Waiting and waiting – then resolution

Endoscopic neurosurgeryArrive at  0950 says the letter, so we do.  What the letter did not say was that we would sit for an hour and a half along with a further 7 or 8 groups of people with no information about what was,  or was not,  happening.  We realised that we had not seen anyone come in or out of the two doors labelled for ‘my’  doctor and his registrar .  Previously we had been dealt with promptly and efficiently.
Dare I go downstairs for a coffee and a magazine, or might I miss my place by being absent when I was called?

We are called and Dr Rob Murray is a gem! Full of rapport and empathy; rarely (and certainly not so far in this journey) have I come across anyone, let alone a doctor, with such stunning levels of empathy and willingness and ability to engage with me. We talk about the challenges of running a clinic not knowing how long each patient will take, the Biobank project, his achilles problems and a host of other stuff before we get down to business.

Firstly we review the blood tests and the Glucagon Stimulation results. My Testosterone is below low and my Growth Hormone is almost zero, but apart from that everything is OK. The plan is to see what happens to these when the adenoma is removed although as I am not suffering any of the classic symptoms of low GH (excessive tiredness) it might not need supplementing anyway. It seems that sometimes production of these hormones returns once the pituitary is no longer stressed by the adenoma.

He shows me the MRI scan (2mm resolution rather than the 10mm used by Biobank) which clearly identifies an adenoma about 28x24mm. The pressure on the optic chiasm is demonstrated (that seems to be the trigger to ‘do something now’) along with how it surrounds the carotid, has pushed the Pituitary aside and may have even deformed some bone due to the long-term gentle pressure. He points out some patches that suggest it has ‘died’ because of lack of blood, explains why radiotherapeutic approaches are unsuitable (too near the optic nerves) and the lack of pharmaceutical approaches to large non-functional tumours.

The message is clear – it needs to be taken out, by transsphenoidal surgery. There is no realistic alternative – indeed no alternative.

I’m fine with this. We talked about ‘wait and see’ but he was insistent that because of the existing impact on my visual field, it needed removing.

So on to surgery. He explained the implications of transsphenoidal surgery, using an endoscope up the nose, cutting a small piece of bone away to access the pituitary and the devilish adenoma before sucking most of it out while leaving the bits around the carotid alone. This last bit had worried me “Could it grow and squeeze the carotid closed?” Apparently not – phew!

How much will they take out – as much as they can consistent with not risking the optic nerve and the carotid.

This was my first real chance, and based on the rapport we had established I asked “Just how good are the surgeons with whom I am scheduled?” I was pleased that this did not faze him one bit and he went on to explain the innovative techniques that Nick Phillips had been using and that since he took over certain procedures the outcomes were well above average. All encouraging.

I was surprised at how easy it was to commit to surgery – perhaps the lack of alternatives and the prospect of ever-reducing visual fields with the implications of losing my driving licence made it easy. Oh, it seems that I must tell DVLA about my condition! Hope that my visual field is not so bad that I lose my licence! I need Form V1, available on the internet  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/452228/V1.pdf

Finally, now seems to me to be the time to disclose to others what is going on. I have not wanted to do this so that others didn’t get unnecessarily worried, but now I am in full knowledge of the facts it seems to be a good time to let people know. That is the subject of the next piece.

With such a positive experience I am left wondering how best to bring my story, which could have been better, to the attention of those who run LTHT. It’s not been bad, and that is partly because I am pretty fatalistic, don’t see the point in worrying about stuff that I cannot control, and recognised early (although not early enough) that this was not terminal!

And I came across a very helpful resource explaining the surgical procedure http://www.mayfieldclinic.com/PE-EndoPitSurg.htm

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