Looking for some hope

[HighAltitude_13]

Hi everyone,

I'm new to the forum and grateful to have found such a supportive community!

I had refractive surgery (Femto SBK with corneal cross-linking) in June 2019, so I'm about 16.5 months post-op. I had severe dryness for ~3 months after the surgery with significant photophobia and difficulty keeping my eyes open. The dryness improved by 6 months and then a bit more by 12 months, but nowhere near back to normal. Naturally I became extremely anxious at my 12-month check-up because, as I understood it, the dryness should be resolved by then, but it wasn't (if anything the sensation in my eyes was getting worse as time went on). I was prepared for dryness post-op, but not like this...

I've been on a downward spiral mentally since then and a month ago I went on a steroid drop (Fluorometholone) and Xiidra. They have helped marginally (my eyes aren't as stuck to my eyes in the morning) but I still feel discomfort all day long including constant foreign body sensation in my right eye and hearing myself blink, constant air bubbles in my eyes (not sure if that's normal?). Daily activities are difficult and sometimes feel impossible, as you all are familiar with.

I am also doing some other treatments such as taking supplements (Omega-3, Vitamin B12, Vitamin D3, Collagen, and multi-vitamin daily), warm compresses (Bruder mask) 2x daily, green tea+lemon 2x daily, as well as artificial drops throughout the day (currently using I-Drop Pur Gel). Trying to meditate as well but that one's proving a bit difficult

I guess I'm looking for a bit of guidance and hope and was wondering if anyone had any input with regards to the following:

• How long is it recommended to try a new treatment before giving up and moving on to another, or adding additional treatments? I believe I read somewhere in the TFOS DEWS II that 3 months was usually a good time frame.
• Is it best to start on AST drops as soon as possible to attempt to better heal the nerves? The Xiidra doesn't bother me much but I'm not convinced it's helping much and I'm pretty sure my opthamologist only prescribed it to me because he gets kick-backs from Shire.
• Have you heard of people who had their dryness resolve (ie. go back to pre-op level) after a year post-op? As I understand it, corneal nerves are still regenerating up to five years post-op, but my dryness has been relatively stable for months and I'm losing hope at this point. It's hard to remain hopeful and patient when I'm in agony every day.

Thanks in advance for any tips or hope that you may be able to provide I really appreciate this community and it helps to feel much less alone in this.

[GabeR]

Firstly I recommending joining all the facebook groups they are much more active than this forum.

You can keep regenerating the nerves, I highly recommend AST.
Stop using FML as it can cause cataracts and glaucoma, Lotemax is a much safer steroid drop to use.
Upper and lower punctal plugs helped my dryness a lot.

[anteloper]

I'm not a doctor and I don't know a ton about post-op dry eye but I would be cautious about using steroids long-term. AFAIK they are meant to decrease inflammation short-term only and long-term use can have side effects. I don't know about FML but I'm pretty sure Lotemax has benzalkonium chloride in it (as a preservative) which definitely can cause long-term damage to your eyes.

Where are you located? How many doctors have you seen, and do you feel like they've been helpful?

Do you have signs/symptoms of MGD, blepharitis/inflammation, or ocular rosacea?

In other words, do you think a poor or unstable tear film is part of the problem, or do you think your symptoms are mostly due to disruption to the cornea from the surgery?