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Experiences of Surgery

PostPosted: Mon Sep 19, 2011 10:17 pm
by emer
I thought maybe it would be nice for people to be able to post their experiences of surgery - what kind of surgery did you have, how did you feel afterwards, how long were you off work for etc?

I had transphenoidal surgery for a pituitary adenoma (TSHoma) in April this year. The surgery went fairly smoothly - in fact, immediately afterwards I think the combination of the increased steroids they give you and the morphine meant I was actually rather hyperactive! I was in hospital for three nights, and after the first day the only painkiller I needed was paracetemol, which I only had to take once.

The worst part immediately after the surgery was all the blood tests - I hadn't been warned about this beforehand but they took my blood every hour for the first few hours, then it drops down to every two hours, then every four etc. Being repeatedly woken up in the middle of the night for blood tests isn't conducive to a great night's sleep but there you go! Having the packs taken out of my nose was also pretty unpleasant - one nostril was painful but ok, but the other *really* hurt and I managed to spray blood everywhere (from the look on the nurse's face I'm pretty sure that doesn't usually happen, though...)

After I went home, everything was fine - it took me a really long time to get any energy back and I found it quite hard even sitting up under my own power at first, but I think this was largely because health issues have meant that I'd not been able to do strenuous exercise for over a year before the surgery, so it just took me a bit longer to recover. I was back at work six weeks later still feeling a little fragile but essentially perfectly ok to get back to the office!

Your turn!

Re: Experiences of Surgery

PostPosted: Tue Sep 20, 2011 12:03 pm
by plum

this seems like a good idea. yes, it would have been reassuring to read some more of patient experiences of surgery beforehand. in my case i had transsphenoidal surgery to remove a growth hormone producing adenoma in december 2010 and was surprised how painfree the whole thing was afterwards.

i was unable to eat anything solid for almost a week afterwards possibly because my oesophagus had got 'traumatised' during intubation. but gradually, and thanks to support from a speech therapist in hospital i was able to swallow more easily. my sister brought in squeezy tubes of fruit puree which were soothing to eat. the anaesthetic had a weird affect but possibly that would have happened whatever type of surgery i had.

i also was only on paracetamol (morphine immediately post surgery). one morning i even refused the paracetamol since i thought i was ok. bad idea: a few hours later i was pleading for painkillers. the nurse then said that it was important to keep taking them otherwise the pain breaks through.

i was in for 9 nights in all as my fluid balance went haywire. i was keeping a note of how many cups of fluid i drank. there was a slight problem there becasue i was told that the cup measured 150ml so that is what we used as the unit of measuremement. i 'borrowed' one of the cups later and discovered in fact it was 200ml, which, when you are drinking 12 to 14 cups a day makes quite a difference. so: do check your unit of measurement otherwise you may be assumed to be in fluid imbalance when you are not. and vice versa..

one of the most scary things was my first sneeze. the doctor said it was improtant not to try and hold it in becasue that could put pressure on the brain. i could not smell anything for the first week either.

post surgery my energy has been so unpredictable and often so low that i am still not working. initially i felt as though i was on a rolling ship and it took a couple of months for that to stop. also, my brain no longer functions as it 'used to', but that started before surgery.

the physiotherapists in hospital were great also: i was relying on a walking stick when i went in and gradually they got me walking without support. walking up and down the corridor whenever visitors came was an important part of recovery.

good luck to anyone else about to have surgery. it is worth it. much of my pain stopped as a result and it is now much easier to walk and move about than before the operation.

Re: Experiences of Surgery

PostPosted: Tue Sep 20, 2011 7:07 pm
by emer
Hi Plum, thanks for replying! Some of what you said definitely resonated with me as well :)

With regards to fluid balance, it's definitely important to try to keep track of what you're drinking (obviously it doesn't help if they give you a cup with the wrong measurement on!). I struggled a bit to drink enough while I was in hospital - as a general rule I almost never feel thirsty anyway and I just kept forgetting to drink which meant they had to stick me back on a drip to make sure I was hydrated enough. I was very annoyed with myself for letting that happen!

And sneezing - I was really scared of my first sneeze too! Although in fact I was told to try and avoid sneezing, no-one mentioned that holding it in might put pressure on the brain. I managed not to sneeze for the first two weeks and then when I finally did sneeze I was incredibly worried for a few seconds when I realised I couldn't stop it - fortunately it didn't even hurt.

I'm sorry to hear you've had such trouble with your energy levels though; it is incredibly frustrating when you're really up and down.

Re: Experiences of Surgery

PostPosted: Thu Sep 22, 2011 12:14 pm
by plum

now I remember i got really fed up drinking water and squash while in hospital. in the ward we were all swapping squash flavours in order to have a bit of variety! in fact i found milk was a perfect drink.

yes the lack of energy (physical and otherwise) is difficult but the main thing that i find hard to cope with is the loss of mental competencies....but maybe that is another thread! it was unlikely to be due to surgery as it started before I was diagnosed.

have you managed to get your physical fitness back? it is hard after so long without exercise isn't it?

Re: Experiences of Surgery

PostPosted: Sun Sep 25, 2011 8:28 pm
by stevea
i had my surgery about 10yrs ago. same problems with fluid intake and output .they thought i had developed DI until i pointed out that i was breathing through my mouth because of the packing up my nose (how do they get all that up there) .I was in HOPE hospital about 10 days because my hormone levels wouldn't balance out and the surgeon actually chastised the endo at a ward round because he thought i should have been gone long ago.i was back at work after about 12 weeks and a few weeks after that my manager told me that "people "had commented on how much calmer i seemed to be. I must admit i didn't realise how bad my mood swings had become until then.

Re: Experiences of Surgery

PostPosted: Sun Sep 25, 2011 8:52 pm
by plum
the fluid balancing is clearly not straightforward is it?

the surgical team also wanted to send me home a couple of days earlier than the endocrinologists....but i was very glad to be in hospital since i was worried about shrivelling up into a prune on my settee.

one young (?trainee?) endocrinologist actually told me, 2 weeks post surgery, that if my fluids had not balanced yet then it was unlikely that they ever would....... but i hated the desmopressin even more than i hate the hydrocortisone and i really struggled with it. luckily 5 months post surgery i was 'allowed' to stop (by a different endocrinologist) and phew, am able to balance on my own.

Re: Experiences of Surgery

PostPosted: Wed Jun 06, 2012 2:56 pm
by Jo Bull
Hi plum, thanks for starting this post. I had the same surgery on 8th May this year for the removal of a non functioning tumour. The stay in hospital ended up being 14 days due to a build up of fluid needing a lumbar puncture (not pleasant) and an imbalance of sodium levels. I already had DI before admitted so for my whole stay had to measure input and output because prior to surgery I took my DI medication visa nasal spray,Something that was impossible to continue post surgery! I was and in fact still am on tablets as my nose is still blocked.
I am in Fact trying to get in contact with my surgeon as despite some medication for blocked sinuses I have a disgusting taste and smell in my mouth, like rotting vegetables and when stood up I am still very quesey! If anyone knows if this is normal or has any suggestions I would be hugely grateful; my G.P is great but admits himself that this is all new to him too.
Jo Bull

Re: Experiences of Surgery

PostPosted: Wed Jun 06, 2012 9:02 pm
by plum
it is definitely worth trying to get in contact with teh surgeon and explaining about the tastes etc. is anything salty?
a month or so after surgery i noticed that i had developped a drippy nose. i didn't mention it in my appointments becasue compared with all the other things that were wrong with me that seemed comparatively minor.
i continued to drip and especially when i leaned forwards. it was quite yuk and i became like a dog: if my nose was dry then i knew that i was a bit dehydrated. anyhow by chance about 10 months after surgery i happened to mention this in passing to one of the neurosurgeons and suddenly there was lots of flapping about to test what the liquid was and whether i was dripping CSF. it was certainly a bit salty. We still don't know because initially i didn't give them enough of a sample to test etc etc.
Anyhow the lesson learned is: let them know about everything even the little wierd changes like that, just in case.
good luck
plum .

Re: Experiences of Surgery

PostPosted: Thu Jun 07, 2012 5:28 pm
by Jo Bull
Thanks plum,
No, no salty taste. As it is I rang Alison the Endocrine nurse on this site. She advised, given. I am having difficulty contacting my surgeon to ring my endocrine consultant, at a different :P hospital to surgery. I did and was there about 3 hours, x ray, blood tests, antibiotics and lots of head scratching . They are not sure but think it is high up sinusitis. Ct scan to follow and follow up next week. All seems to have flung into action which is reassuring and my hospital where the surgery took place have said if no improvement by Saturday to go to A and E and see the on call neurosurgeon.
Many thanks for the advice, you really feel on a limb with this. Even my GP who is lovely admits he is reading up fast!

Re: Experiences of Surgery

PostPosted: Fri Dec 14, 2012 6:39 pm
by mumcat2
As I've only just rejoined PitPat (as it was) this is a very late reply, but I couldn't resist putting my oar in on this...I was only the 5th patient anywhere in the world to have transphenoidal pituitary surgery; this was for a pituitary prolactinoma but this was in 1976 in Sheffield.
I subsequently needed radiotherapy as the tumour re-grew, but as at the time of radiotherapy I was only expected to have 6 months or so to live and I've had 34 years so far, I feel a great affinity for everyone who is posting about the surgery and can only say that it's not to be given up on even if you feel terrible for a while after.
I count myself a one of the very lucky ones.