Farewell to my Surgeon

Went back to hospital today for my post-op follow-up with my surgeon (yes, I know I was only there on Tuesday, to see my Endo - but that's how these guys roll I guess)

I was called in to the consultation room by his registrar, but then Mr S himself came in to have a peer at my neck.

They both stated that they thought it looked good, and was healing very well.

Apparently its perfectly normal to have good days and bad days, with regards to stiffness, pain and the tight feeling...that its all part of the healing process, where its all healing internally at different rates. And it'll probably continue to feel like this for a good while yet.
The remaining swelling was minimal, and the scar site itself they both declared looked excellent.

They reiterated that I need to keep the site protected from the sun at all times. That it will take up to a year before the scar heals completely and becomes strong, but that within a couple of months it should be barely noticeable.

I was given the all clear to start lashing Bio Oil on it, and we all bid a fond farewell to each other as my surgeon declared that as far as he was concerned I was all finished with his ENT department. But, should there be a further complication down the road (highly unlikely), all my Endo had to do was pick up the phone and Mr S would put me straight back on his patient list.

I thanked him profusely for all he had done for me. The more I looked into the horrors others have experienced after Thyroid surgery, the more truly appreciative I had become of my surgeon and his skills. (I did a bit of Google stalking - and have to say he comes extremely well recommended and appears to be very highly respected in his speciality by his peers!).
Post-op I had no numbness, no tingling. No obvious deterioration in my voice or vocal chords (other than initial soreness form being tubed during the op). No problems with my parathyroids, or calcium levels, either temporarily or permanently. And none of the other awful things that are known risks of this type of surgery, which have happened to others, and which my Fuzzy Thyroid Brain won't allow me to recall right now...

Oh, and one more bit of good news...they send a sample of the goitre/thyroid gland for a histology report as standard during the op...and mine came back *BENIGN*. Thyroid Cancer is one of the most common reasons to do a total thyroidectomy, but was never in question in my case. My thyroidectomy was due to my toxic multi nodular goitre, which, in addition to raising merry hell with my thyroid levels, was closing on my windpipe and slowly strangling me....but even so, hearing the word *benign* will surely always give someone a little lift!

Farewell Mr S, you're diamond!

Hospital food, and TV wars!

[posted retrospectively & not necessarily in order - 1st June, day after the op]

At some point in the afternoon I was moved to a semi-private room, where I shared with another girl. She'd just come back after developing some problems a week after tonsil surgery.
She proceeded to hog the TV remote control, stuck it on mute, then when Desperate Housewives came on later that evening I had to endure it at top volume (when she was discharged the next morning, the very first thing I did was grab the remote control from the side of her bed!)
I was still too tired & spaced to bother with resurrecting any sense of fairness over the TV availability, so I just plugged the iPod into my ears, and watched the moving pictures until Mum and Hubby turned up during visiting hours.

I still wasn't eating very much. I'd forced down a yogurt for breakfast, under great duress from stern-looking nurses. I accepted some soup for lunch, but couldn't get past one mouthful.
Don't get me wrong, I know hospital food doesn't generally have a great reputation world-wide, but I was pleasantly surprised by the variety, tastiness and quality of the hospital food I was given. When my appetite did return I really enjoyed each and every meal. But for now, I just wasn't hungry.

At some point during the morning they emptied the vacuum pump on my surgical chest drain. Overnight it had sucked lots of blood & goo out of me, and I was now becoming more aware of this hose sticking out of the front of my chest. They kept calling it a tube, but it certainly felt like a ruddy great hose! And it was really starting to be a very sore pain-in-the-arse. I had a little clip on the container, so when I went off for walkies ( the nurses were adamant that I should be marching laps of the hospital on a very regular basis - what happened to rest & recuperation?) I could clip the vacuum container-thingy onto my clothing...and thus I could march about, with my lovely container of blood and goo on full public show, hanging off the lapel of my dressing gown...nice!

My surgeon came around at some point in the morning, to tell me how pleased he was about how it had all gone. He apologised for the size of the scar, but said it was as small as he could manage, given the size of the goitre.

Roughly every 6 hours, day & night, a vampire came visiting (different one each time) stealing lots of blood from my poor right arm, and disappearing off with a swish of their cape.
On the strength of these visits I was kept informed of the fact that despite being a Grave's Hyper patient my calcium levels hadn't dipped at all, but that they would continue to monitor them, We all concurred that this can only be due to the sterling work I had been doing with my Endo's Senior Registrar over the last few months, chipping away at my carbimazole dose, ever so slowly, so that for the first time in over 2½ years my blood levels not only come down into range, but had also stayed in range for over 6 weeks. My surgeon had explained to me that the more Hyper I was at the time of the operation, the more my calcium would crash as my body went into instant withdrawal. So thanks to Dr. R and his endless patience and gentle ways, we were pretty much as good as it gets on the day of the operation. But also many thanks to my surgeon, for having a steady hand and not harassing my parathyroid glands whilst he was in there digging about with his scalpel, as that was another common cause of a calcium crash.

Late in the afternoon new girl moved into the bed next door. She was brought in with stomach pains, and put on our ward for observation as there were no beds available on the general wards. We got on great, and came to a mutually beneficial agreement over the TV Remote. She made me laugh so many times, and listened carefully when my mother joined the nurses in nagging me to go walking. She made it her mission to take me off for random walks around the place, as and when she'd decided I'd been laying around too long. If you ever read this, and recognise yourself as that girl, well, thanks J, you were a star!

Meanwhile mum and hubby, when they weren't being doting relatives beside my bed, and listening to my alternating mumbling, croaking & whingeing, were amusing themselves between the 2 shifts of visiting hours, by shopping lots in the local shopping centre and sampling all the muffins in the coffee shops they found!

A friend of mine worked on a neighbouring ward, so she kept me sane too, by popping in whenever she got a chance to make sure I was OK and had everything I needed. She helped break up the long, slow mornings between drug rounds, vampire visits and blood pressure checks. Thanks N, you rock too!

And just for the gore-fans amongst you, here are some pics of my neck and chest drain, taken less than 24 hours after the operation...absolutely no idea what I had to smile about....I was sore, woozy, uncomfortable & grumpy - it must have been a morphine-induced smile, is all I can say! :)

D-Day

...or should that be TT Day?

Either way, today is the day....shortly we head off to hospital for my Total Thyroidectomy, and if all goes to plan, by the end of the day I will have no thyroid gland at all ...nada, zero...and my goitre will be history [yay!]...if they follow my wishes I hope they drop kick that mo-fo into the bin, and spit on it before they close the lid...alas, whilst I'd love to be the one to do that, I imagine I'll still be fast asleep in General-Anaesthetic-Land

Mixed feelings....but, also dead set that this is the only way forward for me....the gland has got to go!

Absolutely no idea whether I can bring the laptop in with me, but certainly not considering bringing it on 'Op Day'...perhaps my mum or hubby can bring it in tomorrow if I feel well enough.

Am I scared? You betcha!

Wish me luck!

No Room At The Inn....er...Hospital

I've already chewed my finger nails down to the knuckles...I've got nothing left to chew on!

So we rang the ward at 11am this morning, as instructed by my Admissions letter, to check that my bed was available for me from 2pm this afternoon....and guess what?

Yup, no bed.

I have to say, I was pretty hysterical to the poor nurse on the other end, after I had digested this information, and had to hand the phone to my mum to deal with it all.

We were asked to ring the ward back after 12pm, so we could discuss it further with the Ward Sister, and find out just what the heck was going on.

Sister explained that, although it didn't feel like it at the time, I was in fact *the* lucky one! She told me to 'fast' (no food OR drink) from 10pm this evening, and to present myself to the Admissions Office at 8am tomorrow morning, when I *would* be admitted, she personally guaranteed it.
She told me she had 16 people looking for space on her already-full ward today, and had told the other 15 to simply 'fast' from 10pm, and then to phone in at 8am in the morning to check on bed-availability. I was the *lucky* 16th, who was on her list as a *priority*, and who was told to come in at 8am tomorrow.
She said, if it made me feel any better, to at least be happy in the knowledge I could sleep comfortably in my own bed tonight before my operation tomorrow, and not have to spend the night in a busy surgical ward, waiting for the inevitable - she had a point there, I suppose.

But its all so frustrating, and having worked myself up about this all so much in the last 24 hours or so...at least if I was in my uncomfortable hospital bed, in my designated ward, then at least I'd know for sure the operation was going ahead tomorrow. Now though, although I had her personal guarantee that I *would* be admitted in the morning, all the while I wasn't actually in hospital there is always going to be that little nagging doubt in the back of my mind that they may still turn me away in the morning, and send me home again...

Will I sleep well tonight? Highly unlikely...

Stones & Scalpels

Down another 1lb this week, which is OK.
Two 1lb losses in 2 weeks, and since starting these were the only two weekends I've so far spent at home, not drinking alcohol and not eating semi-crap...go figure? Clearly if I go out drinking & carousing over a weekend I lose more weight? Good thing I've got a 3-day music festival coming up at the end of the month!

And, I hesitate to say it, but that's my first stone gone...even though I promised myself, for my own sanity not to count this in stones this time, but instead to stick to 10lb segments...but, well...its my first stone...woo!

In other news, regarding my thyroid...the appointment with my surgeon *was* my pre-op consultation, and I'm now officially on the waiting list, and due to complications with my windpipe being compressed the surgery is supposed to be sooner rather than later. I will be admitted a week beforehand because my thyroid is so toxic that they have to get my levels as near to perfect before the op, otherwise the complications afterwards will be more severe, yikes! So, guys & gals, it could be next week, next month or next year...but more likely to be within the next few months.
I mentioned my GA fears to him, with regards to my weight etc...but he said he's operated on 'larger ladies' with no problems, and the operation really does need to be done ASAP because of the windpipe problem so they are unwilling to let me go too long.
Still, I'm going to keep plugging away with the Xenical as it really is the only thing that has worked for me for years. And I'm now "Double Wii Fit-ing" each day, to really go to task on the cardio and aerobic exercises....overweight or not, I want to be as heart-fit as I can be before the anaesthetist plugs me with happy juice!

As you know, I have Grave's Disease/Hyperthyroidism, complicated by a large, toxic, multi-nodular goitre...however I have only just learned that this pesky goitre has compressed my windpipe down to less than 8mm in diameter!!! Hence the problems I have with breathing, swallowing and snoring like a "pig with bronchitis, on a freight train" I feel I surely should have been informed of this after my CT Scan last summer...I distinctly recall my Endo saying the scan was fine and everything was good...ho hum!

So there you have it...my weekly update...the weight is still coming off, and the surgery plans have been brought drastically forward!

And I'm Officially On The List!

Well folks...if you missed my status update on Facebook yesterday, it looks like its all been brought forward...and I'm now officially waiting for my operation date Here in my grubby mits is a pink carbon cop of my Admission Request Form!

I should have posted here last night....but I'll confess I was a total emotional wreck yesterday and my head was all over the place....when a friend rang me yesterday to confirm my attendance on today's Festival Promotion jaunt I think I scared him silly, poor chap...I think he thought I was dying.
Its not as if I didn't know I was due to have this operation, I just thought I still had another 9 or so months to get used to the idea (as well as get thinner/fitter for the General Anaesthetic!)....but no, yesterday was officially my Pre-Op Consultation, with my surgeon leaving me with the immortal words, "next time we meet will be on the operating table"...so I guess I went into a kind of shocked state...and I couldn't honestly tell you what I did most of yesterday afternoon, apart from cry a lot

Apparently I'm now considered fairly urgent, as my goitre has now compressed my windpipe down to 8mm diameter (hence the freight train snoring, ultra hoarse voice and total inability to breathe if my head is held in certain positions)...and I was told that if it compresses the windpipe any more then they will have to something drastic & gory to open my throat up to allow me to keep breathing....which I have to say sounds fecking scary! And as my surgeon said, if they're doing that, then they might as well get on and do the thyroidectomy...and so he doesn't want to wait until its that serious....i.e its serious enough right now, without waiting any longer for it to inevitably get worse.

And also, as my thyroid is considered toxic...I will also have to go in a week or so earlier, in advance of the normal admitted pre-op hospital crap, so that they can forcefully block my thyroid from working. To reduce the 'withdrawal' my body will apparently go into almost instantly once the thyroid gland is removed, they need to get my TSH levels absolutely perfect (or as close-to as it will allow them), and sustain the levels there for a few days...and that's using meds & methods not available on prescription, presumably nasty IV stuff

After the op they won't release me until my calcium levels are stabilised and/or controllable...apparently calcium is the very first thing to react and go tits-up instantly once the gland is removed. He said normally this is 2 or 3 days, but one patient he did last year was held in for 6 weeks because they just couldn't get control over her calcium levels.

I have absolutely no idea how the system works...but I presume, because of the co-ordination required between the ENT dept and the Endo dept, with regards to getting me in early and getting my levels stable...that hopefully means I won't get my op 'bumped', so once I'm in I'm staying...if that makes sense?

I have a routine appointment with my Endo on the 20th April...so if I haven't heard anything before then I'll hopefully be told more then, and maybe given a time-frame.

My surgeon just said he was aiming to do it ASAP...but I don't know if that means next week, next month or next year

So, surgery then...

I'm finally on the waiting list for a Total Thyroidectomy.

I was not meant to have my Pre-Op consultation until December, so was rather surprised when I got an appointment with my surgeon sent to me for today...I went along to see what he had to say, and basically, as per my most recent scan, my goitre has now compressed my windpipe to around 10mm and so they are unwilling to wait another 9 months (which was supposed to be *my* get fit/get thinner 9 months! ) because if it squeezes my windpipe any more they will have to take drastic action and do something nasty to my throat so I can continue to breathe....I was still shocked at hearing the first bit to be honest, so didn't take *all* the gruesome details in, sorry.

No idea how soon or otherwise the op will be, but it was indicated that it will be sooner rather than later, and apparently I need to be in for a week before hand, because my thyroid is incredibly toxic at the moment, so they will plug me into to some intra-venous happy juice, and forcefully stop my thyroid from functioning, prior to the op...which is meant to help reduce any nasty problems post-op.
With regards to post-op, the surgery will apparently cause me to go hypocalcaemic pretty much instantly...so I will then have to stay in until my calcium levels are back under control, either naturally, or by then taking a calcium supplement for the rest of my life, in addition to the thyroid replacement meds I'll be on for the rest of my life (ho hum!)
I'll also have a drain tube put in for at least 2 weeks afterwards apparently, and won't be able to talk for a while (yeah, yeah, yeah...hopefully it won't stop my typing though! )

Hubby did a YouTube search for thyroidectomy surgery at work this afternoon....and strongly recommended that I *DON'T* do the same!
He also suggested I avoid films such as 'Awake' and 'Flatliners' until after the op too....he's SO thoughtful, ha ha!

I also need to confess that I've never had a general anaesthetic before and I am utterly, utterly bat-shit shit-scared

ENT Surgeon Appointment - 13 July 2009

Out of bed early, after an exhausting week away. I wake up dizzy, and continue to have short dizzy spells as I got about my morning chores. A little perturbed I check my blood pressure. It comes in at 144/75, systolic is a little high at 144, but diastolic is good at less than 80...neither reading would explain the dizzy spells, so I put it down the last remaining dregs of this head cold I've been suffering from.
A quick bath, then I head up the road. I'm getting used to the alarming amount of hair that comes out when I wash my hair, regardless of the amount of conditioner I use...but its still distressing to see all that lovely hair just falling out all over the place, with very little encouragement. I often get my husband to detangle my hair after a bath/shower as I just find it too upsetting. Its easier to close my eyes and let him deal with it...out of sight, out of mind.

Its over an hours' drive to the hospital and all the way I'm chasing the ETA on my Sat Nav, inevitably I'm running late and getting stressed.
I land at the receptionist's desk at 10.57am, for an 11am appointment...and proceed to be ignored for 5 minutes as the two receptionists go about their business, discussing last night's TV with passing nurses, and basically appearing to do all they can to avoid dealing with me. I'm wondering if I'd mistakenly worn my invisible jumper when one of them deigns to notice me.
The checking-in process completed I take my seat, thankful that I'd remembered to pack a book into my handbag.

Two hours later and I'm regretting not putting two books into my bag, as I turn the last page on the book I started just two hours previously.

I sneak out of the open door for a cigarette, leaving my name with a fellow patient, also waiting patiently for their appointment, also two hours after their allotted appointment time.

Finally, 2½ hours after my appointed time of 11am I am called in to see Dr H. The first thing he asks me is if I've had my CT Scan yet. Sadly the reply is negative, and I can see from his expression that this meeting is kind of pointless without the CT results. We joke good naturedly about hospital efficiency. I point out that I am returning to the hospital in one week's time to see my Endocrinologist anyway, and wouldn't it be great if the CT Scan was scheduled for the same day, to save me an extra trip into the hospital...and we both laugh at this highly unlikely scenario. That would make far too much sense to whomever is responsible for scheduling such things.
Undeterred by my lack of CT Scan results, he proceeds to poke and prod at my neck anyway. He has a good poke in my ears (heaven only knows why?), pokes his torch up my nose....(well I suppose as an ENT Surgeon he wants to get his money's worth from any patient), before sticking his hands around my throat again for a further squeeze. He squirts yucky tasting stuff up my nose and assures me that my nose and throat will shortly go numb. I can taste ammonia, he tells me its benzocaine based....either way it stinks, and tastes horrible as it slides down the back of my throat....but it isn't half as unpleasant as the huge long scope he then pokes up my nose, and pushes down my throat. Quite a strange sensation....I don't think my throat is as numb as it should be, I can feel every centimetre of it and its at least 30cm long. Feels odd to talk to him, and answer questions, while this huge long piece of cable is sitting at the back of my throat, by way of my left nostril.
After it is removed my nose runs uncontrollably, and the attending nurse kindly passes me a packet of tissues. She advises me not to drink or eat anything for at least an hour, until the anaesthetic properties have worn off.
Dr H ponders what he has seen and announces that he thinks the Goitre on the right side has spread under my collarbone, and that this will make extraction more complicated. We will know more and have a clearer picture once this damned CT Scan has been done, but for now all we can do is speculate. Mysteriously he tells me that if it is down under my collarbone he won't be able to perform the surgery here....I assume 'here' means this hospital, but I'm not too sure what this statement means. he goes on to discuss other things and I forget to ask him to clarify this statement. I must remember to ask my Endo next week if he has any idea what this means.

Then the discussion turned to weightier matters...if you'll pardon the pun. He expressed concerns, on behalf of his anaesthetist, regarding my weight, and he stated that he'd like me to lose a minimum of 6 stone (preferably 8 stone) before he'd consider passing me over to his anaesthetist...I guess this means he won't be scheduling me for surgery either, until I lose this weight....regardless of my CT Scan results, and regardless of my thyroid problems. Oh, and he'd like me to ditch the smoking too...well that's a given, and is high up on my to-do list as it is.
I joked that I'd set about starving myself between now and my next appointment and he did have the good grace to apologise in advance for his crassness, as he quipped that "no fat people came out of Belsen".

I go back to him in 2 months time....14th of September to be precise, and I will try my hardest to have lost at least a stone or two by then. Oh, and I'll be pi**ed off if I haven't managed to give up smoking by then too. If I haven't had my CT Scan by then, well I guess it'll be yet another wasted appointment....got to love the Irish Health System....

Endo takes my Goitre seriously!

When I was getting my bloods done the other day, in preparation for today's Endo appointment, I mentioned to my doctor that nobody at the hospital had been too concerned, or even interested in my goitre, no matter how often I mentioned it. I also showed her how much the right hand side had swollen up in recent weeks. She laughed and said "one look at that, and they'll be *VERY* interested this time, trust me!"

She wasn't wrong.

Once again, I was given a consultation with another fresh-faced young intern, but I didn't stay with him for long. One look at my goitre sent him scurrying for the Consultant Endo, and the rest of my appointment was with the boss himself.

He has decided to refer me for a CT Scan to check out the goitre, and also to an ENT consultant...just to make sure they have that covered. He mentioned the possibility thyroid surgery again, but also reminded me of the RAI option - essentially the decision is mine, I just need to do my homework and make the decision, if it comes down to it, but in the meantime it was worth setting the wheels in motion in case I decide to opt for surgery. I guess the goitre is what is worrying them, more than than my malfunctioning thyroid. He reassured me that it all still could come under control with the meds, and all this is purely speculative, but bearing in mind waiting lists for referrals etc we may as well go ahead and make a start.

My bloods are still out, my TSH is too high, and my Free T4 is too low - indicating that I'm very firmly in the Hypo camp right now. So we've dropped my Carbimazole from 30mg/day to 15mg/day.

RAI or Thyroidectomy?

Hoping this remains a hypothetical question for me, but I'm curious to hear other folks opinions on it...

Its becoming more and more clear that my thyroid gland is becoming more and more unstable. The latest set of bloods have me very hypO, even more than I was a couple of months back.
TSH is 18.3 range 0.15-3.2
my FT4 is apparently "below absolute low"...which is interesting, surely the lab should be able to detect it somehow, no matter how low it has dipped.

I've had noticeable goitre on the left side of my neck for years, with nothing to show on the right hand side. But, suddenly, in the space of 7-10 days the right hand side has now swollen to larger than the left, and is incredibly uncomfortable...breathing, swallowing, neck movement, all compromised.
My neck looks like a bullfrog, and my voice is so hoarse I sound like bullfrog too!

Due to see my endo on the 19th of May, but my GP has advised me to think about the fact that my Endo will now very likely suggest either surgery to remove it completely or RAI treatment.
For the record, I'm 35, married, no kids, but would like to think about having children in the reasonably near future, if I can only get this thyroid to behave itself.

So, throwing this 'hopefully' hypothetical question out to blog-land...if you were given the choice of surgery to totally remove the thyroid gland, or RAI treatment which one would you go for, and don't forget to say why?

Thanks in advance

A Simple Case of Cellulitis

It all started off so innocently. My husband and I went out for a rare night at the cinema. Whilst he stocked up on popcorn I headed off to use the toilet. Whilst sitting on the aforementioned convenience I scratched idly at an insect bite on my shin.

Fast forward to the following morning, and my whole shin was itchy, with no sign of what I had innocently assumed was a midge bite. We had a day of activities planned, and undeterred, we headed off with a quick pit stop at a local pharmacy to pick up some antihistamine cream.

By the end of the day my leg was causing a lot of pain, had swollen up enormously, and really starting to look quite nasty...and familiar!

I'd suffered with a bout of cellulitis following a crush injury during the 90's and my lower leg was looking and feeling just the same as it did then. We called the Out-Of-Hours Doctor Service and my guess was proved correct. The doctor confirmed that I had cellulitis, and I was promptly put on the corresponding course of hard-hitting antibiotics. During the consultation I really hit it off well with this doctor and I found her very approachable and easy to talk to. I mentioned the goitre on the left side of my neck and she immediately tapped several vials of blood from my arm and asked me to make an appointment with her at her own surgery in a week's time.

Thus commenced my present thyroid journey. I have had brief forays into the world of thyroidism in previous years, resulting in a very scary session with a so-called *specialist* 4 years previously, which had almost driven me to bury my head in the soil and totally ignore any further symptoms....but now I had seen the light, found a doctor I could work with and most importantly, a doctor I could *talk to* and discuss things with on an even keel...as opposed to be talked at and being told how I was feeling. I may discuss my previous experiences in trying to get diagnosed, at a later date, but for now we'll concentrate on the positive action we're currently taking....me, my husband and my doctor! A Team At Work!