Very disappointing consultation at hospital

[unicorn]

Well, after nearly three months of waiting, I was finally seen for the first time by an ophthalmologist today.

Can't say I had my hopes up, especially after hearing informally this guy isn't known for his bedside manner, but even so - completely gobsmacked by just how uninterested and dismissive he was.

Looked in my eyes for all of 30 seconds - not even under the eyelids. Pretty much sat with his back to me through most of the consultation while I desperately tried to hold it together and explain my symptoms and ask questions. He was vague, evasive and unhelpful. Wouldn't give a straight answer when I asked if, in his view, I had ocular rosacea. Dismissed questions about lagophthalmos without explanation (despite me being told previously I have an incomplete blink). Also dismissed any questions about allergies since I've had negative blood tests for hayfever-type allergies. I am completely in the dark about what any of my current clinical signs are (as opposed to my subjective symptoms) since he wouldn't tell me anything!

He's basically written out a prescription for steroid drops and Vismed and told me to come back in 6 weeks (can't say I'm looking forward to that day very much!). 'Ocular surface disease' was all that was written on the slip I had to hand in to my GP.

Anyway, to remain positive, I went in to my lovely local opticians on the way home and explained the situation - they were very sympathetic and helpful (I'll admit to a few tears when I went in!). They said they've had a few people come in there after seeing this particular consultant.... anyway, I've made an appointment with them for 2 weeks time to assess how things are going, and I'm confident I'll get a much more thorough examination and useful advice. They also mentioned they would be able to refer me to a better consultant at the hospital if necessary. The two optometrists who run the practice both have dry eye conditions so they have much more of an understanding and interest in treating patients.

Anyone able to offer any thoughts on the steroid/vismed combination? I've to use them 2x day for 6 weeks. Bit unsure about this relatively long-term steroid use, to say the least.

Thank heaven for Dry Eye Zone.

[irish eyes]

I cannot comment on the specific combination but I assume the steroid would be to reduce inflammation.

Was the prescription for prednisolene minims?

[unicorn]

I can't remember exactly what the prescription was for I'm afraid... I handed it in to my GPs and won't get it until at least Monday. Prednisolene minims doesn't ring a bell.

(Note to self- try to make a note of exactly what you've been prescribed!)

Yes, the steroid is presumably to reduce the inflammation - which it probably will do, but I don't see the long-term point, if the root cause can't be identified and addressed.

[irish eyes]

Steroids are not a long term solution for this condition; i have used them on and off for several years and they have got me through plenty of bad patches. You should have your ocular pressure monitored as routine when using steroids.

[littlemermaid]

Unicorn, I would find someone else interested in dry eye pronto and in it for the long term, and unless you've got inflammation and pain and he's sure it's necessary, consider holding off the steroid. Not without the bond of trust in the ophth. This is what they do, blitz with steroid with no other treatments, and they actually said to us 'sometimes this just goes away'. No. We've all seen 'em. Sorry to be so strong. It is not my place to comment on a prescription. I haven't got time for this attitude any more. How dare they purport to be skilled in corneal disorders. Check out the side effects for the steroid - FML has the best profile, it has seen us through the bad times, as Irish says, but it's not preservative-free. Sounds like he's just trying to get through the day. A lot of us are self-managing ongoing problems but with the guidance, advice and tools to do the job.

Presumably he didn't assess whether you had mgd or what's happening to the tear film or whether he sees signs of allergy.

Choice of tear substitute is personal as long as it doesn't have preservatives or make things worse - we've tried plenty like everyone here.

I'm thinking, ask the optometrists for a decent dry eye exam, and start doc-shopping. I don't mind tetchy in an overloaded clinic these days but they have to be right.

[robster]

Unicorn I don't know if you went through the NHS but in my dealings with NHS ophthalmologists I have been left amazed at their lack of dry eye knowledge. The UK is so far behind North America in terms of eye care it is unreal.

[unicorn]

Presumably he didn't assess whether you had mgd or what's happening to the tear film or whether he sees signs of allergy.

You're spot on. He didn't. This is what took me aback so much - just no information. Really don't know what to do now re the steroid. FML sounds familiar - think it might have been this he prescribed. I'm in so much confusion now - don't know where to go from here regarding 'doc-shopping'. Certainly I think I will get a good examination at the optometrists and also they should be able to advise me on which consultant to see - but I don't know how to get an NHS referral quickly, and I don't really want to have to wait either esp if I'm stuck as to whether to use the steroids or not in the meantime... Perhaps I'll have to bite the bullet and get a private referral to someone they recommend.

So confused.

[littlemermaid]

Yes, what an unhelpful post I did. How are your eyes feeling? We've been using FML for 3y to control inflammation flareups in blitz and taper regimes, with no raised pressure (needs checking first time within the week of starting, thereafter, regularly - find an optom with a tonometer that doesn't need anaesthetic eyedrops, like iCare, we've got enough eyedrops). Do you know how to check the meibom? That would be a good start. Do you think you have sensitivity to contact lenses and chemicals?

We go NHS long term follow-up for the meds and equipment, and private sometimes for the chat, but you might be able to find a combo that suits you after you've researched who's available locally with these optometrists depending on the state of the NHS provision. It's individual who's read the latest research but it's usually someone in a teaching hospital, teaching, or young and very professional.

From their point of view, a cornea doc could give us the low-down after a high-speed assessment and a standard prescription and tell us to try a few things to see what happens. But we need more than this. And this is how they forget to tell patients basic stuff like warm compress and hygiene, avoiding allergies, and how we end up worse blitzing the eye surface with chemicals. And then we're back clogging up the clinic.

You're looking for healing. It means finding a doctor you're comfortable with and can ask questions. These people are out there more and more on these disorders. As the NHS budget is squeezed, I can imagine there are more long-term people with contact lens, surgery and allergy problems in the clinics who don't look like a quick-fix, whereas when some of these guys trained, these problems did not exist. I swear we saw a cornea 'specialist' who hadn't read a journal since 1976 - he really did not recognise meibomian gland dysfunction (as far as I know, Thygeson noticed it in the 1930s and Heinrich Meibom found the glands in 1600something).

Hopefully, your optometrists will help you stop all chemicals in and around the eyes to give the surface a chance to heal, and look at allergies, and improve meibom. Could be FML would help to control inflammation but the rest has to be done too. Unfortunately if it was the contact lenses and solutions that set this off, FML has preservatives. There are steroids without preservatives in Minims but not so good profile. Here's the maestro in case you haven't seen it Dry Eye Disease video by Dr Baudouin

Dry-Eye-Workshop(DEWS) Just in case you haven't ploughed through this yet for ideas.

http://www.dryeyezone.com/talk/entry...essing-dry-eye Hi Robster. Rebecca put this up for us in her blog.

Unicorn, I'm finding that with kind doc and optometrist support it's all good and we can manage this well. It just takes a while to find the docs you want to work with - they're all useful in different ways but once you find the type of regular support you want, and we're all good internet-shoppers and networkers are we not?, things will look rosier. <hug>

[sazy123]

Unicorn, I would seriously look in to avenues for reporting him!! if enything else, just for his dismissive attitute. Im not sure how you do it, but im sures theres a procedure. Also, write him a letter saying how you feel!

The NHS suck with dry eye, they dont help, they dont see dry eye as important. Maybe if they were living with it- they would see it differently!!


Thbis sort of thing, makes me not want to come back to the UK- dry eye treatment is so much better here. But i miss my family.

[unicorn]

Sazy123, thanks for that. I don't think I want to go as far as reporting him. However, I think I am going to go and see my GP next week and I will certainly voice my concerns there. Sorry to hear you miss your family, that must be tough. How long have you been in the States, and are you planning to come back to the UK eventually?

Littlemermaid thank you for all your replies, even ones written in the heat of the moment - all good advice and all appreciated more than you probably realise. I have been thinking about this very hard all day. The way forward I am currently considering is: get the name of the best consultant (in this field) from my local optician, visit my GP and request a private referral for a 'second opinion' (whilst making sure my GP knows the reason I am unhappy with the consultant I saw yesterday). In the meantime probably hold off on using the steroid drops as I feel uncomfortable about using them under the supervision of someone in whom I have little trust.

What do you feel about this course of action? (Please don't feel under pressure to reply if you feel you can't, I understand - it's just I don't have anyone I can ask advice from, really). I'm not sure how to go about requesting a private referral or second opinion, but I do want to talk to my GP about all this. I'm also not sure how long it will take, and what to do about the follow-up appointments - hoping I could get these through the NHS.

As for how my eyes currently feel - well, not as bad a few weeks ago I think. Not burning nearly as much. But I've not been using the contact lens solutions, so if there was an allergy there, this should be resolving. Still dry, esp at night/first thing in the morning, and dry, aching and tired in the evenings. Still a bit red. Less red inside the eyelids generally, although quite inflamed in the mornings and probably a little redder after warm compresses. I am pretty sure I am sensitive to chemicals - I would say my eyes feel slightly better on days when I've not used any drops, although obviously without the short-term relief of dryness which I get from using drops.

Quality of the meibom - difficult to say exactly. I think it seems clear, in that I can't really see any white/yellowish stuff, and my vision clouds over after a massage, so there's something coming out. Definitely less coming out though in my right eye, so not sure if chronically blocked or just not producing oil (my right eye is more symptomatic too). I was kind of hoping the ophth would tell me something about the state of the meibom yesterday - ha! When he asked if the doxycycline was helping I was tempted to say - well, you tell me! (as in, what can you actually see happening in the glands?! - likewise with 'can you still see signs of allergy'?)

Trying to 'forget' about it for the rest of the weekend until I can actually do something about it, but I guess it's useful thinking time.

[littlemermaid]

Hi Unicorn. I am very hopeful for your healing now you are using less chemicals in the eyes. We are very much better on frequent dropping with normal saline 0.9%, and for a more clingy lubricant drop Hylotears. The MGs are pretty much restoring with the usual measures and although it looks like chronic dry eye still, the improvement on reducing chemicals has been wonderful. She is travelling in Europe with school and reporting back on eye symptoms in different locations. You would think the worst would be the airconditioned coach and lack of sleep but no, that's been OK because of sleep masks, sunglasses and drops. The worst was a particular hotel room but other rooms have been great - but why would that be. It must be allergies. But not normal nose-running and sneezing allergies. The rosacea skin is similar - we're still identifying triggers, which shampoos etc. Hope this train of thought helps you.

With private sector I phone up and book direct with the consultant's private secretaries who are keen to keep him/her busy because their income depends on it - it's amazing how fast they can see you. GP gets a copy of the consultant's letter, that's all. Wouldn't it be nice if the GP thought about these conditions for us and knew what to do but, you're right, the dialogue is important. An unfortunate carry-over from the old days is that they aren't always so hot on knowing who actually does what rather than who they've met through the golf club or at doc school (I speak as one who had to hand round the nuts as a child, be seen and not heard, yet no one ever said don't observe) - but we can also research docs online. The GP needs to know how the consultant treats patients so they can choose where to refer people for various conditions - there's currently no other feedback system and GPs are now the budget holders.

There's an issue that you must keep follow-up in an NHS cornea clinic to access treatments and monitoring and build up a nice history. If someone you've seen private will take you on NHS, that's great. But private/NHS are entirely separate. And the private sector is getting even more caveat emptor - the deal is between the doc and patient, even when an insurer is paying some of the cost. Insurers are capping their payouts these days too, esp on consultant's fees <pauses to enjoy the moment> (suddenly that NHS job doesn't look so bad...), but the unsuspecting patient is liable for the rest. Plus, of course, they charge for every needle and wipe, plus basic tests we can get in Specsavers for free. If something needs backup, like raised eye pressure, follow-up can be a problem and it's back to the high street optometrist or NHS for regular checks but they are not always clear about this - like a quack at the county fair, gone by morning... Just rapping on the topic to give more of a perspective on what we're doing here. So what I'm paying for is access, advice and guidance on treatments from gurus when we need it but keep on regularly in the NHS, like Karjade has done.

Good luck on your journey. This is just our experience, the very opposite of advice, but I think you're doing all the right things, building good relationships with helpful people

[robster]

Won't let me delete entry entirely, sorry I didn't read all the comments in the thread my bad!

[unicorn]

Robster - no worries, easily done!

Littlemermaid, very happy to hear your daughter is doing well on her trip (and hopefully having lots of fun into the bargain). Very interesting thoughts re the allergies. It's a long, slow task playing detective in these matters. I wonder what it was about that particular hotel room? Things like bed sheets, washing powders, cleaning chemicals, dust mites, mould spring to mind as the obvious ones although I am sure there are many others. I'm not getting such obvious moments of rosacea flare-up as your daughter (my skin is pretty much the same every day) but I am still thinking allergy or sensitivity is important to consider. Have you been down the route of allergy testing? as in, chemical hypersensitivity patch testing. This is also something I'm considering.

In my case, my eyes got a lot worse when I stopped wearing my contacts. So, being exposed to more irritants/allergens? As well as possibly just drier - think the contacts were in a way acting as 'bandage' lenses. My eyes are most inflamed in the mornings. Thinking of changing washing powders, using anti-allergy pillowcases etc. Also considering a sleep mask, although a little worried it won't be comfy to sleep in - does your daughter use Tranquileyes, or similar, and does it help?

Regarding the private referral - having slept on it I'm now thinking: visit GP and discuss situation, explain concerns about consultant. I'd like to ask for a prescription for saline minims too. I think I might wait until I've been seen at the local optometrists in a couple of weeks to ask them about referral to the cornea specialists as I still think it may be possible to get this NHS seeing as how I'm due to go back for a follow-up in 6 weeks anyway. It may well take a bit of persuasion and persistence and asking the right questions of the right people.

[littlemermaid]

Unicorn, I'm still wondering how to get help working out what she's sensitive to - food and environmental - because the derms are saying this hypersensitivity isn't a contact allergy response they can test for, although we have, at last, got referral for testing for possible autoimmune disorders which I'm hoping might include immunology, depending how interested the doctor is.

Blitzing the bedroom for allergens was very helpful and we realised tree pollen was coming in through the open windows, even my eyes felt itchy. A humidifier has been helpful while she's working on the computer. She won't use eye protectors except sunglasses and I think this would have helped a lot. She likes Blephasteam though which creates a moist environment and keeps the glands good.

Hope the GP knows what to do and you find your dry eye specialist soon.