Sorry for the radio silence

Since i last posted i received a summary from Mr G the neuro surgeon about my recent MRI and scan. Here’s the major content from the letter:

“Diagnosis:
Acromegaly
Left-sided pituitary macroadenoma
OGGT awaited and raised IGF1
Hyperprolactinemia (prolactin 2,289)
Asthma and supraventricular tachycardia

Further to our discussion I reviewed this pleasant 34-year-old web designer together with his
partner and her mother in my outpatient clinic. I note that he has been suffering with dental
problems for a number of years and was eventually diagnosed to have
acromegaly this year. On closer questioning he also admitted to intermittent duli headaches
frontaliy, snoring (but not sleep apnoea) galactorrhoea and increased sweating but denied
any major changes in his hands and feet size.

From an endocrine perspective I note that he has a significantly raised IGF (151nmol/L: ULN
was 39.9) and his prolactin was also raised (2,289 and 1,390 at presentation), with evidence
of hypogonadotropic hypogonadism. I note that he was due to have an OGGT and I would be
grateful if you are able to forward the growth hormone results for our records.

(The results for OGGT were 5.6, 4.2, 4.9, 5.0, 4.4, 5.0 mcg/l)

Since the diagnosis the patient has also been on Cabergoline (for 4 weeks) with
improvement in snoring and galactorrhoea. More recently he has been on daily injections of
octreotide (for approximately 3-4 weeks), without any major change in his clinical state.

MR scan of brain (June and September 2012) continues to show a sizeable left-sided
macroadenoma with areas of cystic change and encroachment into the left cavernous carotid
artery loop. I suspect that the cavernous sinus is indeed involved although this can be further
confirmed at the time of surgery. The optic chiasm is not significantly compromised.

I have spent some time in clinic today going over the scan findings and treatment options
(surgical, medical andlor radiotherapy). Given the size and shape of the tumour I estimated
that surgery is approximate 60-70% likely to achieve disease remission and the patient is
aware that should early testing suggest residual tumour, re-exploratory surgery is an option.
Surgery (endoscopic transsphenoidal approach) carries <0.1% risk of major complications
(carotid and optic chiasm injury) and approximately 10-15% risk of lesser complications such
as infection, bleeding, CSF leak, neurological deficits, nasal symptoms, pituitary dysfunction,
need for lifelong hormone replacement and other general medical complications (chest,
heart, DVT/PE etc.). The patient understands the above and is happy to proceed. I have
arranged for him to attend the pre-operative clinic in due course”

Now the good news……. I HAD THE CALL YESTERDAY AND I’M HAVING SURGERY ON MONDAY 5TH NOVEMBER.

Yes MR G has cancelled his fireworks party and is instead firing up his surgical rockets and going in to do battle with my pituitary tumour.

Albeit I was hoping for sooner and literally ticking the days off, a date is better than no date.

I’ve already bought my pyjamas (just need to sew up those nasty flappy bits at the front) and Crazy Pat’s sorted a not so new dressing gown (don’t ask).

How am i feeling?

Since i have come of the meds the tiredness and fuzzy head has sneaked back in but all in all i’m ok. Thanks for reading. Speak soon.

4 Comments

  1. Brilliant. This should bring your blood results back down with a bang nicely. :)

    Well those were the same odds I got from him Richard, and I’m fine now (two and three quarter years later). He said you are pleasant too. Now that’s a bonus, he’ll do an extra good job on you.

    He’s a medical pioneer of the “early postoperative” Growth Hormone testers, to see if he needs to dive straight back in (search for his research, thankfully his amazing spelling of his surname makes the search easier).

    This is excellent news!

    • Thanks for your message :) Yes all good news and literally counting down the days!

      Will research your latter point.

      Hey I got a nice email from a gent called Greg who has acro. Hope it’s ok as I mentioned your blog and told him about your experiences etc. Thanks and take care, Richard