worried about surgery

[Jasmin1993]

Hi I'm having surgery to remove a pituitary tumor on the 17th of september and just wondered if anyone whos had it done could offer any advice, mainly i'm worried about recovery time as i want to miss as little of college as possible, i'm hoping as i've been keeping myself reasonably fit by trying to exercise regulary i'll recover quicker but whats other peoples experience here. also i was told by one endrocrinologist that hormone function can return to normal after surgery but i've been told by another that in alot of cases it doesnt and i'm likely to be on replacent hormones for life, has anyone had the surgery and gone on to have normal hormone function after, i hate being on the meds as they've caused me to put on alot of weight which before starting on the medication i'd worked hard to lose but am now finding almost impossible to shift. i would be gratefull for any advice people can offer.
thanks

[Jo Bull]

Hi there,
I had my surgery 7 th may this year. I'm a lot older than you 49 and work as a deputy head. I returned to work part time 4 th July but it is very much a case of each case is different and how you react to surgery and any potential minor setbacks. My only advice would be don't try to do too much too soon. I really struggled back at work: being at home taking things easy is no comparison to a normal days.
As for hormones, I've so far avoided having to take growth hormone which my consultant said I would need to go on after the operation, my growth hormone levels have normalised. I certainly still need my Desmopressin for Diabitis Insipidus and am having a test in a month to see about the others, namely the hydrocortisone. Not at all sure what the results will be, certainly hoping for the best, but feel so much better now tumour gone, I'll take whatever comes, apart from the weight gain!!!!!
Good luck with your surgery

[plum]

hi

i agree with Jo. in that everyone is different and also to be prepared to take things easy.

i had transphenoidal surgery in december 2010. my understanding was that this would remove the tumour and that i would be in hospital for 3-5 days. that is certainly the case for some people. however the surgeon discovered that the tumour had poked itself into inaccessible parts so he could not remove it all. just the bits he could reach.

and then while in hospital you'll be told to measure the amount you drink and they'll be measuring the amount that you pee. i was in quite serious negative fluid balance so ended up 9 days in hospital until they felt it was safe to let me out, with desmopressin. but not everyone goes through that to the same degree. make sure that you have a good idea of the size of the cup / jug that you are drinking from. i had a 200ml cup but the nurse told me it was only 150ml so it looked as though i was drinking a lot less than i actually was.....

i slept a lot when i got out of hospital: i was ok in the mornings. initially a bit wobbly on my feet but that resolved itself within a couple of weeks. but i needed to sleep for an hour or 2 most afternoons for a couple of months. i'd advise stocking up your freezer with soup etc in advance so that when you get out there is less cooking to do. just in case.

as for hormone replacement i was put on hydrocortisone and i am still on it although the dose has been reduced. be ready to spend quite a lot of time at the hospital for blood tests after the operation. i'm still being tested to see how the various hormones are doing and whether any changes need to be made to medications.

as a result of the surgery, the physical pains that i was experiencing have stopped so it was definitely worth it.

good luck!

plum

[Mgh]

Hi Jasmin

The results post surgery are very variable. I have a colleague who was lucky to be diagnosed through an MRI scan while he was studying for a PhD in a neuroscience department. He was only diagnosed because he had recurring headaches and his prof asked him if he would like a scan as a part of a learning experience. He had the pit tumour removed; he is on no medication and has no problems now, 15 to 20 years later. My niece who is a young hospital doctor has seen a patient back playing sport six weeks after his transphenoidal surgery.

I, on the other hand, had symptoms for years and was diagnosed eventually because I had vision problems. I had diabetes insipidus temporarily following the surgery and returned to hospital after a couple of days with symptoms that indicated I needed hydrocortisone. Fifteen months on it is still quite a struggle to achieve correct monitoring in order to arrive at the optimum doses of the various medications. One of the main difficulties is the lack of coordination between the medical professionals so nobody considers the whole picture of how the patient is responding and if all the medications are correctly titrated in relation to one another. Hydrocortisone, levothyroxine, growth hormone, HRT patch, Calvofit and Alendronic acid (for bones) make up my present chemical cocktail!

To prepare yourself for hospital, I suggest that you check out the relevant 'hospital prep' information on the Foundation website and maybe phone the nurse helpline. I have found both invaluable. It might help you to write a daily account of what is going on if, like me, you find it difficult to recall what happened on a particular day. My daily jottings helped show that the diabetes insipidus symptoms were gradually waning so could delay a decision about medication. It still helps me keep track of what is going on, even though now I don't write it every day.

Look after yourself and go into hospital feeling as well rested and positive as possible. I wish you all the very best for surgery and an outcome as uncomplicated and as good as can be.

Maria

[Jasmin1993]

Hi thanks for all your replies was hoping to get back to college a couple of weeks after but this might be to ambitious but getting this sorted is more important and i'm hoping eventualy i'll be able to stop or at least reduce my meds as they're causing alot of problems with my weight which i'm trying to counteract with exersice and i've lost a bit but its very hard to shift.

[member_38932]

Hi Jasmin
Good luck with the surgery this month - and the first thing to say is don't be too worried although it is understandably daunting.

I had transephenoidal surgery for a pituitary tumour remove exactly 3 weeks ago and apart from feeling feeble at times have recovered more quickly than I had anticpated. It is a slow process - and you do need to listen to your body and not push yourself too much and too quickly. I still do get some headaches but do not let them develop - take a couple of paracetamol and sit or lie down for an hour or so till it passes. I have been very lucky to have no complications and for once in my life have followed "orders" from my medical team and am doing what I am told. Seems to have helped.
As to whether you will have to contiinue on steroids, thyroxine etc for life - well we are all different. In my case my pituitary is no longer functioning so the answe is YES, but when I remember how unwell I felt prior to diagnoises (Feb 2012) I know that it is worth it and am now hoping to gradually build up my activities .

I retired from a busy job in May 2011, moved house and had a busy year and was hoping that 2012 would be a good year for doing what I wanted when I wanted - also my husband has had a horrible year looking after and worrying about me. But we are determined that 2013 will be brilliant - and hope it is for yo too.
Annetta [/color]

[Pat]

Just to add some reassurance that it's been 26 years ago last month, since my surgery and I'm sure there are others who have had their ops even longer ago.
You will be in good hands Jasmin - let us know how you are doing.

take care
pat

[Jasmin1993]

Hi thanks for your replys surgery is on monday had my pre op assesment on tuesday and that went well and i'm fit and healthy enough for surgery gonna treat myself this weekend with a nice relaxing day at the spa and a facial tomorow, will keep u updated on how i'm doing.

[member_38932]

Hi Jasmine
You will be fine - and hope you enjoyed your spa day. To celebrate my 4 weeks post-op I am having a pedicare/manicure and haircut on Tuesday - and will be having a spa day with my daughters in Dec - when I will be able to swim properly (i.e. face under water) again.
Cheers Annetta