Surgery advice

Surgery advice

Postby tabi » Thu Jun 08, 2017 11:39 pm

Hi all
I have been told i am having surgery at very short notice ,in a few days time to remove my large pit tumour producing growth hormone.

I have never had surgery before or ever stayed in hospital so am very worried .

Any advice or tips on what to expect would be appreciated.
I was given a booklet but its very generic ,what and how much do i need to take in with me.?
Also how did people find the food situation in hospital i am a fussy eater at the best of times!
Also what about washing? i am slightly OCD when it comes to washing and personal hygiene.

Thanks from Tabi.
tabi
 
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Re: Surgery advice

Postby member_41389 » Fri Jun 09, 2017 8:28 pm

Hi Tabi

I had surgery in June last year and also have Acromegaly.

The surgery felt very daunting in prospect but actually was relatively low impact. I found the worst bit was the dressing that sealed the hole in my nose meant I couldn't use my CPAP machine for a couple of months and I had to spend a couple of weeks breathing through my mouth. The PF Pituitary Surgery and Post surgery notes were helpful. You don't say if you are steroid dependent - if you are then you need to discuss this with your surgeon and the anaesthetist to ensure that they will provide adequate cover for you pre- during and post-op see (http://www.addisons.org.uk/forum/index.php?/files/file/4-adshg-surgical-guidelines/).

In terms of things for your stay post-op I found the most important things were reading matter and things to keep occupied. Depending on where you go they may have wi-fi available which helps. I was discharged 3 days post-op and so had no real issues (but I did end up readmitted 10 days later with low sodium). Immediately post-op I was on the High Dependency Unit for 24 hours (I'm steroid dependent) and then on the general ward.

In terms of food I found the diet reasonable except that their concept of a portion of fruit or vegetables was significantly smaller than mine - in fact the family resorted to bringing in bowls of prepared fruit otherwise I think scurvy would have resulted.

All the best
Tim
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Re: Surgery advice

Postby plum » Fri Jun 09, 2017 10:15 pm

Hi Tabi
It is scary but really it's OK. I was petrified beforehand but afterwards it was OK. Really.
I think that they put us on fairly strong meds so when I woke up from the operation I was quite cheerful!

I found it difficult to swallow for the first few days and this might have been because my throat was so swollen that they had difficulty intubating. So I was mainly on liquids - soup and drinks. One thing that was useful was cordial - everyone else on the ward had a bottle of some type of cordial and we were swapping flavours with each other - eg ribena for lemon barley water! I agree with Tim - fruit is something worthwhile for people to bring in for you. And yoghurt? Although not too much as you might not have access to a fridge.

Take a few changes of nightwear, some nice toiletries to pamper yourself, a book / puzzles / music / magazines etc. And a notepad and pen/pencil just in case. Depending on the hospital / ward there may be a system so you can listen to the radio or watch TV (you may have to pay for TV). Life is quite busy on the ward in the morning what with breakfast and ward rounds and pharmacist and cleaners and changing bedding and bathing etc. Then it's lunch. And then, around 2pm everything quietened down and we were all tucked up and dozing off! Then things livened up again in the late afternoon as visitors arrived, dinner, pharmacy again, nurses handover.

I had my fluids monitored, in case of diabetes insipidus. so that meant measuring what i drank and i had to pee into a measuring container.
I was in for 9 days because my sodium and other things were not properly balanced.

You may get visited by a bunch of students who have been brought to see the 'rare person' - you are allowed to say no.

hope all goes well

plum
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Re: Surgery advice

Postby Carl » Mon Jun 12, 2017 11:52 am

Can only agree with what has already been said. I had my pituitary tumour removed in Southampton Wessex Neuro Centre, and although it was obviously a big deal for me, all the staff were brilliant and had dealt with people having pituitary tumours removed before so knew what they were doing. My operation was short notice too, just a few days, which in hindsight was probably a good thing as it gave me little time to panic!

Do make sure you discuss with them the surgical guidelines linked in the post below, in my case I have adrenal insufficiency so not making enough Cortisol meant they had to dose me up with Hydrocortisone before the operation......not sure that is the same for a tumour producing growth hormone?

When I woke up, my nose was all bandaged up with a large 'thing' as well as packing up each nostril. This made breathing through my nose impossible and wasn't that pleasant for a few days. I then had to do the nasal rinses with salty water for 4 weeks, which again was not that pleasant but it did the trick. I wasn't allowed hot food for a few days nor to drink through a straw. Definitely go for some cordial, as hospital water on its own does taste foul. I had my fluids monitored too, so expect to have to note down what you've drunk and peeing into a container.

The notepad idea is a really good one, the amount of times I would be wake in the middle of the night and thought of a question. Being able to write it down was a godsend, so that when the doctor/consultant appeared in the morning I could remember what my question was. On the subject of the middle of the night, I didn't sleep very well at night, well not very much at all, not uncommon unfortunately. When I was exhausted enough I dozed off. But overall the experience wasn't awful, I'd rather have not been in hospital, but the staff were lovely. For washing, they left me to it. The first couple of days they brought me washing gear to do by the bedside, then when I was able I took myself off to the wash room and had a shower, just cleared it with the nurses first - I was in for 5 days in all.
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Re: Surgery advice

Postby plum » Tue Jun 13, 2017 9:45 pm

just a thought - if you are a light sleeper / easily disturbed by noise, maybe take some ear plugs?
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