Need Advice please I'm so confused :(

[evielady11]

Hello everyone. I have a follow up with Dr. Latkany today at 3:00 and I just don't know what to tell him, what to ask him, and how to approach him. I'm so lost and confused. I can't even begin to tell you what all of this has done to me emotionally. I'm new so I dont know my way around here too much. quick overview. I wore contacts for 27 years (soft) and all of a sudden out of no where my right eye started tearing, first opth. I saw said I had corneal abrassions due to poor fitting contacts., took me off contacts gave me tobradex for a week, went back and said eyes looked great and gave me daily contacts to try. felt great for two days and then eyes started to tear again, and it all progressed. I have seen 8 Drs in total and finally I got to Dr. Latkany. a past doc did a schirmers test and said I scored of 3 in both eyes, but they left the little papers in for less then five minutes, not sure how reliable this was. I have been dealing with what I think is "dry eye" syndrom for three months now. I've had liiflow done on Oct. 4 (got into debt)and it was not successful) now I know ..because Dr. latkany days I do NOT have MD and that my oils are fine and appear normal for my age (I'm 40). I tried restasis for one day back in sept. but my eyes burned all day and I got scared so I stopped. I'm very scared of using Restasis ...Haven't tried anything else until I saw Dr Latkany for the first time three weeks ago...I've already seen him twice... he said there are still options for me to try but he wants to get down to the root cause of my symptoms, yet I'm not showing "typical" dry eye. OMG It sure feels lke it though!!Heres what happend during first and second appt with him.

The first thing he said was I had inflammation and slight Corneal neovascularization , do you know what this is? He said it was caused by contacts, but doesn't know when this happend as I was NOT his patient before. He said it was called "contact lens overwear, even though I had stopped contacts since Sept. Also last year I changed contact lense brand and wore them for 9 months ) I wonder if this is the culprit ...what worries me is that two days before I saw him, I was going SO Crazy with the irritation and burning and dryness, that I popped in a daily contact even for just 3 hours so the air and wind from walking, shuffling papers at work etc.. wouldn't burn me anymore ... what I don't know is if this made my problems worse because I was in so much pain by the time I saw him.I felt like I had cuts in my eyes He prescribed lotemax drops and when i asked if I'd be able to wear contacts ever again, he said "he didn't know yet"... so the lotemax helped maybe for two days and then symptoms returned ... during the week I was on it though, although my eyes were dry, I didn't really feel the need to be putting drops in every 15 minutes. So I just saw him for a follow up two weeks ago and he was highly suprised at how GOOD my eyes looked... he said they were 99% better, and he said he doesn't think I am suffering from dry eye syndrome..he thinks something is off with my corneas and THAT IS WHAT'S CAUSING THE DRY eye symptoms and discomfort, he said what it was and I don't remember, he seems really good and said "we have to get to the root cuase of why you are having the dry eye symptoms yet, the surface of your eyes don't look that bad.I couldn't believe it!!! So he feels the cornea being off, is what's causing my symptoms not the other way around. So he said "ok, so you put the contact in last week to stop the burning and irritation"..."so he said he is treating me with a "bandage contact" which is actually my own daily contacts that I have. He said he wants to cover the cornea to see if this helps it heal... and to wear the contact for no more than 8 hours and put refresh plus drops every two hours while wearing them. OMG, i was shocked and nervous, i even said "doc..are you sure"?? he said if i couldn't tolerate them to take them out. and wants me to wear them to todays appt. to see the fit. He has not seen me in them yet. I even opened up to him and told him how worried and how debilitating this has been and he said based on what he is seeing...I don't have typical dry eye findings that would be causing me so much pain, dryness and irritation/burning, and he wants me to do this and see me in two weeks . At first they felt wierd and very slightly uncomfortable, the rewetting drops made it more comfortable and I felt NORMAL! But didn't last long, by the third day I just couldn't tolerate them anymore. because of the DRYNESS. So i emailed him and he emailed me back and said "just because your eyes irritate you does not mean they are dry" and to try them every other day and on the "off contact" day to do lotemax. This got me through the holiday, but then the lotemax started to irritated me too. So I haven't worn my contacts since Friday, and I also stopped the Lotemax on Monday. I really want to trust him guys, he seems so good and kind, and I really want this to work as I'm tired of so many doctors and wrong diagnosis...I want to trust him. Only thing is..I'm seeing him in the NJ office and mabye he's a little bit rushed I don't know. and he's only there like twice a month I think. He mentioned punctal plugs which I haven't tried yet. he may do this today, but maybe he's resistant because he's seeing something that is not what I think this. I don't want to come across like a whiny person, as I've been dealing with this for three months only but it has been so draining, so depressing, and my quality of life is just not good anymore. i'm a mom and have two children and it's even starting to effect my marraige. I just really need some support. I keep telling myself "this too shall pass" I can't live like this, I've even been told NOT to focus on this anymore, that I'm giving it too much power, too much energy and that's why I'm not healing. But how hard is it to "ignore" this when my eyes are so important in everything I do? thanks for any comments or advice everyone.

[rppnj]

　Hi Evie,

I think that the most frustrating thing with Dry Eye is its inconsistancy. You never know when / why you are having a 'good' day as opposed to a 'bad' day. This month will be 5 years for me with Blepharitis / Dry Eye. I still don't know the root cause of my sensitivity is, although any irritant at all (even my wife's hair spray will trigger a reaction). I've been to 4 Doctors and even underwent the Lipiflow procedure at the Wills Eye Institute, Lipiflow helped, however, the results did not last. Unless the price drops to $200.00 or less, I would never have it again (I paid $1700.00!). Hang in there, Evie and give Dr. Latkany a chance to figure this out for you. I understand he's the best there is. BTW, I didn't know he has an office in NJ. I live on the Jersey Shore and I may consider making an appointment to see him, also. Best of luck and have a wonderful holiday season.

Kindest regards,
rppnj

[No tears in ATL]

Evie, looking at the time here on the East Coast, sorry I could not respond to you before your appointment. I hope you at least got closer to some answers, though. Keep us updated as to what he said.

To echo rppnj, I've also not been able to figure out what my dry eye triggers are either. This is going on 6 years for me, and I've tried everything under the sun except scleral lenses (which scare me a bit, actually--but I'd be willing to shell out the money if my eyes weren't already abnormally sensitive to dang near everything). It may be a lot of trial and error, but each time I think we get closer, at minimum, on ways to manage our symptoms better.

Like you, I had a diagnosis once of "you don't have dry eye" and "it's just allergies." Well, after much suffering, nearly three years into this ordeal, went to a doc who looked at my eyes and said, "Oh my gosh...you ARE dry." And it wasn't even an opthamologist. My point is, if in your heart you feel as though something isn't right, that this level of suffering isn't normal, you may need a second opinion.

Dr. L seems like he cares and is at least willing to look at other possible issues from what you describe here. I think a lot of doctors fall into diagnosing and treating based on some template (step 1 drops, step 2 plugs, etc. etc.). The problem with the template is that dry eye is very complex and sometimes you have to skip one option or try another. Ex: Most severe cases on this board can tolerate being quadra-plugged--I ended up with really bad backup inflammation. The bad quality tears were just sitting there on my eyes all day.

How do your eyes feel without anything in them at all? Without contacts, drops, lotemax? Maybe talk with doc about stopping everything and looking into the best feeling drop you can find. Some of the drops, even the preservative free, can have very irritating ingredients. Refresh and theratears, which seem work for everyone else, were very bad for me. The BAK in lotemax isn't helping either.

[NotADryEye]

At your next appointment or when you e-mail him, ask the doctor what he thinks it is if dryness is no causing the discomfort. he is correct. There are a lot of conditions that can feel like dryness but aren't. Saponification, conjunctivalchalasis, abrasions, come to mind. Ask for the diagnosis, and do not be surprised if it is more than one thing. Co-morbidities are common.

If it were me, I would stop the contact lenses. I don't think our eyes were made for prolonged contact lens wear that isn't for therapeutic reasons. But that's just me and I never wore contacts.

Some people, like me and NTinATL just can't tolerate anything. We are sensitive or allergic to these things in our eyes. We're still human, however, and that just means the doctors have to be more creative in how they treat us. It's not impossible, but they have to be really good at it.

[Logandly]

Hi evie,

Do you know tobradex and lotemax are steroids? Never ever use steroids for your eyes esp if you have corneal scratches!!!!

I would ask your doctor why he prescribed you a steroid instead of a gel that heals your eyes!!! I had the same dryness and stinging problem you had after using steroid drops but I started using the solcoseryl eye gel which healed my eyes in one week.

Also if you have corneal neovascularisation, you should never wear contacts again. If those blood vessels bleed into your retina it can cause permanent blindness. When your eyes get enough moisture and oxygen, they will become empty vessels (won't bleed into your retina)

I would ask your doctor not to give you any more steroids, and see if he can prescribe you the solcoseryl gel which has superior healing qualities that has been well documented in numerous medical research.

Logan x

[Gerri55455]

Evie, Logan .... I would really like to hear more about Solcoseryl. I have persistent burning and stinging from steroids. Autologous serum tears are helping a little bit but I am wondering whether I shouldn't try Solcoseryl too. I've been hurting for a year and I'm at my wits end. Thanks so much. ~Gerri