My pituitary tumour history - Barry's story

In May 1994 I went for my regular two yearly eye test (I am short sighted) and after the test was handed a letter by the optician to take to my GP.

Eye Close Up

He sent me to Bolton hospital to see a specialist who confirmed that I had some loss of vision in my left eye. He conducted a series of tests with a follow up in June of that year to Manchester Eye Hospital for further tests. I saw the specialist again in July who explained that my loss of vision in my left eye was a common problem and it would go away in a month or so.

A further visit to my opticians in November ’94 showed a considerable improvement in my left eye vision. However in November of ’96, two years later my regular optician (Boots) again found a deterioration of vision in my left eye and my GP sent me back to the specialist at Bolton.

He diagnosed Macular Atrophy and that it was irreversible and not treatable.

Just over 12 months later, in January 1998, I was suffering from tiredness and hot flushes. I visited my GP who conducted blood tests, could find nothing wrong and referred me to a general medical consultant at Chorley hospital.

Between February and June of that year he sent me for a range of tests including blood tests, bone marrow tests, 24h ECG, chest X-ray and ultrasound scan. He thought that I had non Hodgkin’s lymphoma but none of the test results confirmed his diagnosis.

At my last consultation he put me on 4 Dixarit a day to combat the hot flushes and told me to come back in 6 months time if the symptoms didn’t improve.

In July of that year (1998) I again went for a regular eye test at my local opticians, (Sutcliffe’s of Chorley) who sent me back to my GP. Although I didn’t know it at the time the optician had found reduced visual field in both eyes and suspected a brain tumour.

After that things happened quickly.

During the next 3 weeks my GP sent me to a consultant neurologist who sent me for an MRI scan which showed a pituitary macro adenoma which had enclosed both optic nerves, severely affecting my sight.

I was sent to Salford Hope hospital and had a bifrontal craniotomy to remove the tumour. It was a 7½ hour operation to remove the tumour and disentangle it from the optic nerves.

The surgeon, Mr Charles West, did a wonderful job, managing to save all my sight in my right eye but my left eye was too damaged to make any improvement.

At a follow up meeting with the surgeon he explained that my right eye had responded well and was back to normal vision but my left eye had not recovered at all. I explained that it wouldn’t as I had Macular Atrophy in it.

At this suggestion the surgeon looked at his registrar and then changed the subject. It appeared to me that he didn’t believe that diagnosis, and on returning home, I discussed the previous history of my sight loss with my wife and it appeared to us that the timing of the sight loss was consistent with the growth of the tumour and that the tumour could have been the cause of my original problems in 1994.

I wrote a letter to Bolton hospital with my medical history and suggested that the tumour could be the cause and that the diagnosis of Macular Degeneration was wrong.

In reply I received a letter from the eye specialist strongly refuting that suggestion and that the original diagnosis was correct. And that is how the situation remained until two weeks ago when I went for my normal 2 yearly eye test back at Sutcliffe’s of Chorley.

After the eye test the optician asked, out of curiosity, what had caused my major sight loss in my left eye. I explained that it was a combination of Macular Atrophy and my pituitary tumour. She explained that they now had available digital imaging technology that could take a picture of a cross section of the eye which would confirm the cause of the problem.

She explained that if you had Macular Atrophy in one eye you would probably get it in the other and although still incurable, diet and some drugs can slow its progress. I had the test and it confirmed that I did not have Macular Atrophy in my left eye but that the atrophy was caused by the tumour. 

Although this technology was not available in 1994, when my symptoms first appeared, there were other tests available that could have differentiated between a pituitary tumour and macular degeneration.

So, in conclusion the medical profession has failed twice over 4 years (1994-98) to correctly diagnose my problem with the result that I only have some peripheral vision in my left eye.

The general medical specialist failed to give a diagnosis and the eye specialist made the wrong diagnosis.

The lessons to be learnt from this tale are two fold.

Firstly, don’t accept what the doctor tells you if you any suspicions that he may be wrong. It is a lot easier now to do research on the internet to help you get a correct diagnosis.

Secondly, get a good optician and keep with them, they always say that looking into your eyes can tell you a lot about your health and they are right.

Finally, I think we should all give as much support to The Pituitary Foundation as possible.

They do invaluable work in supporting patients and educating the general medical profession so that diagnosis of pituitary problems becomes higher on their list of possibilities.

 

Dr Barry Culpin

Member of The Pituitary Foundation