Two weeks after Endoscopic Transsphenoidal Surgery

It’s the night before my second set of blood tests (since surgery) and as i am fasting for tomorrows Glucose Tolerance Test at The Christie thought i’d take the time to update you and waffle on :)

It’s near enough two weeks since the surgery to remove my functioning pituitary gland tumour ( macro prolactinoma). The first week post pituitary surgery wasn’t too rough at all.

This last week has really seen an extension of the first with a steadying improvement and the following experiences (not symptoms as i’m on the mend!):

(Don’t read on if you are at all squeamish)

  • the nipple secretion caused by the tumour spitting out prolactin otherwise known as hyperprolactinemia has stopped! Fantastic a huge tick in that odd little box ;)
  • the right side of my ample sized nose (which the surgeon went through) has gradually cleared this week
  • now breathing through left side of nose but not blowing or sneezing
  • nose doesnt drip during the day like it did and really only get a couple of drips of a yellow/red fluid during the first 30 mins of getting up
  • only seem to get blood coming out my throat in the mornings. it’s really dark in colour and must be due to lying down over night etc
  • the stuffy/head/fuzzy head that I had pre-surgery has definitely gone
  • I have only been getting headaches or dull sensations above my left eye in the morning and early evening so I stopped taking painkillers 7 days in
  • concentration still seems some way to go. Just seem to struggle focusing
  • my energy levels albeit improved are nowhere near where they used to be. Fair to say that I am better but come mid afternoon i get tired and lethargic. I have been on a few moderate walks but it seems to wipe me out
  • still taking my hydrocortisone tablets daily and think I have less than a weeks supply left. Sure that Christies will arrange an insulin tolerance test to check if I need to stay on these moving forward
  • I’ve started talking with what I can only describe as a little echo or vibration in my nose. Really weird and almost like a stereo effect
  • the roof of my mouth behind my top teeth (yes they are my own) is still numb and feels a bit odd
  • I’m drinking normally with no excessive thirst
  • I suspect that albeit the prolactin secretion appears to have stopped my testosterone level hasn’t recovered yet. I thought it would as prolactin suppresses it but I’ve arranged some experiments for later in the week ;)

So what’s the status with Surgeon and Professor?

Well the surgeon’s secretary K rang earlier this week to say that Mr G wasn’t all that worried with the results from the post op MRI but that he will hold back deliberating on any possible further action until he has sight of the results from the Glucose Tolerance Test tomorrow. Again this sounds great!

So all being well I will have the tests tomorrow and get to have a quick chat with the Professor or one of his Registrar’s (who are great) and get a heads up. Then we should get the test results back later this week and we will know more :) Mr G was adamant that he doesn’t want to wait a week for these results :)

For the academics, my blood test results pre-surgery:

  • IGF (151nmol/L : ULN was 39.9)
  • Prolactin was raised 2289 and 1390 at presentation
  • GH glucose tolerance test results were 5.6, 4.2, 4.9, 5.0, 4.4 mcg/l

Three days after surgery my GH day curve mean measurement was 1.3 and I think the unit is ng/mL for it. I was told by Dr B that this should really be less that 1.0 post surgery.

Next day the Glucose tolerance test results highest reading (not mean for this test) was 1.2 (ng/ml), the lowest reading was 0.8 (different unit from pre-surgery??) and Dr B said that this should be less than 0.4 post surgery. At face value these results don’t seem too bad to me :)

Now as i’ve been so interested by my old tumour :), the surgery and Acromegaly that I came across a great book to read Management of Pituitary Tumors: The Clinician’s Practical Guide and it arrived from India today! I’ll let you know what it’s like.

That’s it for now! Improving and very much putting the worst behind me :)

I’ve said it again and i’ll say it again! Thanks to my family, friends and the NHS.

Lastly a mention for an old family friend Dr Davendra Kumar who passed away this week after a long fight with cancer. A terrible battle fought with dignity and strength! Last time I saw him I was blown away by his positivity and the strength of Judy and the children. It’s been in my mind during my journey.

Davendra was an amazing man! What an example he sets to the rest of us RIP. Love to Judy and family at this very sad time.

8 Comments

  1. Ah that’s great news Richard! Lets hope your results continue to improve. I’m sorry to hear about your friend, very sad! Love to his family. Best wishes Richard, take good care and hope tomorrow goes well. Val xx

  2. Richard,

    Here’s hoping that your OGTT is wonderfully low tomorrow. Your numbers are going in a really brilliant direction – that’s wonderfully exciting!!
    As for the noise that you hear when you are talking, it may well be an incredible bogie in your left nostril that you can blow out nicely when you fully heal. In the mean time however, see if you can play some comical tunes with it.
    Every morning, I blow my nose and get the same shape every morning (it’s a bit like the shape of India I reckon). I like to think that Dr KG has left me a souvenir. It’s very good of him, because I’m very grateful (more for the op than the bogie).

    Keep your pecker up mate,
    Trys

    • Thanks Jim ;) Great appointment today and the key hormones have come down even further since the last set of results. Does look like most of the tumour has been removed but need to wait a few more days for other results come back to prove. If there are any residual bits they will consider a second op or radiation. Told should be a few more days ;)