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Re: Testing uno dos tres

PostPosted: Wed Oct 20, 2010 8:30 pm
by Pistolpj30
I had a craniopharyngimoa back in 2008, massive shock to the system and almost lost my life to it. All ok now. 1 op to have a drain put in then a craniotomy to remove tumour. Then 6weeks of radiotherapy. Now on hydrocrotisone twice a day/testogel/growth hormone injections and I have diabetes insipodus. Be good to hear from other people

Re: Testing uno dos tres

PostPosted: Tue Oct 26, 2010 10:20 am
by rochellerudy2010

It's good to be back on the forum. I missed it terribly!

Hope all the Cranio families out there find the way back here.

Taylor is doing okay. He has his eye test in Nov, GH clinic in Dec, Scan in Dec, so hopefully by New Year we can breathe easy again, if all is stable!


Re: Testing uno dos tres

PostPosted: Tue Oct 26, 2010 11:27 am
by tjd
Hi Rochelle,

Yeah a familiar name. Glad to hear Taylor is doing ok, Charlie is going well. Hopefully a few others will find their way back soon.


Re: Testing uno dos tres

PostPosted: Thu May 12, 2011 11:04 am
by bear
Hi forum

This is my first post in the forum. I think I will be using it more often as it is good to share comments and queries with others with similar issues.

I had a craniopharyngioma diagnosed away back in 1980! Seems so long ago now, but I remember it. I was 7 years old when it was removed. I remember it well. I was a grumpy little boy the following months. The recovery period seemed long and frustrating. I remember not being able to see for a month or so afterwards, and being in a bed, which I suppose would have been an intensive care unit. I remember my relatives voices, trying to cheer me up. I remember the constant thirstiness (which would have been the diabetes insipidus kicking in) and the nurses telling me just to pee when I needed to. The diabetes insipidus was intermittent then, before it became a permanent feature later on.

I suppose I have came a long way since then. 39 years old now. I have been working in the NHS since 1995 as a medical equipment technician. I am on DDAVP for the DI, Genotropin for the growth hormone deficiency, hydrocortisone tablets for the adrenal defficiency and I am just about to get my testosterone levels checked as I feel I need some help in that respect, if you know what I mean gentlemen. :roll:

The growth hormone story is a funny one. I was on it briefly as a teenager to help with the lacking inches of height. treatment was stopped when it became evident that my bones had reached their full growth. Then around 12 to 14 years passed with no growth hormone in my body, hence the treatment now. I knew that there was something lacking. Tiredness, being overweight and being rather withdrawn in general things in life proved to be a symptom of that.

I think being a patient with panhypopituitarism, you have to be quite sensitive to how you are feeling generally. Keep a diary if you have to. The doctors rely on the feedback of the patients to determine treatments sometimes. I know bloods are taken, but they need to hear the human side of the story as well.