the zip idea used in cartoons. Scars are funny things for the effect they have on people.

    I had a 60+ year old man say to me recently (while recovering from major cardiac surgery)… “Steph, they’ve ruined my perfect body”, and while we both dissolved laughing, I know he was only half joking.

    It takes quite a while to adjust to having a new surgical scar and playing the blame game, is part of that process. When you then consider the consequences of not having had the surgery, you soon learn to accept the new ‘you’ and wear your scar with pride.

    jenny – I can’t do any wrong in your eyes! If you had to live with me, you might think differently.

    My husband works in the photographic industry so I’m well-used to having cameras capturing the moment.

    Achelois – You were saying…”I think you are brave and…???” ugly? stupid? 😉

    Thank you for your kind comments.

    I’m sure all surgeons are taught to make incisions (where possible) to follow the contours of the body. I have large surgical scars on one knee and one shoulder and they were cleverly done in keeping with normal contours.

    I’ve been meaning to ask for a long while and your mention of steri-strips has reminded me… do you have trouble getting all cuts to heal? Only my hands seem to be affected in this way… well, that is until recently, when my head/nose decided it wouldn’t heal. I’ve terrible problems getting my hands to heal if I get a small cut/burn. Cuts gape wide open, are very prone to infection and will only heal if I tape the sides of the wound together. My palms/fingers are markedly creased and the backs of my hands are covered in paper thin scars. Does this sound familiar to you?

    I’m sorry to hear that you had to have your head/throat scoped yesterday. I hope it was in some way beneficial by ruling out/diagnosing a problem? You are absolutely right to be careful about infection control with these procedures. I always make sure to check when a camera/scope is being used on my head, that it’s comes out of steri-wrapping first!

  12. Alex says:

    Hi Steph,

    So great to see who belongs to the voice of the Biopsy Report. I can feel the pain of every scar and the behind the scenes ones too. Sorry I haven’t been around, just spending precious time. You have such beautiful eyes so I am sure that with the marvels of fringes you still look as gorgeous after your more recent surgeries. I think back on my dents with affection now. But I don’t think that I would have been as brave as you and would have opted for the reconstruction anyway. I have a little theory that the germs are within and I can deal with them, I just don’t want them to keep taking parts away. I like my bits! Are you feeling any better? I do hope so. I have got to the point where I just want a patch up job so that I can get back to normal life. I can almost touch it. Sending you my very best wishes and a huge hug x

  13. Steph says:

    Hi Alex

    You slipped in there just as I was posting my last comment.

    I knew you’d enjoy seeing those pictures as your own journey has been similar in so many ways. See my comment above re getting used to surgical scars.

    I’m relieved to find you’re enjoying life (even though back on antibiotics) as I was concerned by your silence.

    I used my last appointment in Notts (last week) to discuss reconstructive surgery for my forehead as I’d never had that conversation with this particular surgeon. When he spelt out what would be needed in my case and the risks involved, I’d no hesitation in finally lying that idea to rest. My most important task now is to stay clear of infection. I’ve still not received my prosthesis (by post) from the maxillo-facial department in Notts nor have I heard any word of the swab result, and my head continues to ooze!

  14. alhi says:

    Steph, I should have said I love my scar! I wear it with pride and am so glad I did it. The night before my surgeon came to see me and warned me it would be a big scar and I told him he could cut me from hip to ankle if it meant he saw what he was doing and it freed me from pain.

    Hope that prosthesis arrives soon.

  15. Baino says:

    O Steph that second photo is certainly a sign that things are not going well for you.
    I still think it’s amazing that such invasive surgery leaves such a small scar. Here’s to the day when you post your beautiful face, scars and all with no pain, no infection and no headaches.

  16. Steph says:

    Baino – That second photo was a sign that things weren’t going well for me. It was taken in July 2005!

    All surgery since then has either been done via a coronal incision (across top of head) or via image-guided endoscopic surgery (through nose). More pics to follow.

    While my face was swollen like that again last summer when the acute osteomyelitis occurred, I certainly don’t look like that now.

    I don’t publish my full name or face on the blog as I prefer to retain some privacy in the medical arena.

  17. Geri Atric says:

    How terribly you have suffered (and still are doing) Steph. But those calm, reflective, clear green eyes are just as I imagined they would be. (‘Windows of the soul’ and all that..!).

    Still crossing fingers that those latest swabs will be MRSA negative – and also hoping that the nose prosthesis arrives soon and starts healing things up. (First time I have ever wished anybody a bunged up nose!).

  18. Achelois says:

    Just found the question – I am afraid I have absolutely no recall on remembering that which I had thought I typed! and no it wouldn’t have been ugly or stupid..

  19. Steph says:

    Geri – LOL There has to be a first time for everything!

    My eyes are actually registered as ‘blue’ on my passport but whenever I wear green (which is a colour I love), my eyes very definitely look ‘green’.

    I’m pretty sure if the swab had been positive, I’d have heard about it by now so I ain’t worried. The rawness in my head isn’t getting any easier so I hope my fancy ‘bung’ turns up soon!

    Achelois – That wasn’t the question I meant! I’ve left a copy of it over at your place.

  20. magnumlady says:

    Well done Steph, you are very pretty.

  21. Alex says:

    Hi Steph,

    I seem to become really slack in the pc department and have been concentrating on decluttering my house! I have made a concious decision to enjoy every moment again. With or without holes!!! I gave myself a major fringe a couple of weeks ago (hairdressing is NOT my forte!) which covers a multitude of up and down days but really understand the swelling. It is how my family know how well I am and I feel like a naughty schoolgirl when I am trying to hide the fact that I don’t feel well because they can all see. I hope you get brave enough to post the rest of your journey photo’s. I will get around to doing the same when I can find enough room after the mess I am creating has been tidied. Let me know how your prosthesis goes. I am not sure of how we will go forward now in my case because of the recurrence of the infection but I am thinking of a nice emerald to fill the gap. Lots of infection free days sent your way x

  22. Steph says:

    magnumlady – I’m not sure I agree but thanks anyhow! Don’t forget, I’m now five years older than when those pics were taken!

    Alex – Thanks again. I intend putting up some more mug shots on the blog tomorrow. Your fringe sounds like a good idea as does the emerald!

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