where is the hope

[poppy]

Where is the hope for those of us suffering from severe dry eye, outside of the US.

Even if a great treatment was made widely available in the US tommorow, it would be years and years before this treatment was even considered to be made available to me anywhere in Australia (let alone subsidised by the PBS/medicare).

Even once the treatment was made available here, eye docs have no interest in dry eye and it will take another 10 years or more before the average eye doc has even heard of the treatment, let alone routinely offers it to a patient.

The eye docs I have seen think doxy and punctal plugs are radical, new and dangerous treatments. They won't even see you more than once if they determine you just have dry eye, even if the dry eye is clinically very severe and you get corneal ulcers, keratitis etc. Restasis and lacriserts and other things are virtually unheard of here.

What is the point in hoping for new treatments. There are a whole bunch of treatments out there already, as well as diagnostic tests to help narrow down the cause. Eye docs do none of things! They glance at your eye for one second and then they tell you to go away. It doesn't matter what new treatments are discovered, until there is a magic pill that fixes all forms of dry eye, eye docs won't be bothered.

I know a lot of you in the US complain about bad eye docs. I can't even find an eye doc that will even see me more than once, and I do live in a city - they won't give me follow up visits, they have basically never tried anything. And I have severe clinical signs of dry eye. They can SEE there is a problem - they just can't be bothered doing anything about it. I can't see any hope for getting any form of treatment for my dry eye in my lifetime. I truly believe that I will eventually be blinded by total neglect of my severe dry eye and yet I will presumably still suffer pain. I am left totally on my own except for my tubes of genteal. I am on the waiting list to see another eye doc, but given that he works with other eye docs that I've seen that are completely useless, I don't hold out much hope.

I don't know how the average eye doc sleeps at night, when they spend so much of their day turning away patients in need.

[littlemermaid]

Did you PM SimpsonDesert to get together on this? http://www.dryeyezone.com/talk/showt...ght=#post57265 I talk to locals on dryeyetalk by PM who are doing the rounds of the same docs. Saves a lot of money and aggravation.

Here in south UK there has been major change over the last year. Hopefully this will happen in Au. Since LASIK became high street, every big chain optometrist is doing dry eye checks, photographing your cornea, flogging drops, referring NHS and private. I wouldn't say the ophthalmologists are up to speed but at least they look guilty. We've seen these dinosaur docs, 'chronic', repeat discharge. The difference between someone who's current on diagnosis is shocking.

Successful management seems to be about working with your ophth. I don't hesitate to shop around for opinions, present as an emergency etc. Younger ones in the hospital teams have been much more current. I've also emailed direct to big hospital corneal specialists detailing symptoms, asking who in the country to see. And they do reply. Waiting is not an option with eye inflammation. Maybe email Dr Chan, tell him your worst scenario?

Do you want to tell us what your current regime is? If you tell us your city you might get a lead. Your surface problems are serious, aren't they. Can the optometrists refer you persistently for SPK and damage? Sounds like the inflammation needs careful steroid. Maybe try an inflammation specialist if you can find one, search on uveitis.

[destina_s]

Poppy, actually I don't know what to say. I really don't have any possible solutions for your problem, just i wanted to write smts. Not exactly the same problem, i have good docs but still currently i have been asking myself the same question about USA because of Boston scleral lenses which is very expensive and which I really need to get but do not have the opportunity to get it paid by insurance like the people who live in USA do. I was thinking the same thing with you. Even though there are things that can make our lives easier, it is not always possible to reach them - at least not as easily as others. What I want to say is, i am so sorry you have experienced such a thing but don't ever talk about blindness. There is always hope, just sometimes it is hard to recognize it. Wish you a really good doc and healthier days.

[poppy]

Did you PM SimpsonDesert to get together on this? http://www.dryeyezone.com/talk/showt...ght=#post57265 I talk to locals on dryeyetalk by PM who are doing the rounds of the same docs. Saves a lot of money and aggravation.

Here in south UK there has been major change over the last year. Hopefully this will happen in Au. Since LASIK became high street, every big chain optometrist is doing dry eye checks, photographing your cornea, flogging drops, referring NHS and private. I wouldn't say the ophthalmologists are up to speed but at least they look guilty. We've seen these dinosaur docs, 'chronic', repeat discharge. The difference between someone who's current on diagnosis is shocking.

Successful management seems to be about working with your ophth. I don't hesitate to shop around for opinions, present as an emergency etc. Younger ones in the hospital teams have been much more current. I've also emailed direct to big hospital corneal specialists detailing symptoms, asking who in the country to see. And they do reply. Waiting is not an option with eye inflammation. Maybe email Dr Chan, tell him your worst scenario?

Do you want to tell us what your current regime is? If you tell us your city you might get a lead. Your surface problems are serious, aren't they. Can the optometrists refer you persistently for SPK and damage? Sounds like the inflammation needs careful steroid. Maybe try an inflammation specialist if you can find one, search on uveitis.

Hi mermaid, thanks for your reply

I did read simpson deserts very informative review on the dry eye clinic in Sydney. Unfortunately, I've decided that it isn't going to be practical for me to attend that clinic. I live about a four hour drive from the clinic (in the ACT region). If I could get some benefit out of the clinic by going there a few times, or by going maybe once or twice a year, I could do it. But I am going to need to see the doc regularly for a long time and probably the rest of my life. I know a lot of other people travel to see specialists, and sometimes for much worse things like cancer, but for these "real" illnesses there are processes in place so that the patient sees the specialist, and then the specialist provides information to the GP or local specialist for day to day care. Because dry eye isn't recognised as a real illness, there will be no such ongoing care for me. I can't imagine asking my employer for special allowances so that I could work around needing to take two days off work regularly for care for my "dry eye", especially as I'm not a permanent employee. And now, it is very difficult for me to drive at night due to my eye problems, I couldn't navigate my way through sydney in the dark to get home.

My current regime is genteal gel, as often as practical; on average about once every half hour; lid hygiene twice a day. I've tried tranquileyes at night, warm and cold compresses with little success. Fish oil and flaxseed oil have been tried, little success. Now that my eyes have become so out of control, even a few weeks of steroids (when I'm actually able to extract them from a doc) provide only minimal relief.

The last optometrist I saw referred me for my keratitis, but given my prior diagnosis of "just" dry eye his guidelines still require me to wait the 3 months for my next appointment.

I wish I could work with my ophth. The problem is they see me once and then they won't give me follow ups. I have tried booking another appointment with them and pleading my case, but they just get angry with me and have written to my GP and told him not to give me any more referrals, ruining my relationship with my GP. These eye docs have the fantasy that inflammation from dry eye/bleph etc is self limiting and just goes away for a while eventually and doesn't need ongoing care.

The next eye doc I see will be at a public hospital, I just have my fingers crossed that it will be better in the public system as they are not so profit motivated, but at the same time the eye doc I'll be seeing is a lasik surgeon and also works closely with other eye docs I've seen that have been really awful.

Yes the damage to the surface of my eye is significant, tons of inflammation etc, it's so hard to understand why after two years of this I haven't even been able to get punctal plugs or any form of regular care.

[poppy]

Poppy, actually I don't know what to say. I really don't have any possible solutions for your problem, just i wanted to write smts. Not exactly the same problem, i have good docs but still currently i have been asking myself the same question about USA because of Boston scleral lenses which is very expensive and which I really need to get but do not have the opportunity to get it paid by insurance like the people who live in USA do. I was thinking the same thing with you. Even though there are things that can make our lives easier, it is not always possible to reach them - at least not as easily as others. What I want to say is, i am so sorry you have experienced such a thing but don't ever talk about blindness. There is always hope, just sometimes it is hard to recognize it. Wish you a really good doc and healthier days.

Thanks for your reply destina_s, I think one of the major problems with dry eye is - we need ongoing care. Just like people need a regular GP. You might be able to travel once or twice to see a doc but - you will still need to access some kind of care back home.

[littlemermaid]

The next eye doc I see will be at a public hospital

Yes, we saw one 'county corneal specialist' who was so cruel after I requested follow-up and referral onwards after 4 discharges and flare-ups he told me to 'be quiet', refused to answer questions, refused further treatment. And LM is a child. She was on FML 3 x daily for chronic inflammation with no IOP checks. This is because they are not up to date about dry eye and trying to get rid of us. I did report this one.

In UK you can queue-jump into A&E for inflammation and pain if you need to, although this does not always result in follow-up.

I am hoping your hospital team will have docs who understand the corneal destruction problems at least ((hug from LM and I)), a bit of support would be nice.

[irish eyes]

Hi Poppy

Another hug won't go amiss.

You are so right; we do need ongoing care. My experience in the early days was exactly the same as yours - I don't think attitudes have really changed that much but I'm better informed now - and can stand my ground with more confidence.

The head of the city eye department trivialised my dry eye problems to the point that I really did wonder if it was me. I meekly accepted that my case wasn't that bad and tried to manage on my own for a few years - until I could hardly function and had to ask my GP for a further private referral.

Professionals tend to `pull rank' and that is what happened on this occasion - my eyes had worsened through neglect but of course no one was to blame. I have a good rapport with my current consultant; things are far from ideal but at least I have someone keeping watch. `

[SAAG]

Unfortunately, I've decided that it isn't going to be practical for me to attend that clinic. I live about a four hour drive from the clinic (in the ACT region). If I could get some benefit out of the clinic by going there a few times, or by going maybe once or twice a year, I could do it. But I am going to need to see the doc regularly for a long time and probably the rest of my life.

Hi Poppy,

Not sure of your entire eye situation, but I can certainly relate to the whole using genteal gel every 1/2 hour... for me, it was every 15-20 minutes leading up to my flare up.

Anyhow, if I were you, I'd first check into what the laws are re: time off work to see a doctor - it you are entitled to the time off by law, then TAKE that time. If your boss is upset, they'll get over it... do your best to explain your situation in a way that they will be able to relate to and the benefits that could be gained from that specialist appointment and go for it. I was sooo worried about work and how they would react to stuff before...I stressed so much about it, lost sleep over it... but once I explained it all to my boss (ex. eyelids sticking to eyeballs, literally couldn't keep eyes open if I over did it, feeling like sand/glass in my eyes, sharp stabbing pains if I overdid it, constant burning, spending several hours per day at home with a cold cloth over my closed eyes), my boss could see plainly that this was BAD... he got it. I made him understand that I cared about work too and wanted to be able to be a highly productive employee, it's just that it would take some time for my eyes to get there... Anyhow, I know not all bosses are capable of that kind of empathy, but it's worth a try, isn't it??

As for the concern about the regularity of the appointments, in case this helps, this was my experience. After my first appt, I went back in a month so he could see how I was doing with the plugs and Restasis... after that, I went every 3 months for the next year... now, we've pretty much tried everything, so I told him I'd just go back and see him in a year. I'll go back sooner of course if I need anything. Anyhow, this was all worth it, because although I'm far from normal, things are at least livable now.

You have to fight for the health of your eyes... initially, pretty much everyone has trouble understanding our kinds of problems... makes it hard to advocate for yourself since it's such an uphill battle... but once you get through that, life can be good again...

Please don't give up... if that specialist knows what they're doing with dry eye, or even if they don't, as long as they have a heart and are open to learning from publications such as the DEWS report, it will be worth all the trouble to see them... the long drive totally sucks, but if they can help you, it will be soooooo worth it. Once things get under better control, you won't have to go as often...