What’s happening

Hi, not written anything for a few days so thought i’d take the opportunity to bring you up to speed.

On Tuesday 17th July 2012, it will have been exactly one week since i was last at The Christie. I have a scheduled appointment with Prof T next Tuesday where he will update me on the tolerance test from last week but the current priority for me is to hear from Mr G, the neurosurgeon at Salford Hope. Mr G will be performing my Endoscopic Transsphenoidal Surgery to remove the tumour.

Here’s a short video to explain the surgery over in the US:

I know its only been two weeks since the Prof referred me to surgery but waiting to hear from Salford Hope is literally driving me around the bend. The hinges on my postbox are quite literally getting hammered and the postman has clocked me watching out for him :)

Anyway, i have just dropped a nice email to Prof”s secretary to see where things are up to with Mr G so I should hear something soon. If not i’ll have to wait until next week’s appointment to update you on the tolerance test and surgery.

What else has been happening?

Well a week ago i started on the drug Cabergoline (500microgram) and have been taking half a tablet twice a week. Yes it’s only been a short time but i have noticed some changes.

The first day after taking half a tablet my head felt a little more fuzzier and i had an intermittent and ever so slight burning sensation around my nipples. Ooh err ….

Then next day I noticed that the galactorrhea (nipple discharge albeit i’m told it’s not milk ) had stopped.

Did you know that Prolactinomas are the most common type of pituitary tumor? Symptoms of prolactinoma are caused by pressure of the tumor on surrounding tissues or by excessive release of prolactin from the tumor into the blood (causing a condition known as hyperprolactinemia). So the tumour is secreting excessive prolactin which is turn causing the nipple discharge.

The day after taking the next half a tablet i noticed a definite improvement in libido :) Wehey!!!!!!!! :) Now albeit this is pleasing and i hadn’t lost this altogether we already know that my testosterone levels have been really low for a while and i am rather hoping that the cabergoline is working it’s magic in trying to suppress the tumour, reduce prolactin production which in turn should allow the testosterone level to come back up.

Perhaps the increased libido is a sign that this is all happening or just a side effect of the cabergoline as Nurse M at The Christie warned us against (if that’s the right word) addictions to sex, gambling and alcohol :)

Ah well it’s time to refer my handy Greenspan’s Basic & Clinical Endocrinology: Eighth Edition which was recommended to me by my pal Trys over at Acromegaly Diary.

It really is a cracking book albeit quite a lot goes over my head :)

What else can i rabble about? Oh yes not sure if i have told you but i wanted to have copies of my MRI results showing the lodger upstairs so here’s what i have done about it:

  1. Got the endocrinologist at RAEI to write a letter to the head of the x-ray department giving me permission to have copies of my MRI
  2. I hand delivered this letter to x-ray department who told me that i would have to pay £10 which i agreed to there and then. This wasn’t possible and i was told that they would write to me
  3. An invoice from NHS Trust for £10 arrived on friday 13th July 2012. I sent them a BACS payment that same day and confirmed this to their accounts department
  4. I am now waiting to hear when i can collect the disk with my mri images and i will be sharing on here as soon as i get them :)
One last thing subject before i go is my changing bite. Last week I also spoke to my dentist and brought him up to speed. I have asked for copies of all my dental records including bite x-rays to try and help pinpoint the jaw change. Should get these soon but short term i found my dental casts going back to about circ 2003.
See below images of my dental casts (if you click on an image they will open but each pickie is 2mb):
Specifically look at the complete upper/lower cast from circa 2003! That year i had a bridge and crown on the upper to remove the wonky tooth. Oh and in the pickies the 2007 cast has a tooth missing as i dropped the cast and spent an hour glueing back together :)
FYI I am going to ask for new casts to show the prognathism as the last set were circa 2007 and things have changed somewhat :(
27th-june-2012Here’s where we are at in July 2012. Albeit i am really self conscious about this i’m lucky in that i have a nice fat face and plenty of soft tissue to try and hide my bite. So if you wonder why i always pull faces when i smile it’s to try and hide the wonkyness :)


    • Thanks hun. Yep it’s amazing. They said that mine would prob not be that simple as the tumour has gone over towards the carotid artery n would only know when they get in there. Should have my MRI scans this week to upload . I asked the professor about having a ram upgrade when they are operating which he giggled at. Apparently they generally take things out not put things in :)