Looking for dry eye specialist in London Area

[lizlou29]

Hi fellow sufferers. I'm 29 and have had dry eye problems for 7 years. 5 years ago I was diagnosed as having rosacea so the eye problems stem from that. I am a patient at the Queen Victoria Eye Clinic in East Grinstead, West Sussex. Up until January this year I was able to cope fairly well with lower punctal plugs and Celluvisc drops but it suddenly worsened and I have visited the eye clinic 4 times in the last month being told that it's just blepharitis and I need to do hot compresses and the pain will go away, this was after I'd sat there crying saying I was unable to cope. This particular ophthalmologist had zero people skills and looked extremely embarrassed to have an emotional women to deal with. Next appointment I was prescribed Cyclosporine A, couldn't tolerate it and had upper punctal plugs put in place. Still in pain I went again and was given FML drops with preservative even though I can't tolerate them - was told I'd be fine. Finally went yesterday after being unable to leave home for a week and suddenly told I don't blink fully and need an operation and this was the last resort (very comforting!)

So what I'm asking is does anyone know of a good dry eye specialist in London/ South East who I could see privately and will spend more than 5 minutes with me? I have become very depressed due to the chronic pain and poor quality of life. My current regime is flax seed oil, celluvisc drops and Lid Care scrubs.

Sorry for the rambling but any help would be appreciated!

[littlemermaid]

Hi Lizlou, Sorry to hear East Grinstead was that random. Has Mr Sheraz Daya seen you? Are you seen by the same consultant each time? Is there anyone else there you want to see?

Did they say what the eye surface and cornea looks like? eg is there scarring after 7y?

There are other options, eg with eye flares from rosacea we are using preservative-free steroid dexamethosone and tapering off, stopped using Celluvisc 2y ago, now using Hyloforte and trying Emustil. We've done OK on a short course of Azyter. Just not sure about cyclosporine A but Moorfields has a choice of 3 formulations including a Restasis equivalent at 0.06% so we don't have to use Optimmune (is that what they prescribed?).

I think I would get a GP or optometrist NHS referral to cornea and external eye disease team at Moorfields http://www.moorfields-private.co.uk/Consultants http://www.dryeyesmedical.com/. They told me referral letters are assessed by an ophthalmologist registrar and allocated to a consultant clinic (some other hospitals are using unqualified or admin staff).

In my experience, if the support isn't there because of NHS clinic setup, it's important to access counselling services as well, dealing with this level of pain http://www.iapt.nhs.uk/services/.

Is your GP helpful? Do you have a regular high street optometrist for advice?

What is your rosacea like, Lizlou ~ do you have a dermatologist? Any allergies?

We're still paediatric, has anyone got experience?

[lizlou29]

Hi Lizlou, Sorry to hear East Grinstead was that random. Has Mr Sheraz Daya seen you? Are you seen by the same consultant each time? Is there anyone else there you want to see?

Did they say what the eye surface and cornea looks like? eg is there scarring after 7y?

There are other options, eg with eye flares from rosacea we are using preservative-free steroid dexamethosone and tapering off, stopped using Celluvisc 2y ago, now using Hyloforte and trying Emustil. We've done OK on a short course of Azyter. Just not sure about cyclosporine A but Moorfields has a choice of 3 formulations including a Restasis equivalent at 0.06% so we don't have to use Optimmune (is that what they prescribed?).

I think I would get a GP or optometrist NHS referral to cornea and external eye disease team at Moorfields http://www.moorfields-private.co.uk/Consultants http://www.dryeyesmedical.com/. They told me referral letters are assessed by an ophthalmologist registrar and allocated to a consultant clinic (some other hospitals are using unqualified or admin staff).

In my experience, if the support isn't there because of NHS clinic setup, it's important to access counselling services as well, dealing with this level of pain http://www.iapt.nhs.uk/services/.

Is your GP helpful? Do you have a regular high street optometrist for advice?

What is your rosacea like, Lizlou ~ do you have a dermatologist? Any allergies?

We're still paediatric, has anyone got experience?

Thanks for your reply.

I very rarely see the same ophthalmologist. There is one whom I refuse to see as he told me that he had blepharitis too and it doesn't bother him....

I have facial flushing, no pimples. My eyelids are red but corneas are white. I was told I have some corneal erosions but the next appointment I was told they were fine, he checked again then said maybe a little but not to worry. Despite my age I sometimes have to have family members with me as I get emotional and need someone to get across to them just how much this has changed my life.

My GP doesn't understand why eye drops don't remedy the problem so not much help.

Yes it was Optimmune that I had prescribed. I was told that Doxycycline probably won't help. I was tested for allergies about 5 years ago but it came back clear. I have today sent a letter to Mr. Damian Lake, the corneal consultant to detail my resent experience and ask if there is anything left other than surgery which I don't believe I need.