Craniopharyngioma

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Craniopharyngioma

Postby member_37299 » Fri Jan 25, 2013 3:47 pm

Hello my name is Scott and I'm new too the forum.
I've had a craniopharngioma for 16 years, I had an operation when I was
8 years old and then radiotherapy when I was 11 years old.
I take ddavp, levothyroxine, hydrocortisone, growth hormone and
Testosterone injections,
I am curious to know if there's any body out there who has this condition
And if they suffer with depression and anxiety aswell because I also take medication
For these two things aswell.
Thanks.
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Re: Craniopharyngioma

Postby member_6464 » Thu Jun 20, 2013 4:19 pm

Hi Scott,

My name is John and this is my first post.
I had a craniopharyngioma removed 1998.
And on the aforesaid medicines plus "Nebido" for sexual function.
Also am on tablets for my stomach and antihistamines.

I also suffer sporadic bouts of depression and
periods of anxiety but do not any medicine for them.
Ta.
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Re: Craniopharyngioma

Postby member_37299 » Mon Jun 24, 2013 10:30 am

Hello John thanks for getting back to me.
That's when I had my op in 1998. I also take the nebido.
I'm in the process of trying to come of antidepressants as I've been on
Them for about 4-5 years and they've never worked and where
I'm fatigued everyday they don't help with that either.
Do you suffer with fatigue yourself?
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Re: Craniopharyngioma

Postby member_6464 » Mon Jun 24, 2013 7:23 pm

Hi

I also suffer form fatigue issues, this makes live much more unpleasant and difficult.
It also leads to rows with my wife about not doing something.
I guess it's just part of the disease and we just need to live with it.
Very depressing, in its on right.

Thanks for asking.
John
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Re: Craniopharyngioma

Postby member_37299 » Wed Jun 26, 2013 10:22 am

Hi John
Yeh your right there. That's why I'm trying to get of the antidepressants
They just contribute to the fatigue.
How are things with your condition? If you don't mind me asking.
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Re: Craniopharyngioma

Postby member_6464 » Wed Jun 26, 2013 12:54 pm

Hi Scott,

No, I don't mind if you ask.
At the moment things seem to be reasonably stable.
Though it took ten years to get there, it a cyst and
cluster headaches. Awful.

Any trouble yourself?
John
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Re: Craniopharyngioma

Postby member_37299 » Thu Jun 27, 2013 7:22 am

Hi John
Yeh I can imagine how bad the headaches must have been.
It took about 8 years for me too be diagnosed, the tumour was
Present from birth and as I got older more and more symptoms were
Appearing although I don't remember the symptoms myself
Because of being really young. My parents knew there was a problem
But the dr wasn't helpful at all but we got there in the end. The
Craniopharyngioma condition is stable but for the past 8 years or so
I've been struggling with mental health problems so its an ongoing battle
With that.
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Posts: 9
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Re: Craniopharyngioma

Postby member_6464 » Mon Jul 01, 2013 4:06 pm

Hi Scott,

Had you a good weekend?

My tumour came on basically overnight, with the
headaches and sight loss on cue. Sadly for myself I
held off going to the doctors, until my wife and
mother took the matter out of my hands.
Though the years, there was instances which
looking back where out of place.

John
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Re: Craniopharyngioma

Postby member_37299 » Mon Jul 01, 2013 5:57 pm

Hi John
Was an ok weekend. Yourself?
I can imagine that must have been tough to deal with, with
It coming on sudden.
Do you have your nebido injections every 3 months?
I use to have mine every 3 weeks at 250mg for about 8 years but I
Only made the switch last year to have a 1000mg every 3 months.
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Posts: 9
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Re: Craniopharyngioma

Postby member_6464 » Mon Jul 01, 2013 9:11 pm

Hi Scott,

My weekend was't bad at all. Was out on the posting.php?mode=reply&f=6&t=361&sid=d9356a54d94db18deb73981d92063832#.
Sounds much worse than it was.

Yes, I do get the Nebido injections every 3 months.
Change was made just after Christmas 2011.
Prior to this was on 250ml every the 3 weeks,
which I found every regimentary.

John
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