My husband’s surgery was cancelled se... - The Brain Tumour ...

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My husband’s surgery was cancelled several times only to find that a wrong diagnosis has made his prognosis much worse.

Ashers12 profile image
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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

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Ashers12
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Debbyh profile image
Debbyh

Hi Asher,I too was eventually diagnosed with a macro pit tumour. That was in 2019 and it’s been a long journey. Where about in the UK are you?

I’d be happy to talk or PM am off to work now so sorry post is short.

Debby

Ashers12 profile image
Ashers12 in reply to Debbyh

Hi Debby, Many thanks for your reply and details of your experiences. I do hope that you continue to improve .My husband had his operation at Addenbrookes Hospital, Cambridge under the care of Mr. Richard Mannion, whose reputation is world renowned.

In a post-operative ward round, my husband didn’t see him - (asleep), but was later told that they had removed approximately 60% of the tumour- much more than expected.

However the histology report revealed it was a different type of tumour: pituitary adenoma - and immediately we were then under their specialist care of the Endocrine Unit They have been fantastic but many tests, scans, he has just been started on tablets, injections and possibly radiotherapy. Apart from the lack of pain, he still has the same symptoms (incl double vision) and is looking forward to many anti-social side effects from the medication! I didnt intend to be an illness bore but it seems that way doesn’t it..! Sorry. Take care.

Debbyh profile image
Debbyh in reply to Ashers12

Hi,Hope you and your husband are doing well.

I hope your husband's double vision improves, mine has turned out to be permanent although to an extent I've learned to live with it and can still drive.

If your husband ever has any questions about my journey I'd be happy to help, I've been through both chemo and radiotherapy.

Good luck, Debby

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