Needing Advice

[cindyv]

About 15-20 years ago, I had the symptoms of what I now think is dry eye. This problem was only in my right eye. I went from doctor to doctor to try and get some help. At that time, there was no web and I had no idea what was going on, but the excessive tearing, the mucous discharge, and finally my inability to even keep my eye open at night combined with the pain was literally ruining my life. Finally, one doctor gave me some drops, had me patch my eye at night, and use a gel. After about 6 months of this treatment my eye was better but not to where it was. At least I could live with the reduced symptoms.

Fast forward to today. About 2 months ago, my right eye started to act up again and I am where I was 20 years ago. I suspect that this incidence may be associated with hormone changes. I have done lots of research and am very saddened to find that help is not abundant. I live in Northern Ca. and have Kaiser health insurance. I went into Kaiser about a week ago to see an eye doctor. I was literally treated with disdain. Basically, she said there is nothing that can be done and I should just use eye drops for relief. I tried to have an intelligent conversation with her talking about treatment options.

I had already been doing the hot compresses for Blepharitis and the eye cleansing that offers me relief for about 5 minutes. The doctor did remark that I had blocked oil glands and I should continue the hot compresses. I asked her about restatsis and showed her an article that I got from the web. She was quite angry that I was doing this research and said that there was no way that I was a candidate for restatsis. Reluctantly, she gave me a sample of Fluormetholone a steroid drop to put in my eyes 4 times per day. It has offered some relief, but she made it clear that I would get no more of this product after I finish the sample. She also gave me an antibiotic oinment (sample) to put on my eye at night. I am marginally better than I was a week ago, but not sufficiently better to resume my otherwise active life.

I have another appointment to see this doctor on June 6. I believe that there must be something (maybe more steroids) that I can put into my eye to get more relief. Also, I am planning a 3 week vacation in Peru and honestly don't know if I am up for a trip with my eye in such bad shape.

I would appreciate any advice that people have that will enable me to work with this doctor. What prescription treatments are available, because I have literally bought ever over-the-counter eye drop and nothing seems to help! Also, if someone has a doctor recommendation in the Bay Area of northern CA., I am open to going outside my health insurance if necessary. I am pretty desperate for help.

I am certainly glad to see this forum.

cindyv

[jsb]

I'd say it's time for a different doctor with a higher emotional IQ.

[Cindy]

Hi cindyv, I'm glad you found us and welcome.

I'm sorry your doctor disapproves that you use the internet for health care information. I believe that most people are capable of separating the wheat from the chaffe when researching health information and can, with a willing doctor, use it to enhance patient/doctor communication. If you choose to continue to use the internet to be better informed and actively involved in your health care and the decision-making process, then you might consider finding a physician who welcomes an informed, empowered (not to be confused with 'know-it-all') patient.

I have found that some doctors are more accepting of my internet use when I let them know which sites I routinely use. It's also really helpful when a doctor recommends sites they are comfortable having their patients refer to. Many of the information sites I use are peer-reviewed and quite acceptable to my doctors. PubMed, eMedicine, Medline etc. Understandably, some doctors are much more skeptical of information found on sites like this one that are 'patient' run. And that's (sort of) fine. My dad still insists that computers are a passing fad. I don't push it with them. I have one doctor (not an eye doc) who thinks well-researched, responsible patient run websites and noprofits are wonderful tools for helping other patients communicate their problems more clearly. We take a lot of time keeping up with current research, making it available with proper attribution to our readers and providing a moderated bulletin board so there can be collaborative information-sharing among our members.

For a lot of reasons, some doctors hate that their patients use the internet while others are more apt to go with the flow. A reasonable amount of internet research from a respectable source presented by an involved, courteous patient should not, in this day and age, elicit an angry, disdainful response from a doctor.

[Rebecca Petris]

Some doctors will initially interpret patients' research efforts as an attempt to backseat drive their own care, especially if they've had bad experiences with some patients seriously overdoing the self-diagnosis/self-treatment concept. Taking reasonable steps to demonstrate your real intent and the care you have taken to seek out reliable sources should win them over after one or two visits. Asking them for direction about where to go online for the best information is also a good idea.

What concerns me about your description of your doctor is that she sounds like she has no vision for treatment beyond drops. This is NOT to say that to be useful an eye doctor must be aware of and interested in every possible treatment ever used for dry eye. But to be useful to you, the doctor needs to be, as a minimum, interested in dry eye, current with medical research in dry eye, and willing to have a dialogue about options. If indeed your problem is excusively severe dry eye, and drops aren't keeping your eye adequately comfortable and healthy, you need someone who meets those criteria.

Consider both opthalmologists (corneal specialists preferably) and optometrists in your doctor search. You can call their office to discuss your needs and try to determine whether they're a good match. Of course, a referral is always best. Your GP might be able to suggest someone, or you might ask around amongst your friends (particularly elderly ones as they may be more likely to visit eye doctors more often).