Feeling very discouraged and needing diagnosis . . .

[Hopeful2]

Hi there,

I am really not sure how to proceed. I saw a doctor that I really like, compassionate, knowledgable. . . and very rushed. He looked briefly at my eyes through the slit lamp, confirmed that there were dry spots. His resident did some kind of flourescine pressure test and a TBUT, which he said was 8 sec. I didn't have the sense that he really knew what he was doing though. My doctor said I continue to have MGD, but other than warm compresses and rinses, he did not have any other treatments specifically for the MGD. I did get the serum drops which he had prescribed for me. I am hopeful that they will improve my occular surface.

I am feeling so discouraged. It has been three months since lasik and I am afraid that my eyes are actually deteriorating. I hate not knowing what is going on. I have been seen by four different opthalmologists now. Three of them have said I have some degree of MGD. None of them have done a Schrimer's test. Only one has tried to express oil from my MGs.

In addition, I have stabbing pain in my eye. More frequently in late afternoon and evening. Sometimes it feel intolerable. I try cool washcloths but that seems to bring only temporary relief. The opthalmologist said I could have post neuralgic pain and that it is very real and not in my head.

I have some vision issues that cannot be resolved with glasses (+ve in one eye and -ve in the other, reduced contrast sensitivity). The opthalmologist does not want me to try a contact lens yet.

I want my old life back!! This is so unfair to my family. . .and me. I know it is not possible, so how do I get to that place of living a new and diminished life. How do you grow to accept your long term dry eye complications?? Does anyone use pain medication? Any ideas on steps to take to get to a better place?

I am so sorry to be posting this downer of a post.

Thank you for listening!

Bella_girl

[neve]

Hi there,

I am really not sure how to proceed. I saw a doctor that I really like, compassionate, knowledgable. . . and very rushed. He looked briefly at my eyes through the slit lamp, confirmed that there were dry spots. His resident did some kind of flourescine pressure test and a TBUT, which he said was 8 sec. I didn't have the sense that he really knew what he was doing though. My doctor said I continue to have MGD, but other than warm compresses and rinses, he did not have any other treatments specifically for the MGD. I did get the serum drops which he had prescribed for me. I am hopeful that they will improve my occular surface.

I am feeling so discouraged. It has been three months since lasik and I am afraid that my eyes are actually deteriorating. I hate not knowing what is going on. I have been seen by four different opthalmologists now. Three of them have said I have some degree of MGD. None of them have done a Schrimer's test. Only one has tried to express oil from my MGs.

In addition, I have stabbing pain in my eye. More frequently in late afternoon and evening. Sometimes it feel intolerable. I try cool washcloths but that seems to bring only temporary relief. The opthalmologist said I could have post neuralgic pain and that it is very real and not in my head.

I have some vision issues that cannot be resolved with glasses (+ve in one eye and -ve in the other, reduced contrast sensitivity). The opthalmologist does not want me to try a contact lens yet.

I want my old life back!! This is so unfair to my family. . .and me. I know it is not possible, so how do I get to that place of living a new and diminished life. How do you grow to accept your long term dry eye complications?? Does anyone use pain medication? Any ideas on steps to take to get to a better place?

I am so sorry to be posting this downer of a post.

Thank you for listening!

Bella_girl

Hi Bella - I do not have anything eart-shattering to say but wanted to relate a bit of my own experiences w/ two different opths. The first one diagnosed me incorrectly, yet he did a Schirmers (useless in my opinion), never mentioned bleph or MGD or allergic conjunctivitis. No diagnosis but was anxious as all get-out to put in plugs that day. Fast forward to 10 days later...wanted a second opinion before I did plugs. Saw 2nd opth -she does not do Schirmers test because she says all she has to do is examine my eyes and does not need a piece of paper to tell her that they are severely dry...says she feels that Schirmers test is not reliable anyway. I got my diagnosis that day...I have EBMD (map-dot), MGD,severe bleph and allergic conjunctivitis (not to mention a small cataract) and told me that these problems have been going on for a very long time, judging from the condition of my eyes. Here's the kicker...first doc-corneal specialist/surgeon. Second doc-retinal specialist. I am now on Muro drops 4X daily and Muro oint @ nite as well as Azasite and SteriLid cleanser and compresses. Corneal guy did not put me on Muro;he said use lube tears during the day, and in the eye that's worse, Muro oint @ night. He was wrong because nothing, and I mean nothing works on me like Muro and that is because of my specific problem.

The opth that actually diagnosed me was very rushed, talked way too fast, and def not a "hold your hand warm and fuzzy" type. Yet, I believe that she is on the right track with me. And how very glad I am to have gone for the second opinion, gotten a diagnosis and so grateful that there are no plugs in my eyes because raging bleph/MGD coupled with plugs, to the best of my understanding makes for bacterial eyeball soup. Yum!

Don't know about your stabbing pain...are you having erosions? And were you given any thing for the pain?

How do you reclaim your life? Read the posts on this forum written by people that have unbelievable courage and determination that allowed them to keep going and enabled them to redefine their definition of "life."

I've read them...and after I stopped crying, I knew that I also needed to rethink, re-prioritize and re-define.

Good Luck Bella!

Neve...........................By the way, I am scared, too.

[doc k]

His resident did some kind of flourescine pressure test and a TBUT, which he said was 8 sec.

That was your eye pressure measurement. A tear break up time of 8 secs is about normal, so good!

My doctor said I continue to have MGD, but other than warm compresses and rinses, he did not have any other treatments specifically for the MGD.

MGD seems to stay nearly forever. And there's no single effective treatment, and we don't understand it. It's a bear!

I did get the serum drops which he had prescribed for me. I am hopeful that they will improve my occular surface.

I'm suprised that autologous serum has been brought out this soon in your case. I hear of it as a "last resort" type of intervention.

It has been three months since lasik and I am afraid that my eyes are actually deteriorating.

I think there's hope. LASIK does sever peripheral nerves, but they do regenerate (very slowly). Give it some time.

None of them have done a Schrimer's test.

Schirmer's has a reputation as being useless.

Only one has tried to express oil from my MGs.

I'm doing this more and more therapeutically (vs. diagnostically). Did it help?

In addition, I have stabbing pain in my eye. More frequently in late afternoon and evening. Sometimes it feel intolerable. I try cool washcloths but that seems to bring only temporary relief. The opthalmologist said I could have post neuralgic pain and that it is very real and not in my head.

Possibly neuralgia, but possibly small epithelial erosions. RCE therapy may be useful for you.

I have some vision issues that cannot be resolved with glasses (+ve in one eye and -ve in the other, reduced contrast sensitivity). The opthalmologist does not want me to try a contact lens yet.

Bummer, but still early in the post-op period.

How do you grow to accept your long term dry eye complications??

I don't think that's inevitable...don't give up hope.

[doc k]

One additional comment. I am shocked and amazed at the level of understanding and knowledge that you regular posters display.

[Rebecca Petris]

One additional comment. I am shocked and amazed at the level of understanding and knowledge that you regular posters display.

Welcome doc k. We're a compulsively self-educated lot here Pain is highly motivating.

I am feeling so discouraged. It has been three months since lasik and I am afraid that my eyes are actually deteriorating. I hate not knowing what is going on.

It's hard not to get discouraged at that stage. In my experience, with unusual post LASIK dry eye healing courses (which are pretty much the only kind of LASIK cases that turn up on this site), there can be any amount of up and down in the first year (and for some of us, second). It was like that for my vision as well. When your life is so much affected, every change of pattern is feared to be a trend but the fact is they are often only microtrends. It's kind of like diurnal fluctuations only these go for days or weeks till you lose all sense of what your baseline was or is or whether you're better or worse than you were months ago. I don't have any better advice on this than to grit our teeth, repeat the mantra "THIS WILL GET BETTER... IT TAKES TIME" and surround ourselves with good support, from family to therapists to church to dry eye buddies from DEZ to whatever it takes.

I have some vision issues that cannot be resolved with glasses (+ve in one eye and -ve in the other, reduced contrast sensitivity). The opthalmologist does not want me to try a contact lens yet.

It probably really is too early yet to be safe. The wait is maddening but it just has to be gotten through. Personally I tried my first RGPs just 3 months postop (probably a mistake). It was to be another three years before I would get into any lenses that I could actually wear. Pushing through the bad vision and eye pain is really rough. I am thankful that there are so many better technologies and more experienced practitioners around now than there were back then. I just passed my 10th laser-versary.

I want my old life back!! This is so unfair to my family. . .and me. I know it is not possible, so how do I get to that place of living a new and diminished life. How do you grow to accept your long term dry eye complications?? Does anyone use pain medication? Any ideas on steps to take to get to a better place?

I am so sorry to be posting this downer of a post.

Don't be sorry. This is a safe place to do that when you need to. It's important to get it out there. I think it's important to give yourself space to grieve. It's hard when the timeline and the ultimate outcome are unknowns because you don't know whether you're leaving something behind, or should, or embracing something new yet, for the long term - it's just much too early. But it's not too early to grieve what you are missing right now. I think letting that be OK, and getting good support in that place rather than just trying to climb out of that place, is part of the process in an early post lasik crisis.

[Hopeful2]

Oh Rebecca . . . what can I say! Your message is uplifting.

I know it is early, but when you feel like there are sharp shards in your eyes the waiting seems unbearable. I am due to start work in a couple of weeks and I have no idea if I'll be able to manage. I need to work for I Have always found work to be therapeutic in the past. I don't know how my eyes will manage with respect to dryness and vision. I work in a flourescent lighting environment which really seems to make my eyes more sore and the vision less clear. I am looking into a yellow lens which is supposed to increase contrast sensitivity. I wonder if there is anyone who has had experience with this type of lens in glasses?

Has anyone ordered Megs (micro environment glasses) recently? I ordered a pair several weeks ago and have not heard back. I think the Zienas might be too big for me to wear comfortably all day. I have asked a few opticians if they know of anyone who makes custom moisture chambers. Everyone tells me that they have never heard of such a thing in all their years of working as an optician. I guess I am that much of a rarity.

Thank you to all who have responded to my post! Your words of encouragement are very much appreciated.

[mgshutterbug]

I hope that you will feel free to come here and share however you're feeling. Everyone has been very kind and accepting of anything I've written, I've gotten so much support. Knowing that there are others who are dealing with the same issues you are, and somehow making it - that helps me alot too. For me, feeling all alone with this is one of the hardest things. None of my friends, co-workers have any idea...

Anyhow, in the Dry Eye Shop, Rebecca has a number of different frame types. In the recent past I have bought Panoptx wrap around glasses with foam inserts, like Sirocco, and found them to be a God-send. I am sitting here right now in my Sirocco bifocals. w/o them, I would be listening to music or something on NPR. w/o frames with inserts, I am unable to keep my eyes open longer than a minute or so without severe pain, instant more severe dryness, and greatly reduced vision from dryness. I have also recently purchased Ziennas. It's not that the frame is too big for me. I think I"ve got it figured out. Because the inserts are soft silicone, they cannot support the glasses on the cheeks, therefore they slide down the nose. But when I measured the frame size vs the Panoptx Sirocco, if anything, the Zienna frame is slightly smaller temple to temple. The lenses are huge, that's for sure. But that's not the reason they slide. They need some kind of nosepads. I'm currently looking for soemthing to fill the bill. They are not as effective as foam insert glasses in the wind, do not seal as well. But I've been pleased with them indoors, and when taking walks on non-windy days.

And take heart - you're around friends who are warm and supportive. It is ok to say how you feel, it's more than ok. We're all here in support of each other. Take care.