Severe dry eye signs and still told to get lost!

[poppy]

I have what I assume would be considered severe dry eye signs (or signs of a similar disease). This is based on comments from optometrists/opthamologists when they examined my eyes such as:

"Wow, you've obviously had a problem that has been going on for years/a long time" - similar comment twice and no the problem had only been happening for months.
"There is a lot of inflammation in the eye" - a couple of times
"There is a lot of pitting/scarring/the entire bottom third of the eye is damaged/scarred" - similar comments a couple of times.
"There is a lot of corneal irritation"

I have had a corneal ulcer/scarring of the cornea as well as other ulcerations on my eyes.

Obviously, I have a lot of pain/discomfort that can be very severe at times.

Still, opthamologists have just told me to use artificial tears and lid wipes and get lost (apart from steroids a couple of times when they were really bad). No tests other than a quick glance at the eye and putting the yellow dye in once to check on an ulcer. They won't even take me on as a regular patient and see me once every 6-12 months to check up on the damage. They make it clear not to come back eg they say "I won't suggest any further appointments for you..". The opthamologists I've seen were rude and hostile.

When I asked what I should do when I thought I had an ulcer, I was just told to "keep using the tears". The implication was clear - don't come and bother me when you have an ulcer because I don't care, and no I won't try and fit you in ASAP (standard waiting period for an appointment is at least one month for an existing patient, a bit late if you have an ulcer that isn't healing).

Most of the opthamologists in my city are associated with the same eye hospital and have the same "policies", so there's not really anywhere for me to go. For example when I asked to try doxycycline I was told "we don't like to give people this because it has side effects" (meaning all the doctors at this place won't prescribe doxy). I had to argue and be subjected to questions about my sex life to get to try the doxy for a few weeks.

I can't believe I live in a developed country (Australia), AND I am willing and able to pay for medical care and yet, cannot access an opthamologist who will even ATTEMPT to help me.

[rooneyandfergie]

Hi poppy,

I have pretty bad severe dry eyes though not to the extent of having corneal ulcers yet. I have experienced what you have with doctors many times. I don't know what's the deal with eye doctors. They are trained to deal with eye problems but don't seem interested to treat dry eye nor are they interested in the quality of life issues we face constantly.

I have had pretty bad eye pain and went to see an eye doctor once. I had to travel overseas for a business trip the next day. He then told me he couldn't give me any medications since i was gonna be out of the country for the next few weeks and he couldn't follow up should i have any issues such as allergies to any medications he might give. I then told him i will come back again after i return to seek medical treatment for my condition. He was like you don't have to come back if you don't want to. It's like he didnt feel the need for me to come back. It got me quite irritated.

I don't know what you can do with the insensitive eye doctors since you mentioned that all the doctors in your city seem to be this way. I guess it's not about whether you have the money for medical treatment. I think the issue with dry eye is that firstly doctors dont really know the cause behind it. Hence, there arent like real effective treatments for it. THe only prescription medication with an indication for it is Restasis. it only works for a portion of people and is only effective to a certain extent. furthermore, it's expensive.

[Rebecca Petris]

I am sorry. That is just dreadful.

Ignorance in a doctor isn't always fatal - if they care enough to help, you can educate them. Unkindness in a doctor isn't always fatal, if they're knowledgeable, and you're willing to tolerate horrible bedside manners for the sake of their skills. But when they combine willful ignorance with gross unkindness, it makes for an appallingly bad medical team.

[poppy]

I don't know what's the deal with eye doctors. They are trained to deal with eye problems but don't seem interested to treat dry eye nor are they interested in the quality of life issues we face constantly.

Nor do I understand what their problem is (although I strongly suspect it is due to dry eye patients being less profitable). When they were training to be an opthamologist, they would have understood that unless they are training for something highly specialised, a large percentage of their patients will have dry eye or similar conditions. Yet they still seem to feel annoyed/put out etc when they get a dry eye patient. It is like a dentist who complains about having to fill teeth, or a general practioner who gets angry whenever someone brings their child in with a cold/flu. Or a psychiatrist who tells someone with mental illness hey, you know this is a chronic thing so why don't you just toughen up and get on with things? This behaviour wouldn't be tolerated by the public in other areas of medicine, so why do we have to put up with this from opthamologists?

[Rebecca Petris]

Nor do I understand what their problem is (although I strongly suspect it is due to dry eye patients being less profitable).... It is like a dentist who complains about having to fill teeth, or a general practioner who gets angry whenever someone brings their child in with a cold/flu. Or a psychiatrist who tells someone with mental illness hey, you know this is a chronic thing so why don't you just toughen up and get on with things? This behaviour wouldn't be tolerated by the public in other areas of medicine, so why do we have to put up with this from opthamologists?

Corneal specialists are usually not very interested in corneal disease. Their interest lies in corneal surgery. To someone like that, dry eye patients are the least desirable type because they take a lot of chair time and are never happy.

I don't know much of anything about doctors in Australia. But in the US, to get good care, patients have to either find a gem of an ophthalmologist who actually likes corneal disease (rare but you can find them if you look) or a well educated optometrist who knows their demographics well enough to realize it's in their best interest to be known as the local dry eye go-to-guy/gal. For optometrists, dry eye is bread & butter - one of the most frequent complaints patients walk in the door with. Not so with ophthalmologists.

[poppy]

I don't know much of anything about doctors in Australia. But in the US, to get good care, patients have to either find a gem of an ophthalmologist who actually likes corneal disease (rare but you can find them if you look) or a well educated optometrist who knows their demographics well enough to realize it's in their best interest to be known as the local dry eye go-to-guy/gal. For optometrists, dry eye is bread & butter - one of the most frequent complaints patients walk in the door with. Not so with ophthalmologists.

As far as I know most optometrists in Australia don't deal much with dry eye. Of course they will give basic advice to use gels or drops etc, and they can put the dye in your eyes to check for dryness, ulcers or damage to the surface of the eye and can refer to an opthamologist. Most optometrists here operate attached to glasses/contacts stores in shopping malls and the focus is on glasses and basic eye exams. They have very limited ability to prescribe medications etc so I don't think they would be able to help severe dry eye patients much.

Of course if anyone in Australia knows of optometrists who can help severe dry eye patients I am happy to be corrected. I wish that optometrists could take a more active role in helping us but in my experience they don't really seem to be empowered to help beyond the very basics.

[SimpsonDesert]

Specialist Dry Eye Clinic in Sydney (Australia)

Poppy,

I can relate to everything you say about the dismissive attitude of the Ophthalmology profession to dry eye, and agree with your speculation as to the motive. Disgracefully, while the management of this condition is entirely within their professional sphere, they cherry-pick what they will and will not treat; Optometrists however well intentioned are hobbled in the treatment options they can offer as they are unable to prescribe drugs, and sympathetic GPs obviously are not able to evaluate the eye.

That said, there is a very good specialist clinic here in Sydney whose Dr Chan has literally given me a life again. If at all possible, given the suffering you seem to be having, it might be worth a consult. Visits are monthly after the initial evaluation and are medicare claimable; a referral from an Optometrist or GP is needed for the claim.

Dr Colin Chan MBBS, FRANZCO
Ophthalmic Surgeon
Level 2, 75 Grafton St
Bondi Junction NSW 2022
(02)9387-4355 (ph)
(02)9387-5573 (fax)

A systematic approach is taken, backed up by monthly tests - osmolarity, schirmers, TBUT and misc visual checks. There are no magic bullets, just the usual treatments intelligently applied. In my experience, patience over many months and strict compliance is required, with the occasional discouraging setback part of the experience. Please feel free to PM me if you wish, and check my earlier posts for more detail.

Regards, Simpson Desert (now blooming after a few good showers!)

[jads]

As far as I know most optometrists in Australia don't deal much with dry eye.

Poppy, I do feel for you. I live in Melbourne and have felt the exact frustration you are referring to. My Optos shelves were full of products and he mentioned he does see a large number of dry eye patients - a lot! But sadly, as you suggest they don't have many options apart from treatment of symptoms. From memory he gave me lacrilube which is awful stuff. I used it once and never again.

You ultimately need to get to the root cause, which is easier said than done. unfortunately.

[bvendig]

opthamologists

i've had very similar experiences. Most ophthmologists just seem totally disinterested and i never understood why. I think i see now that it just isn't a money-making issue. it requires a lot of time and doesn't really result in any revenue. i have an appt tomorrow with an optometrist so i'll let you all know if that's any better.
hugs, betty

I have what I assume would be considered severe dry eye signs (or signs of a similar disease). This is based on comments from optometrists/opthamologists when they examined my eyes such as:

"Wow, you've obviously had a problem that has been going on for years/a long time" - similar comment twice and no the problem had only been happening for months.
"There is a lot of inflammation in the eye" - a couple of times
"There is a lot of pitting/scarring/the entire bottom third of the eye is damaged/scarred" - similar comments a couple of times.
"There is a lot of corneal irritation"

I have had a corneal ulcer/scarring of the cornea as well as other ulcerations on my eyes.

Obviously, I have a lot of pain/discomfort that can be very severe at times.

Still, opthamologists have just told me to use artificial tears and lid wipes and get lost (apart from steroids a couple of times when they were really bad). No tests other than a quick glance at the eye and putting the yellow dye in once to check on an ulcer. They won't even take me on as a regular patient and see me once every 6-12 months to check up on the damage. They make it clear not to come back eg they say "I won't suggest any further appointments for you..". The opthamologists I've seen were rude and hostile.

When I asked what I should do when I thought I had an ulcer, I was just told to "keep using the tears". The implication was clear - don't come and bother me when you have an ulcer because I don't care, and no I won't try and fit you in ASAP (standard waiting period for an appointment is at least one month for an existing patient, a bit late if you have an ulcer that isn't healing).

Most of the opthamologists in my city are associated with the same eye hospital and have the same "policies", so there's not really anywhere for me to go. For example when I asked to try doxycycline I was told "we don't like to give people this because it has side effects" (meaning all the doctors at this place won't prescribe doxy). I had to argue and be subjected to questions about my sex life to get to try the doxy for a few weeks.

I can't believe I live in a developed country (Australia), AND I am willing and able to pay for medical care and yet, cannot access an opthamologist who will even ATTEMPT to help me.

[poppy]

Thanks for the suggestion RE dry eye clinic in Sydney. I will give seeing Dr Chan some thought. I guess it will cost me about $1000 per appointment (lost income, travel etc as well as Dr Chan's fees) and I would need to commit to at least say 3 months or I'm not really going to get any benefit out of it at all. I'm not so much worried about the cost but more afraid of the mental devastation of feeling really "ripped off" if he doesn't help me and knowing that now there is DEFINITELY no help whatsover for me anywhere in the country.

Some people get anxious or depressed, I just get angry. I think about how much I hate opthamologists all the time. I know it's not healthy but I can't help it. I would just love to know where one of them lives so I could take my car keys down the side of their BMW or post a bag of fresh dog poo through their letterbox. I wouldn't be upset if the opthamologists I've seen had been upfront and actually advertised the fact that they don't do dry eye and related conditions, or stated that they don't want to see anyone who doesn't need a surgery. If they'd been honest, I wouldn't have bothered to see them in the first place.

It's not fair when a patient waits through three months or more of pain to see a doctor who presents themselves as a general opthamologist, the patient pays $150+, takes the day off work, travels for 45 minutes or more, waits 2 hours+ in the waiting room and the doctor just tells you to shove off because they can't be bothered!

Next opthamologist that tells me to shove off is not getting paid. I've thought it before but now I've made a commitment. The only way opthamologists will start treating us fairly is if they don't get their money. No other service provider would get away with treating their "customers" in the way most opthamologists treat their patients.

[SimpsonDesert]

Hi Poppy,
In my (non-professional) opinion, 3 months would be the bare minimum of committment - so far as healing your corneal surfaces, I have read that the replacement of cells is on a 90 day cycle, like blood cells, so the process is very gradual and people discontinue treatments too early due to apparent lack of progress. Also, sometimes the steroids etc initially hurt and can seem to be making matters worse.

Speaking very generally here, I'd be cautious about expressing vengeful thoughts that could be construed however remotely or rhetorically as any kind of a threat, as it can make life interesting for the moderators who are only private citizens helping others out. Also I suspect from another fourm, that some of the real stinkers in the profession get to know what's said.

Having had bad experiences with Drs, it is tempting to be fighting "last year's war" with the person who is actually prepared to help you. When I went to the dry eye clinic, I too felt that it was literally my last hope for any life at all, and could scarcely bear to consider the prospect of disappointment. There are no guarantees or exotic treatments (my circumstances are post-surgical, yours may be different) but at least the problem is acknowledged as real (!!) and the best available treatments applied and most importantly, properly monitored. Consider too, that you may not have been correctly diagnosed yet, and perhaps the ulcers are not associated with dry eye as such?

The best outlet for anger is to do something practical and concrete that will advance the cause. Write well-expressed complaints to the relevant professional bodies, your local member etc. It seems pointless at the time, but such things do add up, and the matter is for once on public record. Angry people get much more done than depressed ones, so you have a role to play!

Why don't you PM me.

Regards, SimpsonDesert