"Continue as is..." Frustration with this morning's appt. with DES specialist.

[portrgirl]

I guess this is more sharing my frustration and disappointment than asking any specific questions...

I had my week follow-up to my appointment last Monday when I got collagen plugs in both lower ducts. I had no noticeable improvements, so I was handed over to the dry eye specialist. He checked my eyes and ended up telling me that it's environmentally induced dry eye most likely due to my work environment of sitting at a computer all day every day. He said that I definitely should get more permanent plugs and possibly cauterized ducts since I have a chronic problem, but that the collagen plugs would still be around at least in fragments for another few weeks or even a couple of months, so wait until then (and after allergy season) to put them in. This is all opposite what the other doc said: that the collagen would last for a few DAYS and that if I had no improvements there wouldn't be a point to getting more permanent plugs. At least this specialist said that I shouldn't even consider Lasik now or possibly never and definitely not contacts. The other doc was all about Lasik (since it's apparently such an awful thing to have to wear glasses). And the new one is all about no preservatives at all since I need to use drops so frequently. I also like that he wants to fix the cause rather than treat the symptoms with antibiotics, drops and steroids.

But I'm bummed because I was told to keep doing what I'm doing: Restasis, lubricating drops (PF vials, Dwelle/NutraTear, Genteal Gel), use a humidifier at work, take breaks at work to close my eyes and blink fully, continue with the 2000 mg fish oil capsules daily, and only take my allergy medicine when absolutely needed. He said that anything else that I find helpful (warm or cold compress for instance) to do it because it won't hurt, but that he didn't think any of those would help significantly as my problem is not blepharitis related (I haven't found any of the otc treatments to be particularly affective yet either although I wonder if I haven't given them long enough to show improvement). He said to consider moisture chamber goggles (specifically Panoptx) for work but that he couldn't guarantee that would help significantly either, plus they look odd, which I agree with. I don't know that I'd feel comfortable wearing them (my boss has made fun of my glasses before ), plus I'd need my Rx put in them which would up the cost significantly. I suppose it's good to know that my DES isn't physiological meaning blepharitist, etc., but I have to think it's some what physiological since my other coworkers are FINE...

Still, I know that others have a much worse problem than me, so I feel like I'm being too whiny or expecting too much from my eyes. I'm actually starting to wonder if I just THINK the problem is worse than it actually is, especially since I was just told to continue as is. So yes, no real questions here... advice, comments, etc. are always welcome though. Thank you to those of you who actually read all of this!

[indrep]

The confusion about plugs might be related to the type each doctor uses. If in fact the plugs were collagen, they are only around for about 3-5 days. If they were the "synthetic" Extended Duration plugs then they could indeed be around for up to 115 or so days. Many doctors within a practice use different ypes and that might be where the confusuion comes in, but it should be in your chart. It is possible that if you have very low aqueous production and in an environment that causes those tears to evaporate quickly occlusion of only two puncta may not have been enough. Were there ever times away from work when eyes felt more moist?

[portrgirl]

Were there ever times away from work when eyes felt more moist?

Yes, actually. Wednesday night I used a warm compress for 10 minutes right before I fell asleep. For the first time in a while I slept without waking up because of my eyes hurting and woke up in the morning with my eyes feeling very "smooth" and feeling fine after blinking a few times. I had also put in Restasis as usual and used Genteal Gel for the third night in a row after trying Dwelle for a while. I don't remember any significant differences during Thursday though and I tried the warm compress again Thursday night but didn't see the same effect (I had also gone to a late night baseball game though, with wind and some beers -- my eyes always seem worse the later I stay up). Other than that I really hadn't noticed much difference at all.

Regarding the type of plugs used, the new doc had my chart and spoke with my old one, so I should hope he'd know what kind were used.

[rubyslippers]

I had the dissolvable plugs that last around 90 days in the lowers only. After about 2 months of them working well, I got one upper 90 day plug. Several days later we put permanents in the lowers and when I came back a week later, I liked them so much I asked about a permanent in the upper. He said we could do it right away as you don't have to wait for any dissolving if you don't want to. So about 8 days after getting a 90 dissolvable I had a permanent put right in on top of it. No problem at all.

[kitty]

One of the worst days of my life was the day I was told "keep doing what you are doing, there is nothing more I can offer you". This disorder is something that you learn to manage. As far as I know, there is no cure. One day you will wake up and decide to stop hunting for a cure that is not out there, and vow not to let it keep you from living. Meanwhile, you never give up hope that someone will find a treatment that at least makes you comfortable more days than not.

[LasikLady]

You are beginning to experience what I think we all have been through, most doctors (all I've been to) don't seem to know a whole heck of a lot about this condition and even less about what we can do to manage our symptoms. The things that have helped me the most are things they said probably wouldn't do much.
I empathize too for what you must have been feeling having the doctors give you conflicting information. It's like don't they read the charts!? I had one doctor offer me flow controller plugs because he knew I was upset about my plugs always falling out. I'm like "What the heck?!" I have never lost a plug yet!! He had my chart, I wanted to try a flow controller plug because I was over tearing and anyway, how would putting in a flow controller help if I was constantly losing plugs?!! I was blown away. I am not doctor smashing though because I know there are some great ones out there, like the ones that contribute to this bulletin board. I guess what I'm saying is don't wait for a doctor to help you improve your comfort, do as you are doing and be as pro-active as you can about your improvement. You have to nail your own routine down and do your best to stick to it. Do your own research.
I remember in an earlier post you had mentioned relying on the advise of an experienced eye doctor to help you. At the time I thought, "Okay and when that doesn't work we will be here to offer you suggestions that will."
Oops that sounds like doctor bashing again and I know that is a "no no". I guess I am just jaded because not one doctor has helped me the way the real experts on this board have.

And one more thing...NEVER, EVER even consider Lasik!!!! I'm glad you know better!! I ended up with this condition after having perfectly healthy eyes (no dry eye issues) pre-surgery!!!

Please know things can/will get better and we are all rooting for you!!

[portrgirl]

Oh thank you all for all of the responses and support!

He said we could do it right away as you don't have to wait for any dissolving if you don't want to. So about 8 days after getting a 90 dissolvable I had a permanent put right in on top of it. No problem at all.

That doesn't surprised me since I had two doctors both with my chart telling me different things. I imagine that the differences can be even greater with different clinics. For now, I'll just go with what he said: come back in 2-3 months. I'm getting sick of spending $20 each time I go to get nothing really out of each appt.

This disorder is something that you learn to manage. As far as I know, there is no cure. One day you will wake up and decide to stop hunting for a cure that is not out there, and vow not to let it keep you from living.

I guess what I'm saying is don't wait for a doctor to help you improve your comfort, do as you are doing and be as pro-active as you can about your improvement. You have to nail your own routine down and do your best to stick to it. Do your own research.

Good points. I'll keep up with the Restasis and go back for plugs in 2-3 months, but I need to shift my attitude to looking at what I can do to help myself and put more effort into it... I've already started to keep a daily record of how my eyes feel and what I'm doing to help them.

I remember in an earlier post you had mentioned relying on the advise of an experienced eye doctor to help you. At the time I thought, "Okay and when that doesn't work we will be here to offer you suggestions that will."

Yup, I did say that because I was way out of control with questioning everything they told me way too much. I'm still confused how the new doc couldn't know what kind of plugs I had in! The other doctor said that they were temporary collagen ones that would last at most 7 days. So either he didn't know what he was putting in or the new doctor can't read right. Either makes me a bit nervous. It does seem like even the specialist didn't really have much to offer me though.

And one more thing...NEVER, EVER even consider Lasik!!!! I'm glad you know better!! I ended up with this condition after having perfectly healthy eyes (no dry eye issues) pre-surgery!!!

I also won't ever try Lasik. It makes me too nervous now... I didn't think anything of doing that but now I think of it as screwing with my SIGHT. My god, I'll take needing to wear glasses (and a fairly low rx at that) to something potentially worse from unnecessary surgery. Maybe I should be thankful I have DES now; it may have prevented me from something much worse from Lasik. I'm sorry to hear that you got dry eyes from it...

[clairvoyant]

You know what gets me. When a doctor looks at your tear film and thinks it is fine but if he were to stain would see there is still dryness...

I saw this great piece on the Today show with Dr. Nancy Sniderman and one of her cancer patients.

The doctors were reccomending all this stuff and if the girl would have gone ahead with it then there is a good chance she would not of been able to have kids.

So the girl in question did a ton of research before agreeing to those treatments and found a clinical trial that would make the treatment safer and enable her to have a healthy baby.

Well she brought it up with her prime time doctor who had suggested otherwise to start and agreed to look into it.

After confirming the research she reffered her to the doctor doing the trial and the girl came away cancer free and was able to start the family she had wanted to.

Moral of the story I guess is that it is really important to form that bond with your doctor and if you have serious evidence and insight you gotta make sure they understand.

*takes notes*

[kitty]

Moral of the story I guess is that it is really important to form that bond with your doctor and if you have serious evidence and insight you gotta make sure they understand.

*takes notes*

I will second that. No doctor knows everything. I am a nurse, the worlds worst kind of patient because we know enough to be dangerous. I had a medical problem and thought I had it identified through lots of research. I told my specialist doc my thoughts and insisted on a test to rule it out. Sure enough, I was right. She was surprised. We both learned something that day! Being assertive and working with your doctor will only improve your chances of a successful outcome. And if your doctor won't listen to you, it is time to find one who will.