The MDT diagnosed a meningioma slow growth , decided to watch and wait. They didn’t do the scans as promised and his condition deteriorated. Finally I pleaded with his consultants secretary to ask for help as we didn’t know what to do to ease his symptoms which had become unbearable including double vision,hallucinations,neuralgia,headaches etc.. Medication was prescribed and an advanced position on the waiting list for surgery. The hospital trust management and patient experience both acknowledged that his care had been poor and that they sent most sincere apologies . The date was cancelled several times for over a month, but finally admitted 2/12/2021. He recovered well and some of the pain had eased. We were encouraged that ( although it was a different type of tumour), they had managed to remove about half of the tumour (due to the position of it near to the carotid artery and the optic nerve). An MRI 1 month later finally told us that the histology told them that the tumour was a pituitary macro adenoma, small haematology , fluid on the brain and many hormonal problems affecting different parts of the body.. He was sent home with many outpatient appointments /treatments with the endocrinologist team.
His blood results were showing high prolactin and a suspicion of acromegaly. The plan has been changed to dual medication: Cabergoline tablets and monthly Stomastatin injections, both .with many side effects. To review after 6 months then if no shrinkage then radiography. His prognosis is worse and still is unable to partake in previous enjoyment.
I also have poor health, am now losing eyesight and may not be able to drive. I also have two daughters with special needs, so I am very worried about the future.
Sorry to post such a long entry but it’s just an account of our experience.if anyone has had experienced anything to do with pituitary adenomas i’d Love to hear their story.
.Pituitary macroadenoma
