Well… I finally got to Nottingham to see the surgeon having had my two previous attempts foiled by that damn volcano. As a result of the enforced delay, I had emailed the surgeon in advance, to alert him to the fact that my head still hadn’t healed properly. While his reply was reassuring, I wasn’t convinced that all was well. I’m sorry to have to report that my concern was justified.
When the surgeon looked inside my head, he groaned. He asked me to remind him of how many weeks I was now post-op and his face fell at my reply of three months. “I’ve never, ever seen this happen before”, the surgeon said. Now it was my turn to groan. Those words have become increasingly familiar over the years as things have gone wrong with my health. Delayed healing has now been added to that list of peculiarities.
It wasn’t all bad news though as the graft has actually healed well. However, the surgeon echoed the words of my surgeon at home when he said that “in solving one problem, another has been created”. In other words, the small area of bone which was chronically infected, has healed perfectly thanks to the graft but the donor site for the graft, is now refusing to heal. That’s when I heard the MRSA word mentioned again. A swab was taken for analysis. Personally, I think it’s more likely that the problem is linked to my connective tissue disorder, Ehlers-Danlos syndrome (EDS), but who am I to know?
When the surgeon first heard of my problem with delayed healing (via my email), he was of the opinion that repeat internal splinting of my airway might be required. However, having seen the situation for himself, he changed his mind and decided that one side of my nose should be temporarily sealed off. Apparently, exposure to air (breathing) can dry out the airway to such an extent that it delays the healing process following certain types of surgery. With this in mind, I was subsequently dispatched to another department of the hospital to begin the next stage of treatment.
The ‘expert’ in making facial moulds greeted me on arrival in the maxillofacial department. This department deals with diseases, injuries and deformities of the oral and maxillofacial region and my visit provided a fascinating glimpse into the world of facial reconstruction using prosthetics. I was there to have a simple mould made of the inside of my nose so that a prosthesis could be made to seal off one side of the airway. However, the ‘bomb crater’ left in my forehead following previous surgery, was also of interest to my new friend. I was shown the photographs which were taken of my face at the hospital last year, to record the cosmetic disfigurement. During my earlier consultation with the surgeon, I’d already ruled out going down the road of re-constructive surgery as it’s fraught with possible complications*. I’d no hesitation in telling the maxillofacial expert “thanks but, no thanks!”
My new ‘nose’ will arrive in the post in due course and my surgeon in Ireland will oversee the healing process. I’ve been warned that the prosthetic ‘bung’ will be visible and will give my voice a nasal intonation but it’s only a temporary arrangement and I’ll happily settle for it as long as I’m spared another battle with MRSA. Fingers crossed please that the swab result turns out negative!
* I’m pretty sure this blogging friend would agree with my decision.
I’m keeping everything crossed for no MRSA and EDS’y tissues to hurry up and heal! Good luck Steph Xx
I can almost hear that groan- this must be such a let down for you I’m so sorry. But am I right in thinking that if the graft has healed a treat then the donor site has to potential to do likewise even if it has been a bit slow on the up-take (so to speak!)? So here’s hoping that bung’s a good ‘un!
Fingers, knees and toes crossed for some speedy healing with the new maxie special!
I really hope that it all heals properly for you.
I commented before as to whether you had an visible sign of your problems and you said no. I’m now wondering if you’ve ever posted any pictures of your problem!? Sorry to ask but I have this bizarre interest in all things medical.
Bendy G – Thanks a million but please be careful not to dislocate anything on my behalf!
Annb – My concern would be that another graft may become necessary to get the donor site to heal. I wonder where the graft will be taken from then 😯
Grannymar – Thanks Missus. Would that be a max special like you get in burger joints? 😉
alhi – Thanks for your comment. I confess to having a bizarre interest in all things medical too. I find medical detail fascinating and my one regret in life is that I never trained in medicine. I’d love to have found a branch of medicine which didn’t require the sort of physical stamina that caused me to give up my career in physiotherapy.
I’ve lots of pictures of my face in the immediate aftermath of surgery but I’m reluctant to publish them as I’d prefer to remain anonymous for obvious reasons. I’ll shift through them to see if I can find anything that doesn’t disclose my identity.
The pictures of the internal anatomy of my head belong to the surgeons involved and I don’t have access to them except when shown at a consultation.
Steph i think you should just be presented with your Phd. at this stage. Once again you remind us all about the value of our own intuition and that this above all else must never be discounted. Thank you dearly for that, you’re an inspiration to anyone experiencing the ups and downs of life, and you do so with amazing wit, empathy and verbal fluency that makes me wonder why you ever did physio when you are clearly a budding writter!
You are in my thoughts everyday and like Grannymar I have every conceivable body part crossed for you.
Thanks Steph, would love to see them, although I understand you don’t want to disclose your identity.
I wish I’d done medicine too, to be honest. I finished my law PhD and decided I’d give myself a certain period of time to find a job as a lecturer. If I didn’t find one I was going to do a medical secretarial course. I told a friend that recently and she said I would have been terrible as I would have been telling the patients that the Dr was wrong and to get a second opinion or to try such and such a drug!
My claim to fame is I got a diagnosis in House correct once! not sure if you watch it. Casualty is too straightforward these days!
jenny – If I ever need a character reference, I’ll be in touch! 😉 Thank you for that kind comment.
I find it hilarious to hear that you admire my style of writing as I’m always wishing I could write with the same fluency as I find on other people’s blogs. I’d love to turn my story into a book but haven’t quite worked out yet how best to go about it. If you’ve any advice to offer, I’d welcome it.
alhi – I worked as a medical secretary for a while after my physio training failed but I found it highly irritating not to be more involved with patients. I then moved on to work as a medical research assistant and this gave me one-one contact with patients. I never watch medical soaps, it has to be the real thing for me.
Last summer, I shared a hospital room with three other occupants who were to be my company for many weeks. One of the other patients in the room was a 15-year old girl with mystery symptoms which were baffling the medical team overseeing her care. As the girl’s symptoms were very similar to a problem which my daughter had been diagnosed with 12+ years ago, I realised that the medics had overlooked this possible diagnosis.
Eventually I couldn’t stand watching the girl’s suffering any longer and quietly approached her medical team out of earshot of the patient. I knew I was taking a risk that could easily be misconstrued. I’ll never forget watching the medics eyebrows go up as I put my theory forward. They listened carefully and then the consultant thanked me warmly for my intervention.
He then proceeded over to the girl’s bedside with his team in tow and told his patient that he’d like to run some more tests. It was no coincidence that the investigations just happened to be the same as the ones we’d discussed a few minutes earlier!
I never did get to find out if my diagnosis had been right as I was discharged home the following day but I got a great kick out of the episode nonetheless. If I ever spot that consultant again,I shall take great pleasure out of asking him if my diagnosis was correct.
I shall come back to read comments.
I missed your Birthday – I haven’t read the post either I’m sorry so all I can say is a belated happy birthday steph xoxooxox
Please make sure the ‘bung’ new nose is sterile before you pop it in.
Perhaps the documentation on your delayed healing because of the EDS will help the medical profession in the long run to gain increased knowledge of EDS!
I am hoping that it doesn’t irritate the tissue’s in your nostril, sometimes with EDS something that is supposed to help can tear, cut and bruise! I can’t remember if you said it was made of rubber or not but do they suggest you coat it with vaseline or something more appropriate before you pop it in to help with potential irritation.
You describe all this so stoically Steph, I would be pretty pissed off by now. I know you have no choice but even so I think you deserve a mega treat. A massage perhaps.
I am keeping my bendy fingers double crossed for you and please do let us know how you are getting on.
Take care Steph and thank you for being so kind and supportive it means more than I can adequately say.
achelois – Don’t worry, you have more than enough to cope with at the moment.
The prosthesis will be hollow apparently and very malleable so it should be easy enough to use. I’ve been given a special solution to use inside my nose to help keep it moist and warned to be careful when I sneeze. Can you imagine having what looks like a giant bogey, fly out of my nose and land on the floor 😆
I agree about EDS tissues being easily irritated as I had problems on both occasions when my airway was splinted. As each day passed, the edge of the splints cut a little more into the tissue causing horrible soreness.
Yes, I am feeling fairly despondent at the moment but it will pass. I was treated with the utmost sensitivity and kindness in the hospital and that really helps. It’s having to tell others that things haven’t gone according to plan again that hurts the most.
Oh Steph, you poor thing. Hang on in there. I will keep everything crossed for you.
Thank you Steph – prosthesis – you are now my official word finder (it must be all that Latin you studied). I used to have a wide and varied vocabulary and yet I come to comment and the words are gone. I am fast at touch typing and sometimes I think this is the reason – my fingers go faster than my brain these days. It used to drive my type teacher? mad that I would drop my wrist when I typed and lean them on the keyboard- I didn’t know the reason back then – I know now though – my wrists don’t hold my hands up! I used to play the piano even if I say so myself quite well and would exasperate my piano teacher that I could span far more than an octave despite dropping my dratted wrists! I do this – thing a lot these days instead of punctuation. How lazy am I.
I know exactly what you mean when you say its saying again that things haven’t gone as planned. I expect you have learnt to pretty things up a bit for the benefit of loved one’s. You don’t have to do that here.
A little bit of me wants you to sneeze on an obnoxious human being somewhere! Pay back – EDS Style.
Jokes aside – I hope the prosthetic absolutely no way causes any sort of irritation. Glass half full style – getting the job done asap.
magnumlady – I’ll already feeling more upbeat today, thanks as I’ve recovered from the exhaustion of a very long day in the UK.
No word on the swab result as yet but I will update everyone as soon as I hear the outcome. My gut feeling is that it’s negative for MRSA and I can only hope that I’m proved right.
achelois – Prosthesis is what the surgeon called it and the guy I was sent to in the maxillofacial department, was known as a Prosthetic Consultant. The ‘bung’ is my word 😀
Now, about this sneezing idea… had you any particular obnoxious human being in mind or can I choose my own victim? 😉
OOhhh you get to choose your own!!!!
Everything crossed. Am optimistic your ‘gut’ feeling is right Steph. Reckon you are due a bit of good luck!
Aww Steph I have everything crossed at the same time and all the time.
Achelois – 😀
Geri Atric – Thanks for believing in me. If there’s one thing I’ve learnt over the years of medical problems, it’s not to waste time worrying over possible outcomes. What will be, will be but having said that, a bit of good luck would make a nice change!
Baino – Thanks. I still await news from Notts and as this weekend is a bank holiday in the UK, I may be waiting a while yet.
Just been catching up with your news.
What an ongoing hard time you are having. Hope things go well with the next bits.
Thinking of you lots and keeping my fingers crossed too.
Zoe – Cheers! Lovely to hear from you.
I’m still awaiting news from Notts. They had a bank holiday in the UK on Monday and when I emailed the hospital yesterday (Wed), I got an ‘out of office’ reply so they are obviously still in holiday mode!