A few questions

[member_41389]

Hi
Interestingly we had a talk by an ENT surgeon at the Bristol local support group meeting last night. "Crusting" appears to be the term they use for what happens when the glands that produce mucus aren't kept damp enough - the mucus is too thick and can't flow properly so dries and forms the crusts which then attract infection and cause airflow problems as well as nasty odours. His go-to suggestion was to use https://www.boots.com/neilmed-sinus-rinse-kit-10077009 Neilmed sinus rinse. (it's cheaper on Amazon and elsewhere). I did that post surgery for about 6 months and have had no issues since.
The talk was interesting including a bit of video shot during an operation showing getting access to an adenoma - the camera had a diameter of 4mm and the tools 2mm!! Apparently if you have shakey hands you need not apply for the job.
All the best
Tim

[Carl]

Thanks Tim, I never knew what crusting actually referred to - I know it was pretty uncomfortable for him to dig the crusting out!! Even though he sprayed anaesthetic up my snozz first. I agree that for me the post-surgery sinus issues did go away, although I'd swear my left nostril is still prone to being a bit more mucky for no apparent reason and is always the worse nostril when I get a cold. But all in all, can't complain (much).

Neurosurgeons really are wizards!

[TCP]

The variability in the NHS really annoys me, so many times you see posts from people struggling like yourself to get drugs from your GP or a level of service from an Endocrinologist. I consider myself very lucky because it has been relatively straight-forward for me. My Endo wrote a letter to my GP right at the start saying I needed emergency injections of HC, this letter is scanned onto my patient record, and they have always been fine prescribing replacements when they time expire.

The constant infections/sinusitis suggest that something isn't right up there, my Endo/surgeon/ENT had follow up appointments with me after surgery and I had several ENT appointments where he inspected the sinuses to make sure there was no "crusting" that could habour infection - I think he was referring to blood scabbing. So although rather unpleasant and invasive, the ENT went up my nose and removed said crusting on several occasions and insisted on continuation of the sinus rinse, until I went back and he was happy all was healing well.

I've never heard of a Gonadotrophinoma! Don't be coming off that Hydrocortisone until a Synacthen test proves you don't need HC any more. Another annoyance of mine hearing of so many people where the Endo thinks the patient will gradually be able to be weaned off HC. Certainly in my case my Pituitary gland is permanently damaged, it isn't suddenly going to produce ACTH even assuming my adrenals even remember how to produce Cortisol.

As for getting drugs, I haven't had any problems, but as you said I've heard of the injectable HC shortage, so I'll cross that bridge when I come to it!

Many thanks for your reply and I apologise for being a bit late to respond.

Yes, it seems to be hit or miss regarding treatment and I don't know I always feel that doctors are quite dismissive of me despite me having so many health issues. The original letter from the endo team to my GP surgery was pretty basic and mentioned hypopituitarism but I don't think that was detailed enough.

No one has been involved from ENT during my entire journey only the endocrinologists and a professor of neurosurgery. My breathing has been terrible and I have struggles breathing anyway because of EDS and POTS. No one has shown any real concern. I can't breathe at all through my left nostril despite steroid sprays and rinses.

I had a synacthen test at Easter time and it would seem that the endocrinologist that I saw in February must have got it wrong. I saw the pituitary team yesterday and went through all of my symptoms and I got no reaction or feedback from any of them. I squirmed because I felt like the 2 endo's, the neurosurgeon and two nurses were just staring at me. Horrible. It lasted about 8 minutes. One good thing was the fact that because of a previously booked MRI for my head, neck and spine, for next month, they have tagged onto that to have a contrast with it.

I think the issues obtaining HC injections is hopefully over and I have received some of the liquid form which expire in November.

All the best and I think in future I will speak or be in contact on here for any help. I feel quite isolated to be honest.

[member_41389]

Hi TCP
Please keep in touch through the forum.
There are very few pituitary patients in the country and so there is relatively little awareness in the general population of "Medical Professionals". One result of that is that they end up on the defensive when faced with the odd-ball; that's us. We try to support each otherthrough the questions and uncertainty. Sadly it seems that each pituitary patient has a different journey because the combinations of ways in which things don't work properly feels infinite. However the combination of the endocrine nurse and open helplines, this forum and possibly local support groups are there to fill the gaps as well as possible.
Take care of yourself
Tim

[TCP]

UPDATE:

Saw the ENT specialist I have multiple adhesions in my nose because the neurosurgeon chose not to pack my nose after surgery and I have lost most of my sense of smell. I was told by the ENT specialist both of these conditions were avoidable. He wants to go ahead with surgery but I am too unwell to undergo any more surgery, I don't think my body can take it.

I have to continue with the hydrocortisone, which I expected as I have been taking it since 2017. My health is going downhill because of my numerous other conditions. My body hair has not returned. I will see the endo team later in the year and to be honest I haven't been happy with the whole unit there. It is nigh on impossible to get the endo sister to respond when I am having problems. Ah well, I suppose I should be grateful for the NHS while it lasts.

I wish everyone well and I hope you are as well as can be.

[Carl]

Hi TCP. That is such disappointing news regarding your health as well as how you were treated with the surgery.

As far as I am aware, nose-packing after trans-sphenoidal surgery is 'standard', but no matter this far down the line as it is too late. I would say I did lose a small amount of sense of smell, but not totally.

As for body hair, mine only returned once i had been on a stable dose of Hydrocortisone and started taking Testosterone (mine took 6-12 months to return). If yours hasn't returned this suggests that your hormones still aren't right. Is it possible to get a referral to a different hospital or even pay privately to see someone like Prof John Wass who works in Oxford http://www.johnwass.org.uk/ ?