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15 years

PostPosted: Mon Feb 20, 2012 9:08 pm
by member_37049
Hi there

I had a craniopharyngioma when I was 3 years old, now I'm 20 and a few months ago I had a liver tumour. Has anyone else had a craniopharyngioma and how old was you when you was diagnosed?

Re: 15 years

PostPosted: Tue Feb 21, 2012 8:24 pm
by Anna
Hi

I had a craniopharyngioma, diagnosed when I was 16 years old but it took 7 years and lots of tests before they found it! My only symptoms were slow growth and under development and even then the craniopharyngioma was only discovered with a more detailed scan to investiagte cushings, which I also had.

I am now 44yrs old. I work part time and cope by pacing myself but currently considering being solely self employed as my energy levels have reduced. Hope you're managing to cope ok?

Just read your post on having to come off growth hormone. For a few months (can't remember exactly how long) I came off GH and what I noticed most was reduced strength e.g. not being able to run for the bus or struggling to carry shopping more than normal. My mood was generally lower but hard to say if that was due to lack of GH

Re: 15 years

PostPosted: Thu May 31, 2012 10:10 am
by member_32140
Hi , im New to the Forums on Pituitary foundation, my name is Bob, im from Ireland,

i too was diagnosed with a Craniopharyngioma Pituitary Tumour,

My symptoms were, stunted Growth, Headaches, blurred vision, constantly thirsty.
my mum took me to My Gp for bloods, because she was concerned that i wasnt growing, i was smaller than friends and siblings and had no energy, blood results showed low hormone levels, so i was sent to Hospital for extensive bloods, and had a ct scan too. the ct scan showed i had a pituitary tumour.

i had never heard of a tumour before or pituitary gland, i didnt understand.
i was stated on hormone replacement meds, thyroxine, Hydrocortosone, Growth Hormone, ddavp,

i was referred to Beaumont Hospital in Dublin, who specialize in Neurosurgery, i was given a date for surgery, it was a year after my tumour was diagnosed when i had my surgery and tumour had doubled in size from first diagnosed, it was size of 2 grapes, my pituitary gland was removed because the tumour was soo big , it had taken over and pituitary gland was not functioning , im now 32 and for years found it difficult to deal with it, you feel your the only one, no one understands you or what you live with on a day to day basis, i had never met a person with the same tumour for nearly 15 years, i came accross the Pituitary foundation website and attended there first meeting in Ireland, i attend the irish meetings and have set up a facebook page for irish patients and their families, as there is very little info online or support.

regards to growth hormone, i came off it for about 2years , as i had enough and didnt notice any benefits, but started taking it again, as i put on allot of weight, felt very low, depressed , etc, am feeling great now that i am back on it, ive been in full time employement for the last 10 years and purchased my own house , looking into having children, and my Endocrinologist has Referred me to see a specialist in fertility.

Re: 15 years

PostPosted: Tue Aug 07, 2012 6:42 pm
by jemima
I was finally diagnosed at 19 following incorrect diagnosis of just being a teenager! osteoporosis, anorexia, having had migraines, nose bleeds and although tall I stopped growing at 14. No puberty and still gp insisted nothing wrong! Finally had slipped hip (upper femoral epiphysis) and the osteo saying I think you might have a pituitary tumour.

It was the size of an egg! They removed whole lot - empty sellar and now I'm panhypo. It has been a bumpy ten years since the op although GH made a huge difference.

Now on the ivf merry-go-round trying to get that aspect of hormones sorted!

I think everyone struggles to get diagnosed but in this day and age the medical profession really should have sorted themselves out. I am certainly interested in the settlement the girl with acromegaly gets from the nhs!

Nice to hear from some other craniopharyngioma on here

Xx j

Re: 15 years

PostPosted: Tue Aug 14, 2012 1:03 pm
by Dodgezeb
Hi,
I was diagnosed with a crainiopharyngioma when I was 12 years old.
I had been suffering from weakness in my legs, sickness every morning not long after I'd woken up, terrible headaches, I was very skinny and my senses were all affected. I could hear things nobody else could (my brothers talking in their room, cars whizzing round the streets), my taste buds were all over the place and I had tunnel vision a couple of times.
My mum took me to the doctors a few times. I think he first put it down to flu, and then down to migraine and then the third time he arranged for me to have a scan. I was sent for a scan really quickly and then rushed into hospital the same night I had the scan.
I had three operations - one to relieve the pressure from the tumour, one to insert a shunt and a craniotomy to remove the majority of the tumour followed by 6 weeks of radiotherapy.
I now take thyroxine, growth hormone and the pill and sometimes desmopressin. Luckily I do not need hydrocortisone.
I experience extreme tiredness, weakness, shakes and palpitations on my worst days, but these seem to happen if I push myself and don't take time out.
It's good to know there are people out there who understand what you're going through.