Questions to ask consultant

[kingofvarden]

Hi Dr. Hagan and others,

My appointment with the retinal consultant is in a couple of days (haven't had my eyes looked at since July) and I just thought it perhaps worth brainstroming to see what some sensible questions to ask her might be. My inclination at present is not to ask too much and just to let her get on with it.

History if you remember - RD right eye 14 months ago following PVD. Aphakic in both eyes following complicated congenital cataract surgery. Brilliant outcome so far with the RD - no vision lost whatsoever and all entirely stable. Vision wasn't brilliant to start with but that's another story. Lots of worry about the future and in some ways fear severe physical pain (from surgery or end-stage eye disease) almost more than blindness. Haven't experienced any so far but realise that my eyes are "difficult" to manage, particularly with any complicated surgery. Becoming increasingly better able to cope with all this fear and worry and find that regularly speaking to a counsellor helps (in my opinion, should be standard for pretty much all RD patients!). But it sometimes does still strike, sometimes very intensely, and it may be that this will never go away in spite of its impact lessening over time.

Questions to ask (if any) - the main thing I want to do is to keep this about (a) my own individual eye; and (b) my own consultant's practical experience in dealing with people like me. I know that long-term predictions about the future are virtually impossible, and also that things are probably about as encouraging as they can possibly be at this stage. I don't want to ask about just generalised stats or things like that, since I know a fair few of them already from online reading.

Any thoughts about sensible questions? She is an enormously sympathetic, compassionate and caring person. I'm not going to have much time with her so any thoughts about things to ask would be useful. This is all assuming a completely clear exam, of course (I haven't been getting any major unusual symptoms recently, and since my pupils dilate very poorly I'm thinking that it's most likely if things ever did go wrong again that I'd probably know about it before the doctors).

[MrPresley]

Good news thus far then.  Fortunately I have been limited to seeing (pun intended) only my regular optometrist, who referred me to both my retinal specialist and a cataract surgeon.  So far no glaucoma consultant needed.

[kingofvarden]

Aha - I'm pretty well used to eye exams. I've been seeing a glaucoma consultant every year for my whole life, since as a congenital cataract patient I'm at lifelong risk. Up until this retinal trouble I had almost come to treat the yearly exams as a bit of a game and I could virtually tell the doctors what the acuities and pressures were going to be before they did the tests. Somehow, although I was getting a barrage of tests from the hospital every year, the risks of actual eye problems never seemed real to me until my recent RD. Eye exams are never going to seem like a game ever again.

[JohnHaganMD]

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[kingofvarden]

Just to update you all. Appointment reassuring on the whole. Acuities unchanged. Pressures very slightly elevated so I am increasing the dose of eye drops to two a day. (Not too concerned as I have had blips like this before and my corneas are thick which probably elevates the readings a bit anyway). Retinas flat and no tears or other abnormalities apparent. Very sensibly, it seems to me, she didn't want to get into the numbers game about future risks - she just said that it was probably the case that after over a year since my op, my operated eye was likely now safer than the other eye. She said it had been quite a challenging repair given that I'm aphakic and have small pupils. Given my complex eyes she is not discharging me and will be seeing me again in 10 months. I will be checked over by both my optometrist and my glaucoma consultant between now and then.

[MrPresley]

I see my retinal ophthalmologist every six months and have been diagnosed with (so far non-symptomatic) macular pucker in my right eye, after having had a successful ERM surgery/vitrectomy in my left eye.  He does OCT scans in both eyes at every visit, and retinal photography every other visit.  A peripheral horseshoe tear of the retina in my right eye that I never knew I had was successfully laser-treated in his office on my first visit.  I make it a point now to look at an Amsler grid on my own periodically to keep on top of any vision changes that might occur between visits.

[kingofvarden]

Thanks MrPresley. My optometrists thought they were possibly picking up mild traces of macular oedema and/or epiretinal membrane in the operated eye last time they did the OCT, but nothing very significant. I asked my retinal consultant about it in May and she said there was nothing obvious of this sort she could see. Peripheral tears are always more difficult to spot for me because of poor pupil dilation, and also I think I'm likely to get very small tears being aphakic. When I had my detachment, although everybody could see the detachment itself, two ophthalmologists and an optometrist couldn't find any trace of the originating tear and only my consultant found it.

Amsler grid sounds like a good idea every so often for me. At the moment everything SEEMS to look straight as it should, although picking up subtle deviations would be quite difficult for me given that this is such a weak, lazy eye anyway.

Hope all continues to go well with your eyes.

[JohnHaganMD]

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[MrPresley]

Thanks @kingofvarden, I have some residual cystoid macular edema as well in my operative eye.  Of course the almost obligatory cataract surgery was successfully performed about a year and a half after the vitrectomy.

[JohnHaganMD]

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[kingofvarden]

MrPresley - that's one advantage I have in being aphakic - no cataract surgery necessary after vitrectomy. There aren't a lot of other advantages, I have to say, as I am rapidly coming to discover. It was only once all this retina stuff struck that I started to realise that the aphakic state (with open capsules) can be a bit of a problem, especially where complex retinal surgery is concerned. I now believe my RD eye probably had two capsulotomies - once when the cataract was removed at 1 year old and another when I was 8 years old. I certainly have no memories of any vision whatsoever in it before the age of 8, but I can't believe they would have just left the capsule to quietly cloud over when I was 1 year old. Apparently the vitreous leaked forward a fair bit during the early cataract removal in one of my eyes - don't know which but I think it might have been the right eye again. Certainly the RD eye has had much more in the way of past surgery than my good eye, which has only had one op so far (the removal of the cataract at 1 year old) - so it's possible that all the extra surgeries has made the right eye a bit more liable to complications! - don't know, and I don't think anyone currently working on my eyes has the full history going back 40+ years. Hoping for no further complications since with my complex eyes the RD journey is likely to be even more of a roller-coaster than it is for most people!

[MrPresley]

I think I may have lucked out on my formerly cataractous (if that is even a word, lol) eye not ever needing a follow-up YAG capsulotomy.  It's been nine months now.

[kingofvarden]

That's good, MrPresley. It was inevitable with me because you pretty well always get capsule opacification after childhood cataracts. It was pre-YAG laser days and also from what I gather they don't do YAG laser so much on children anyway. Certainly what I think was probably my "second capsulotomy" (it was certainly called a capsulotomy, whatever else) was a 14-day hospital stay and I remember them getting me to lie for long periods in a certain position, probably to stop the vitreous coming forward....Well, it ended up coming forward, but 33 years later, with the consequences one might expect!

[JohnHaganMD]

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[JohnHaganMD]

You can confirm with her that the biggest risk of another RD is in the unoperated eye and ask her to try and quantitate it.  Given you are aphakic some studies would put the risk as high as 25%.  Ask for her advice on activities to avoid to lessen the change of RD.  Be sure you see a general ophthalmologist yearly to keep track of other eye problems like glaucoma. Live a healthy lifestyle as the older we get the more our general health affects our vision.

[kingofvarden]

Thanks Dr. Hagan - that's very helpful. I was aware of the possible 25% risk in my good eye. There has been vitreous separation in my good eye starting 7 years ago with very clear symptoms of new floaters and again new ones 2 years after that - so far nothing untoward has happened and I'm trying to keep my hopes up as much as possible, but I know there can still be unusual adhesions and they really have to treat this as high risk (my consultant has certainly said this). I get yearly glaucoma checkups with an ophthalmologist at the hospital (fields, pressure check, dilation and checking back of eye) as well as yearly checkups from an optometrist who checks pressures, dilates and also checks the back of the eye as well as doing OCT. Both are now routinely doing their best to scan my peripheral retina as well (in both eyes) now that RD has happened.

[JohnHaganMD]

Okay sounds like you are taking all reasonable precautions