Dry eye and RK

[lifesablur]

Hello fellow sufferers!

I am new to the forum, and relatively new to severe dry eye. I am a 49 year old professional in otherwise good health. I've had moderate dry eye for years, but nothing debilitating, just annoying. Had RK in ' 93 with mostly good results until this dry eye got so bad in January.

Now I'm suffering from greatly reduced vision both near and far. Days on the computer at work are nearly unbearable, and my driving is limited. I've completely stopped driving in low light, and rely on my wife for most of the driving.

My regular eye doctor / optometrist really didn't take my dry eye seriously and did little to direct my care. He did start me on Restasis in November, to which I was sensitive. I stuck with it until April, but I think it actually contributed to my worsening condition. Now I've found a good dry eye and corneal specialist in Greenville SC and hopefully am on the right track. Went through a round of steroids to clear up some ketatoconjuntivitis and started Xiidra two weeks ago. Getting fitted for scleral lenses this Friday. Dry eye soecialist attributes fluctuating vision to the inflammation and swelling affecting my RK-weakened cornea. Until now, I've not experienced the fluctuating vision that so many RK patients have.

I have some questions for anyone with dry eye and RK, or really anyone with good advice.

- Xiidra reviews from anyone who failed with Restasis. Restasis seemed to increase my inflammation and I'm paranoid the Xiidra will as well.

- Anyond false suffering from bad and /or fluctuations g vision from dry eye, specifically related to RK history?

- Dry eye and RK folks having success with scleral lenses?

- Need some bonding over the shared experience of anxiety and depression. I was very active before this set in and now I'm a wreck! Exhausted after work days, I op on the couch with a hot pack or cold pack on my throbbing eyes. Worried about work, active retirement someday, feeding my kids and putting them through college. I know this all sounds dramatic but if this gets any worse I won't be driving or using a computer, which means no income.

Ok, THAT was a long first post. Look forward to hearing from some of y'all out there.

Thanks,
Lifesablur

[Hokucat]

Hi there, Lifesablur. Sorry to hear about your situation, but sounds like you are on the right track.

I did not get severe dry eyes from RK or LASIK, mines was likely due to autoimmune disease, and probably compromised further by excessive computer use, a long work commute, and long term contact lens wear. I don't know if you wear contacts, but your computer use may be exasperating your situation because of reduced blinking.

Your debilitating symptoms, situation, and concerns are so similar to mines and others in this forum. It got to be such a struggle to use the computer, drive, read, look across at people while working, and just basic daily functioning, that I had to quit my job. For several years, I was home bound...all I could do was sit around with my eyes closed because it hurt to keep them open. My husband was operating like a single parent, I could no longer help out or go anywhere with him and the kids. It was a very depressing time for me. I didn't think I could bear to be like this for the rest of my life, and like you, worried about saving for the kids' college and retirement.

Somehow I mustered up the drive needed to be my own advocate, and kept looking for ways to get better. Ultimately I did get better (see link below on key factors that helped me), and scleral lenses are one of the things that helps a great deal with the dryness.

http://www.dryeyezone.com/talk/forum...ccumulate-info

I wear my sclerals 12+ hours a day, and it really helps with driving, using the computer, reading, watching TV, going to movies, being outside, etc. But there was a period when my eyes were so dry, I could not bear to wear them for several years. So depending on the state of your eyes, you may or may not be able to tolerate the lenses initially or during certain periods, but that does not mean you'll never be able to wear them.

Sclerals help people to different degrees. For some, it is the miracle they were looking for to get their life back. For others, it helps some but is just part of the solution. And some cannot tolerate sclerals at all. The experience and expertise of the practitioner fitting you with sclerals can make a big difference in your success with the lenses.

Ok, good luck to you getting fitted for sclerals this week, and resolving your condition. You may also want to try goggles like WileyX or 7Eye, and punctual plugs. There's a lot of info available in this forum, and many people who want to help. Keep us posted.

[lifesablur]

Hokucat:

Thank you for the encouragement. I must admit, though, your story frightens me! Hopefully I can head this off before I get home bound!

The local opto fitting me for the sclerals is not super-experienced, but is very meticulous. The opto working with my opthamologist is about an hour away and not very much more experienced, though. I'll roll my dice with the local guy.

Hoping theyll buy me a year or two before I need cataract surgery. Not sure at this point how much my 1+ rated cataracts are affecting my visual acuity. Opthamologist says I really won't be able to tell until I get the dry eye and possible fluctuations from the RK under control.

I'll keep you posted.

Thanks again for the reply. The shared experience certainly helps.

[Hokucat]

Sorry, didn't mean to frighten you! Just wanted you to be aware it can get that bad, but I think you are on the right track, so hopefully where you are now is the worst it gets.

I also wanted to set your expectations on sclerals. And wanted to pass along some sources for experienced scleral practitioners, for future reference:

The Scleral Lens Society website was listed in Rebecca's KeratoScoop e-mail newsletters a few months ago. It has fitters listed by state who, per the Society, have shown proficiency in evaluating and fitting patients for sclerals. I saw my doctor listed. There are several in SC:

http://www.sclerallens.org/scleral-fitters

I wear Boston PROSE sclerals, and have been very happy with my lenses and my PROSE doctor. The PROSE doctors are true specialists in sclerals, as they all go through an extensive training program, and fitting people with their sclerals is most, if not all of what they do all day. They are not also doing regular contacts, glasses, or other treatments. I trust them to be able to tell patients whether or not they are candidates for sclerals upfront at the consult, and providing a high level of success fitting sclerals. My doctor got the fit right for me on the first try. However they have limited locations, there is not one in SC:

http://www.bostonsight.org/Content/E...%20current.pdf

Did your specialist check if you also have MGD? There would be different treatments to address this if you have it, like IPL, gland expression, probing, Lipiflow, etc. MGD is THE major reason for dry eyes, so would be important to find out.

[lifesablur]

I'm trying "standard" sclerals first, as they are only around $500. From what I've read, custom PROSE lenses are still an order of magnitude higher, at least.

Im hoping they will fit well enough, and correct my RK and mild cataract issues well enough that I won't have to take the leap to custom lenses. Before spending a ton of $$, I need to narrow down and prioritize the contributors to my diminished vision: dry eye, cataracts, RK corneal aberrations, and RK fluctuations.

Yes, my opthamologist did diagnose MGD. I'm hoping supplements, the Xiidra, and my hygiene regime can manage it. Lipiflow, which my opthamologist performs, would be the next step I suppose. Haven't looked into gland probing. Sounds pretty scary!

I'm taking fish oil, bilberry, and typical "eye vitamins" with lutein, extra anti-oxidants, etc. Who knows if it's helping. Eat a pretty clean paleo / primal diet but could always do better. Planning on adding N-Acetyl Cysteine orally to the mix after reading several positive posts on this forum.

Based on your advice and results, I will replace my am coffee with green tea and lemon for a while. Reducing caffeine might help with the anxiety and depression as well.

Hopefully, I'll be the one passing on advice and success stories soon!

thanks,
lifesablur
( i keep wanting to just type my real name!)

[Hokucat]

Yes, you certainly have a lot of eye issues and it's wise to prioritize your spending, as it can cost thousands of dollars out of pocket for some treatments and specialists. However, my medical insurance covered almost the entire cost of the PROSE sclerals since it was deemed a medical necessity, and I guess I must also have good insurance!

I've been reading about the standard scleral sets local optometrists are now using to fit patients, in fact BostonSight just rolled theirs out in March. I think there are other brands as well. Do you know if yours will be BostonSight's? That would be great if it works for you, and if it only costs ~$500, I'm sure lots of people would be interested. You're the first person I've heard of who is trying the standard sclerals.

Make sure to stay on top of the MGD. If the glands stay blocked too long, you could develop scar tissue and/or your glands can atrophy and be gone forever.

The lemon/tea worked for me, but it might be something else that works for you. But it does not hurt to try it!

[lifesablur]

The opthamologist did s lipiview exam, which was basically looking through my kids with a blue light and fancy camera. It did provide some interesting images. He said my glands were blocked, but not atrophied. He said to give the Xiidra a chance to work, but I'm impatiently considering going ahead with the lipiflow. What was your experience with that? I think it was on your list of thing tried.

[Hokucat]

Lipiflow did not work for me at all. Subsequently when I had the gland expression/meibomian gland probe procedure, I found out in the few glands that my doctor could express, I had very thick Crisco-like oil, and many glands had scar tissue inside the glands. So that's likely why Lipiflow didn't work for me. Only probing can unblock the scar tissue. I think Lipiflow can be more successful for patients in the earlier stages of MGD. To me, it seemed like an expensive, high tech warm compress, but maybe I'm just bitter about losing the $1,200 I paid for Lipiflow and getting absolutely no results!