Prolactinoma recurrence

[robjmann]

Another Update:

Operation approx 8 weeks ago. Seen neurosurgeon and he is convinced he got all the tumour (although not had another scan yet). However, prolactin level has shot up and testosterone down. Endo seen today and he has ordered more bloods - says could be stem producing high level of prolactin. Will want scan and revert back to Quinagolide if levels don't show improvement.
Thought removal of tumour would resolve all this. Headaches and nausia gone but feel exhausted!

[robjmann]

Another month has passed without much change in condition.
Back on meds but exhaustion getting worse!
Anyone got any ideas, as this is getting depressing?

[icky]

It's 26 months since I last made an entry into the forum (this topic). Well, I still have my prolactinoma and my general health is still very much as at was then. Unable to get around much, very short of breath after the slightest exertion. sleep problems. All this is probably due to my heart condition though. I was considered for surgery to remove the ever-growing tumour but this didn't go ahead due to its position and intimate contact with nerves & blood vessels. So I went for a five week daily course of radiotherapy as a result and now have to wait 6 months or so before any significant fall in prolactin levels can be seen. I get the results next month.
One thing though, for about 5 years now, my nose has been almost constantly running (rhinorrhea) with a clear, very watery, salty liquid, far more than appears when your eyes are watering. I mentioned it to my endocrinologist and he dismissed the idea that it was anything to do with my pituitary condition. Since then I saw something on the internet which caused me to google "prolactinoma meningitis rhinorrhea" This came up with a large amount of info about the tumour damaging some structure causing cerebo-spinal fluid to drain into the sinuses with a subsequent meningitis risk. Has anyone else experienced this? It's quite rare and I'm quite prepared to accept that I'm being a touch hypochondriacal (new word!) about it all but its been going on for about five years and I'm a bit fed up of it now.

[plum]

hi ikky

yes i have similarly runny nose.
i have had one since transsphenoidal surgery 2 years ago.
at first i thought it was just from too much crying but it has persisted even though the tears have stopped.

i mentioned this as a passing 'joke' to one of the neurosurgeons who i happened to bump into in the corridor last year and he was horrified and panicky. so i had to collect a sample to test for CSF fluid and that came back negative and everyone calmed down. i was referred to the ENT department where the doctor mentioned rhinitis. of course my nose dries up when i see her but drips away merrily other times.

at my last visit with the endocrinologist he looked at my pituitary scans pre and post surgery and pointed to a large grey mass in the middle of my head and said that was fluid in the sinus. so that could be the cause of the drips.

can you get referred to the ENT department to check what's going on?

good luck

plum

[icky]

Hello again.
Its last year since I posted and I've got one or two things to write about. I wish I could report some improvements so as to possibly help you guys but it's not to be. There is one item of change however and I suppose you could call it an improvement but as I haven't noticed anything then I don't know how to classify it. Since my Stereotactic radiation Therapy course ending in November last year my prolactinoma o/p has taken a nose dive and my tumour has shrunk considerably. My nose still drips interminably; a clear, loose drip which is hardly noticeably till it drips and embarrasses me no end. I have started to get excruciating headaches most evenings which tablets don't seem to affect much and the doctor doesn't attach much importance to. These headaches give me a touch of nausea too.
The tiredness is getting worse. I don't know if this is down to my cardiac problems, my pulmonary problems ( I have 1 lung 'down' due to half my diaphragm being paralyzed). Consequently I can't get around very much as I am constantly severely short of breath. So much so that I need a CPAP machine to use at night to keep my lungs working as well as they can. As I can't exercise, my weight is going up. I have started Human Growth Hormone again this week after it was stopped when my tumour started to grow early last year. I'm hoping that will give me some improvement.
I think it's time to start banging on one or two desks to get someone to take more than an instant opinion of my problems as I'm getting more depressed by the week.