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Adios adenomas, one, two and three!

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Adios adenomas, one, two and three!

Post by Tigerlily on Mon Dec 15, 2014 4:53 pm

Hi Everyone

Thanks so much to you all for your cats, caring, love, GBH, reindeer, flowers, and little green men to get me through my PTH op which went like clockwork at the Hammersmith. Their NHS admin is erratic, to say the least, but when you get slotted into the pre-ops and operation programme it all goes like a well-oiled machine.

I travelled down on the train the day before, checked into a visitor’s studio room the next door along from the main entrance (complete with shower, microwave, crockery/cutlery, and TV – contact “Residential Bookings”, I have the number), dropped my stuff off, went to find the ward, checked I was on their list, then had the afternoon free to go and see Liberty’s Xmas decs and the Oxford Street lights! I picked up an M&S ready-meal which I microwaved in my room later before turning in for an early night.

I got up at 05.30, showered leisurely, packed up and dropped the room key back to the office then presented myself on the ward at about 6.30h. I was speedily processed by the night staff who told me I was second on a list of 3 ops and would defo be done before lunch. I changed into a gown and my own dressing gown and sat in the Day Room and read for an hour or so. The anaesthetist visited me first for all the pre-op checks and I told her about my small veins which collapse as soon as a needle goes in, and the fact that I then turn green and sometimes pass out. She said they would use a baby-sized needle to start with and then when I was under the anaesthetic they would change it for a larger one. I found out later that they also did the laryngeal nerve check when I was well sedated, which was just as well as I was unable to do it without sedation later when they wanted to check the nerve again. The next to visit was Dr Costas on FP’s team. I had to grill him somewhat as to what they planned to do during the op. He told me that they would take out the lower left enlarged gland that had been seen on US, then put in the intra-operative PTH probe. If the PTH level had reduced by 50% or more, then I would “be cured” (his exact words).

I found this rather worrying as I had been having odd “tight” feelings on the side of my neck opposite to the side where the adenoma had been seen on US. What I was feeling had been described by one (expert) radiologist as a “benign reactive lymph node”, but he had not given any suggestion as to what the lymph node might be reacting to. The Addenbrookes US (more sophisticated equipment than the first one at my local hospital) had not even seen this reactive lymph node and it wasn’t mentioned in their report. Neither was it seen/reported on in the Hammersmith US report, and the Dr Khan who did the Hammers US was very thorough and did check out my parotid and salivary glands at my request in case it was these causing the problem, but they were deemed normal.

The reason I was worried about the words “you’re cured” is because I had heard that once before from Paul, FP’s Registrar, with whom I spoke on the phone when they called with the cancellation appointment for the op. I asked him if FP would do a 4-gland investigation, and he trotted out exactly the same words as Dr Costas about the intra-operative PTH measurement - and if it drops by 50% when we look at the adenoma we know you have on the left side, then “you’re cured”.

So here I was, about to go in for surgery with the prospect of only one side being looked at if the PTH dropped sufficiently. (The thought of “boys with toys” came to mind ...) I had to really insist that Dr Costas take on board that I had other tightness and odd feelings on the other side of my neck to the adenoma, and that I would really wish that side to be investigated as well. In the end, I had to say that it wasn’t important how large the scar was, just that I wanted all 4 glands looked at. So NOTE TO OTHER FORUM MEMBERS this is an issue that needs clarifying well before you’re about to jump up onto the hospital trolley, as I was.

After my chat with Dr Costas, after which I had to sign to say that I accepted I might come out of all this with only half a thyroid if that’s where these little burghers had embedded themselves, I was then shown my bed, stowed my stuff in the bedside locker and followed my nurse to the pre-op room carrying my own pillow!

I have to say that my biggest bouquet goes to the anaesthetist and her team. They swarmed all over me chatting and smiling and I was out like a light before I knew it. That’s my kinda party!!

I don’t know how long the operation took but the same girls were there for me in the recovery room and wouldn’t take me back to the ward until I’d thrown up the rest of the previous night’s dinner (sorry!) and was calm and collected again.

Back on Ward A8 I tried to sleep for the rest of the day sitting almost upright in bed (required, but not easy) and spent the night in the same position getting a bit of sleep but being wakened regularly for observation and blood tests. The shining light in a long slow night was Dr Fiona McClenaghan on the night shift whose gentle and compassionate care brought tears to my eyes.

I tried to eat a yoghurt the next morning, but it was a bit too soon and the after-effects of the anaesthetic stayed with me until yesterday really. I didn’t want to eat on the morning of discharge as Mr Tigerlily was picking me up in the car about lunchtime and I didn’t want to throw up in the car on the 3-hr journey back through Friday night Xmas shopping traffic.

Fausto Palazzo came by very briefly at 8am on the Friday morning and told me that he had removed 3 enlarged PTH glands and left me one good one. My worry is whether it was just 3 juicy ones and one unaffected one, in which case it should “wake up” for me sometime soon, or were they all hyperplasic and could the one remaining turn out to be bad at a later date? It wasn’t a fair question to ask him at that time, and he said it was impossible to say, but I expect histology will show what they were when the results are in.

Soooo – looks as if I was right to insist on the two glands on the other side being investigated, because they were enlarged little burghers as well ....

For my pains taken with this issue, I have ended up with an incision that Mr Tigerlily says was originally 7-8cm long, but it is perfectly along the lower neck crease that we all get at this age (!) and I’m sure it will fade to nothing in time. There are dissolvable stitches inside and some sort of glue on the outside and the wound is getting smaller and tighter every day. There is not a great deal of swelling or other sticky-out bits and I’m moisturising the surrounding skin with coconut oil daily so that it stretches easily to accommodate the wound healing.

I have noticed that the terrible aching I had across the backs of my shoulders and down both sides of my neck has eased off and I feel much “calmer” somehow in myself. My mind seems less foggy already and if only that improves it will be worth it all!

I will post again on progress and healing soon and those of you who know my story will realise that I have a few skulls to bash in the New Year when I’m back at my fighting weight and ready to take on the medical establishment from the top (look out Jeremy Hunt!) because so many medical professionals I consulted were unable to help me towards a diagnosis of one adenoma, let alone the existence of three!

Thanks again to Everyone for your love and support. I was certain I would get through this somehow, but it would have been impossible without the safety net of all my caring forum friends.

Love and GBH from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by pilipala on Mon Dec 15, 2014 5:10 pm

Hi Tigerlily,

So wonderful to have you back and hear all the details. I know it can take months to know what symptoms are really sorted but I really hope you can enjoy Christmas this year with some extra energy and buzz.

It's so encouraging that since this time last year you've managed to get yourself diagnosed and through the limboland cafe, despite the best efforts of our medical establishment to stop you. Three adenomas is quite something considering they wouldn't even believe you had one. It really does give me so much hope that I too will get there one day.

Bring on the dancing on the tables at the Ritz!

Much love
Dee
xxx

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Re: Adios adenomas, one, two and three!

Post by Kathi209 on Mon Dec 15, 2014 5:24 pm

Tigerlily thanks for sharing. You had a long hard journey and I am so happy it is over. I hope your recovery has very little bumps in the road, really hoping for no bumps. I would love to see you dancing on the Ritz's tables. Big hug Kathi

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Re: Adios adenomas, one, two and three!

Post by Amanda Lynne on Mon Dec 15, 2014 6:04 pm

Tigerlily so good to hear from you, wonderful post explaining everything to those yet to have surgery. Fantastic you are starting to feel better already. The doctors who have wronged you better have a good Christmas as I think in the new year there will be some very difficult questions they need to answer !!!!!
Take it easy, get yourself better so you are ready to have a fantastic Christmas.
Lots of love and hugs.
Amanda xxxx
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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Mon Dec 15, 2014 6:21 pm

Thanks Dee, Kathi and Amanda.

I had rather shelved Christmas somewhat but I've just watched The Polar Express and am even feeling a little bit festive!

I've felt really good all day today - calm, cool and clear-headed. Done all the Christmas cards with a smile on my face (usually find it quite a chore without mucho sherry) and haven't been back to bed once yet to rest my tight neck. I'm slathering on the coconut oil to the areas outside the wound that are being stretched, so as to keep them moist.

I still look a bit like Frankenstein's Mummy (his female parent, that is!) and it feels as if I've had a reverse face-lift downwards!! Peter says my face looks slimmer, so there's always a sunny side! (What is the matter with me? I don't recognise myself. Who is this cheerful person???)

Yes, in my quiet moments I have been plotting sedition, I have to say, and would appreciate any suggestions from anyone who has experience of trying to make a point to the NHS about diagnosis. It sounds a bit trite, but it's not about me now, etc etc.

Love and hugs back to you all from Tigerlily (stretched but not broken) xxxx

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Re: Adios adenomas, one, two and three!

Post by Londanna on Mon Dec 15, 2014 6:28 pm

Hi Tigerlily

Thrilled that ou have now had your operation and all is well.   I am catching up on everyone's post as I have been away for a few weeks but yours was the first post I read - couldn't be more pleased.   I wrote quite a long post but it has been lost in space for some reason so this is a shorter version.

Its really good to hear that you are gettng better quickly (as I did) and that the improvements are noticeable.   And I know just how cross you feel that it has taken so long to be diagnosed and treated - let us know what retribution you are planning, there should be a forum of some sort to lodge the serious complaints most of us have about delays, non-diagnosis etc.

In the meantime, I hope you have a really happy and peaceful Christmas.

Anna

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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Mon Dec 15, 2014 6:47 pm

Many thanks, Anna - so good to hear from you - hope you had a good trip.

Yes the improvements are really noticeable day-to-day - what I had heard of but didn't dare hope for!

I'm shelving the retribution till after the festivities to allow myself to get a bit Christmassy, but as the man says "I'll be back" !

Peaceful Christmas Wishes in return to you Anna, with thanks again for your advice and support.

Love from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Brigitte0 on Mon Dec 15, 2014 7:01 pm

Lovely to have you back,  Tigerlily and hear all your experiences. Take your time healing and don't hurry back into the swing of things (Christmas Wink  ) too quickly. 

It's interesting to hear different accounts of The Op, since different hospitals/surgeons do things in slightly different ways. It sounds as though you were as positive as I was, (my daughter called me belligerent) in insisting that all glands were investigated! And a good thing too Smile 

I hope you're going to enjoy telling idiotic idiots how wrong they were about your diagnosis (or lack of diagnosis) and will look forward to hearing about that in the New Year. 

In the meantime, take life gently for a while and I hope you'll be back up running on all cylinders and enjoying your new pHPT free life very soon. 

Lots of love and hugs plus  cat cat cat

Brigitte xxxx
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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Mon Dec 15, 2014 7:27 pm

Thanks, Brigitte - you led by example on the insistence front about examining all 4 glands and I think I took my cue from you there.

 I think FP examines all 4 routinely, but I didn't want his boys to be in any doubt about my requirements in case they were left wielding the knife themselves!

Although it hasn't been too rough a ride as far as the operation is concerned, I sure wouldn't have liked to have to go through it all again to retrieve the two enlarged adenoma on the other side if they had been left over from the first time.

Yes, look after yourself as well, Brigitte, and I hope some old symptoms have cleared up for you too by now, even though you have other things to deal with.

Love and Hugs and cat cat I love you I love you cat cat from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Lucie83 on Mon Dec 15, 2014 7:35 pm

Fantastic news Tigerlily!!

I hope you continue to gain strength dailyand let's hope you can say goodbye to your PTH troubles for good, that would be a brilliant way to see into 2015! Rest up, take your time and keep us posted!

I would say "another PTH gland bites the dust" but in your case let's wave goodbye to 3 of those nasty buggers!!

Take care, all the best!

Lucie xx

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Re: Adios adenomas, one, two and three!

Post by NancyMi on Mon Dec 15, 2014 11:14 pm

Tigerlily,
     Hip hip hooray. 
Except for a few bumps with the nausea, it sounds like you are doing wonderfully.

I agree with Amanda, you have written so well about this.  You clearly relayed what happened and the fact that we have to advocate for ourselves.  I know what you mean about the way the word  "cured" is used.    Maybe the docs are always thinking that most people only have one but for many of us, I don't think this is true.   I was told too that I was cured 2 years ago.  I was skeptical at the time because I knew the major lump in the upper neck was not looked into.  
 
It's so wonderful that you are experiencing those positive affects in how you are feeling with a decrease in achiness and the calmer feeling which to me would be worth gold.  I wonder, had you not stressed to them before surgery how you were experiencing that symptom of tightness in the opposite side of your neck, if they would have looked as diligently. 

So very glad you are going to be feeling better for the holidays.

santa king Very Happy  xxx,  Nancy

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Re: Adios adenomas, one, two and three!

Post by NancyMi on Tue Dec 16, 2014 12:33 am

Well done Tigerlily!

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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Tue Dec 16, 2014 12:59 pm

Thanks so much, Lucie and Nancy.

Yes, I've only just realised that I'm facing a New Year as a New Me - it's a wonderful feeling!

I got a touch of the shivers and the shakes last night, not the tingles, I don't think, but all cold as if ice water was running in my veins. I took two Calci Chews in case it was low Ca and dived back under 3 duvets with a hot water bottle. It subsided within about half an hour; I expect it could have been the last of the anaesthetic exiting my system.

I was thinking of you, Nancy, and Sue, when reporting back about the enlarged lymph node on the other side of my neck to the single adenoma that was seen on US. A "benign reactive lymph node" must have been reacting to something, in my view, and perhaps signalling the presence of the two enlarged adenoma on that side of my neck. The right-sided headache that I have had intermittently since May also seems to have cleared up now as well. I hope you are both able to have your questions answered on this matter very soon.

What was so surprising to me was the fact that not one adenoma showed up on the nuclear/SPECT scan, even the one seen on US. It makes me think that the nuclear scan might not have been done correctly - although it's unlikely as it was done at the Hammersmith where they are used to doing these scans. The report did say that the nuclear agent was seen to have washed through one side of the thyroid more than on the other side, but they were unable to visualise that in itself as a typical PTH adenoma.

I seem to remember reading somewhere that multiple adenoma sometimes don't show up on nuclear scans. Perhaps they merge together somehow and are therefore not easily distinguishable (get me using these long words - brain fog is lifting now as well - hurrah!) from thyroid tissue in some cases. The histology report might shed more light on this when it comes through.

Off to the GP's today to ask for blood test forms to check on post-op Ca/PTH/Vit D/TSH/FT4/FT3/Lipids. I'm seeing the nurse practitioner. You can usually get an appointment with her and she has easier access to a GP than the patients do!!
(Sneaky, sneaky me!)

Thanks again for all your positive vibes and support - Love and GBH from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Hadleigh on Tue Dec 16, 2014 5:49 pm

Hi tigerlily

Glad to hear it all went well and that you are feeling really good, sounds like your remaining para is doing a good job so hopefully you can at last wave goodbye to all things para related Very Happy

Take care 

Nelly
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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Tue Dec 16, 2014 5:58 pm

Thanks, Nelly - I hope you are healing nicely as well. How is your scar looking now, may I ask?

Love Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Hadleigh on Tue Dec 16, 2014 7:07 pm

Hi again

I'm OK but still not feeling the "cure" yet. My scar is about the same size as yours 8cm ish, the puffiness has gone at last but it is still quite noticeable although it is on top of my old thyroid scars which didn't heal well so I'm probably not a good example of neat and tidy op scars Rolling Eyes I think on an unmessed up neck a PTH scar would just about disappear. My surgeon said Bio Oil was the best thing to use, I did buy some but keep forgetting to use it and can't really be bothered now anyway.

Nelly
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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Tue Dec 16, 2014 7:11 pm

Thanks for the reply, Nelly - so glad to hear the puffiness will go.

FP seems to have given me a reverse face lift somehow! Not the way you would want it (stapled down rather than up) but hey I'm missing a couple of chins and my face seems narrower as well - result!!

Love from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Lucycatnaps on Tue Dec 16, 2014 11:38 pm

Hellooo Tigerlily,
I've just got home from my mothers and catching up on everyone.  Thanks so much for all the useful information on all your pre and post op experiences.  I was amazed that you had three lurking in there (Just plain greedy) but it is fantastic news that he found them all and relieved you of them.  It is wonderful to hear that you are feeling so much better and as each day goes by that you are continuing to see and feel improvements.  It gives me hope that maybe one day I will feel a tad more normal.  Tonight it feels like I have a gremlin with a mallet who is sat smashing my toes! Soo keep up the great recovery, take it gently and don't overdo it, you really are a star!
Hugs Sue x
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Re: Adios adenomas, one, two and three!

Post by NancyMi on Wed Dec 17, 2014 1:03 am

Keep us posted and so glad that you had the foresight and brains to keep him on the right track. 

Hoping you feel stonger every day.   Smile I love you

xoxo,   Nancy

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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Thu Dec 18, 2014 12:29 pm

Hi Sue and Nancy

Thanks for your good wishes and I do seem to be feeling a bit better every day.

I went into town yesterday just for an hour but it was really cold and I got a bit dizzy, so I went home thinking it was a bit too early after the anaesthetic to be doing normal things like shopping. I'm staying home now till Sunday (playing "eat what's left in the freezer") when we take the Xmas presents to our little grandson.

I hope things are getting festive for you, so you can forget all about PTH over the holiday.

Love from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Kathi209 on Thu Dec 18, 2014 4:42 pm

I been hearing about dizziness post op not sure if it would be the body getting used to the lower levels or just going through surgery no matter what it is hard on the body. When do you have your blood test again? I am sure the symptom will become less as you move forward in you recovery. Hug Kathi cat cat cat cat

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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Thu Dec 18, 2014 6:35 pm

Thanks, Kathi - thought I'd got too excited about feeling better and was having a relapse!
You are right, of course, it was only 6 days after surgery, and it does take longer than that to recover from an op. I can't actually recall how long I was in the op room. I spent quite some time in the recovery room as I couldn't stop being sick, and then I had to be on oxygen the rest of the time I was in hospital as my pulse rate was rather high.

But the scar is healing really well - seems not quite so long (looked like a second smile, originally ...) and has softened up a bit. Yuck - sorry.

I had some blood taken today and should get the results back by Monday. I can't wait to see what my serum calcium is. It has never been much below 2.50 ever since it has been measured these last two years. 2.30 would make me very happy (x4 for US = 9.20 or thereabouts).

Hugs, Love and cat cat I love you cat cat back to you, Kathi - from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Hadleigh on Thu Dec 18, 2014 6:46 pm

Calcium and PTH levels won't be stable for a while, mine are still jumping around.

At my 2 week post op check my calcium was 2.40 which surgeon said was perfect, its now crept up to just over 2.50 affraid

Kelp us posted on levels TIgerlily, all useful info for comparison Very Happy

Nelly
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Re: Adios adenomas, one, two and three!

Post by Tigerlily on Thu Dec 18, 2014 7:27 pm

Yes, absolutely, Nelly - will do - should have them back late tomorrow or Monday.

Hope your 2.50 Ca is just a peak whilst your levels are stabilising. How are feeling post op now?

Love from Tigerlily xxxx

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Re: Adios adenomas, one, two and three!

Post by Hadleigh on Thu Dec 18, 2014 7:40 pm

Its crept steadily higher since my op, very low 2s then a few around the 2.4 ish now around 2.50 - 2.52, PTH has gone up as well.

I don't feel any better at all to be honest, vitd is very low again and also ferritin but trying to raise them is a problem, had to stop all supplements to let the reflux settle silent 

Not sure how Christmas is going to happen as I'm knackered before its even here Rolling Eyes

Nelly
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