Is it time for opthalmologists to be less esoteric and more transparent about their work?

It is very hard to get information from opticians, optometrists and opthalmologists. They seem to like to obfuscate more than enlighten their patients. Can anyone suggest a good website which explains in simple terms what their job is all about? I had a deterioaration in the sight of both my eyes overnight (I now need glasses for driving and increased magnification for reading). GCA was not admitted by my GP but after a battle, I now have the diagnosis, and after seeing eye doctors, all they could say was that there was no sign of GCA on the retina. However, I was told on fairly good authority that the vessels at the back of my head could have got sticky and caused a clot, thereby causing the sight loss. Patients should not have to fight for information about their eye-sight. The information should be forthcoming and accurate. I think there is a lot going on which the ordinary person is not aware of, including defensive behaviour to protect other professionals from legal claims.

[Celtic PMRGCAuk volunteer]

Hi Wendy, my ophthalmologist has told me that as they are generally not the first point of referral for a patient suffering from GCA, the patients they do see are those whose vision has already been affected. So, in other words, and to be fair to them, I think they rarely see anyone diagnosed with GCA before the blood vessels at the back of the eye are affected.

[polkadotcom]

I'm a little surprised that you find them difficult to get along with. Like Celtic, I know that they are rarely the first point of referral, in fact often at the end of a long list.

As someone who needs a diabetic retinopathy every year, I have always found them only too pleased to explain it all to me.

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Hi WendyUK,

This is a difficult one. If an opthamologist does a " normal " examination of your eye and finds nothing to report all that means is the examination that they have done hasn't revealed anything. If you had sticky vessels which caused a clot then I would imagine that's what would be seen on examination.

I know from membership of another forum that some eye problems caused by vasculitis ( GCA is a large vessel vasculitis ) don't become apparent until examinations such as ultrasound of the eye and fluorescein angiography are used by opthamologists who have a wealth of experience in vasculitis.

I have had blurry vision for over a year now and for most of that time have required reading glasses despite having no visual problems in the past. The opthamologist says there is nothing wrong with my eyes and blames the blurriness on high dose steroids, my jaw pain is caused by either TMJ or idiopathic facial pain ( depending on who I see in Max Fax ) and no one has an explanation for my headaches. My Rheumy is treating my myalgia, arthralgia, fatigue etc with steroids and mycophenolate but can't give me a diagnosis and doesn't feel all my symptoms are linked.

I don't feel my Dr's are lying to me but I recognise that they are constrained by the limits of their clinical experience. I hope you will have more success than I have had at getting answers.

Best wishes

Keyes

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This is quite a useful page for Opthalmologists: webeye.ophth.uiowa.edu/DEPT...

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I was diagnosed with PMR despite having classic signs and symptoms of GCA, placed on 15mg of prednisolone. I visited my optometrist for a base line because I have glaucoma in my immediate family. Pressures and peripheral vision fine but an anterior subcapsular cataract was detected. My GP rapidly reduced the dosage, leaving me with headaches and deep anxiety. One morning I awoke having had a noticeable deterioration in my eyeisght. I saw my optometrist. Pressures OK and no sign of GCA but he confirmed I would now need glasses for driving and increased magnification for reading and computer work. I asked the cause of the eye-sight loss and was told, "Maybe you were tired!" I didn't reply to this but he has lost clients on account of it. After 4 months on a diagnosis of PMR, I attended the Walk in Eye Clinic at my local hospital. When I saw the triage nurse, she said “You are in the right place for GCA! We know all about that here!” I cried with relief, thinking I would get a referral to a consultant and sufficient prednisolone. After waiting 4 hours to see the Opthalmologist, I explained that my relationship with my GP was breaking down and I had no steroids. He did a pressure check (which was not needed because I knew the pressures), he explained rather patronisingly I had mild cataracts but he would not recommend surgery (I have no intention of having surgery), and that my sight was 'normal'. The fact that I had GCA without diagnosis and had already had sight loss was totally ignored in favour of trivialities that had nothing to do with why I said I was there and why I waited for 4 hours to see this .... on the strength of the triage nurse who very confidently told me that I was in the right place for very necessary assistance. He did explain that he was “just an eye doctor" and not a Rheumatologist and I explained I had not managed to get a referral to a Consultant, had headaches on both temples, and the overnight sight deterioration when my steroid dosage was radically reduced. He asked if I had a headache at that particular moment, which I didn't. This ‘Eye Doctor’ was of no assistance in managing to prevent further deterioration of my eyesight. He repeated several times the phrase “That’s fine” every time I mentioned further sight damage. I had to say "No, it's not fine!" about 4 times. At one point he compared his sight to mine, saying that I had better sight than he did!

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I had a similar experience with opthamology. A&E referred me when I presented with blurry vision, headache and jaw claudication on a background of a years history of bilateral hip and shoulder pain, weight loss and fatigue. I had started steroids 10 days previously. The locum opthamologist pronounced there was nothing wrong with my eyes, when I asked him to consider my blurry vision in conjunction with my other symptoms he replied I only look at the eyes, you will need to go elsewhere for your other symptoms. Needless to say I arranged to see the out of hours Dr later on who increased my steroids.

I think that Celtic is right, also I know another person commented on this forum that their Rheumy was trying to improve the care that Optho gave to patients who presented with GCA type symptoms but no signs at the back of their eyes.

The main thing is that more education is needed amongst all the different specialities on being aware of and diagnosing GCA. My vision is still blurry, my peripheral vision isn't great and I can't read now without glasses but there is nothing showing up at the back of my eye.

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Opthalamologists might not 'generally' be the first specialist to see a GCA sufferer, but they are often the first to see undiagnosed or mismanaged GCA and therefore have no excuse for obscure, misleading, dismissive, sarcastic or other fifth rate treatment. Not all GCA sufferers have a headache ALL the time! Just because he did not see evidence of GCA on my retina, it did not mean I did not have untreated GCA (especially as I had lost already some of my sight, confirmed by the local optometrist). His behaviour was extremely neglectful and placed me in danger.

So my second visit to the same local hospital Walk In Eye Department, I saw a different Opthalamologist (also hopelessly inadequate) who I asked again 'what caused the overnight deterioration in both eyes' and he said after some shuffling and avoidance, "If you have GCA (said with a slight sneer) the vessels at the base of the head can get sticky and clog up!' I would have liked more information but I sensed a reluctance to imply I had a stroke due to insuffient steroid due to a misdiagnosis of PMR instead of PMR and GCA from a GP. All these experts seem defensive to involve another doctor in what could be a valid complaint by a patient. Where is their integrity and who has priority, their colleagues or their patients?

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Wendy I was trying to be both sympathetic to you and even handed towards opthamologists and medics in general, it would appear that I have failed on both accounts!

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It would be very difficult for me to feel even handed about the specialist treatment I have received. What you say is up to you Keyes, I must be honest, and my bad experiences echo many others that have spoken to me. When Opticians and Opthalmologists are consulted, there are many signs of many illnesses that can be revealed through their tests, but they rarely inform the patient of their findings. If I had a stroke that resulted in the confirmed deterioration of my eye-sight, that information should have been made explicit and any obfuscation was irresponsible.

[polkadotcom]

I don't think you can tar them all with the same brush, WendyUK. Those I have met and dealt with over the years have never been anything but professional and helpful. Opticians cannot diagnose, all they can do is refer you to your GP in any case. I'm very sorry that your experience has been such a bad one, but I'm sure many of us have had similar experiences in other departments.

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Opticians cannot diagnose but they can sometimes receive indication that trouble is brewing yet have no responsibility to report any finding to the patient. We do pay for these services either directly or indirectly. The local hospital I visited as a walk in patient was something like one might have the misfortune to attend in the third world. The celebratory "oh! you can read down to the bottom line" was because I guessed at two letters out of a possible seven or eight on the bottom line. However, I don't wear small dotted eye-glasses, and this remark was said after the reading for my good eye, she made no remark about my bad eye which only saw down to the third row! The use of the word 'normal' to describe my sight infuriated me. One wonders what they would describe 'above normal' as being, and would appear not to have an expression for less than normal. I really should send them an English language dictionary so they can improve their communication skills. Definition of the word 'normal' here: oxforddictionaries.com/defi...

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I have glaucoma in my family, so prednisolone can increase eye pressures, so this needs monitoring. I have GCA and this can affect eye-sight, so this needs monitoring. I have diabetes, which can affect eye-sight, so this needs monitoring. I think I had a stroke, which caused an overnight deterioration in my eye-sight, so this needs monitoring. Losing further sight is causing me considerable anxiety. I am allowed one free eye test at my optician once a year and when I see an optician, they are interested in one thing only - selling me a new pair of glasses! I think the patient should have a report of the sight test (eye pressures, etc), not just a prescription for glasses. After all, the government pay opticians to perform many tests during the annual eye-test.

[greylife in reply to Hidden]

Good Morning Wendy, it's Betty from Canada. I felt your frustration on hearing your story. I am a 40 yr practiced now retired Registered Nurse, 25 of them in hospital including 15 yrs emergency/recovery . I learned long ago that medicine is not an exact science, NO ONE can possibly know everything, and listening is not a skill many people are adept at, this includes physicians. My story has nothing to do with your particular situation, however, suffice to say that I have a beautiful, intelligent, 18 yr old granddaughter, wheelchair bound, with CP and spastic quadriplegia due to (in my opinion) medical incompetence. Jaundice was observed and reported by nurse 6 hr. post delivery. (a situation on hindsight, demanding a billirubin blood monitor) but nothing was done other than charting an observation. Mother (my daughter) and child were discharged one day post partum and a nurse reports "still jaundiced on discharge." Nothing Done! One week post partum mom & babe do required GP visit and infant's jaundice very obvious. GP , the family doctor did nothing, said nothing other than baby's good. Apparently her jaundice became worse & when I saw her again at one month she look yellow but parents were confident she was well and her colour "very improved" . I was worried. Both parents btw are teachers.

Bottom line? ALL PHYSICIANS circled the wagons. A Lawyers toyed with me and gladly took my money and generally toyed with my investigations ( and I spent a year on this) . I knew what lie ahead for this family and especially this beautiful child. I was working at the time with the Canadian National Institute for the Blind and doing visual testing on multi handicapped children .

The upshot to all this is MY OBSERVATIONS, HOSPITAL RECORD OF NURSES OBSERVATIONS, meant NOTHING. AN IGNORED bilirubin rise was all that counted and of course one was never done. So I can advise is

[greylife in reply to greylife]

Sorry, last thought: All I can recommend is LET IT GO! Move on and be alert. Don't second guess yourself. If you are concerned seek help, do you due diligence and carry on. All the best .

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Useful link: patientconcern.org.uk/

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and useful link here: patientsknowbest.com/

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Dear greylife, I apologise as I had not to see your post and have just discovered it. I can't imagine the distress of such an immense family tragedy. It must be a greater hurt that such suffering could have been prevented so easily. I also feel for the difficulties of medical professionals who burn out due to work stress. Medicine is not an exact science, how right you are! But I do wish they would be more humble and willing to express their inadequacies. I think we can expect a high level of competency and still understand when accidents occur. I am sorry this happened and I'm pleased I noticed your post incase you thought I had ignored it. My very best wishes for the future.

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Polkadotcom - please see this page from the Royal Institute which states that Opthalmologists do diagnose GCA. They are often the first to do so: rnib.org.uk/eye-health-eye-...