ABMD(map-dot-fingerprint), tear duct failure, BFS scleral lenses user.

[RCK]

Hi,

Rhoda in Boston, map-dot-fingerprint (severe), complete tear duct failure, multiple (good) PTK (laser) erosion repairs, BFS scleral lens user with much improvement. Happy to share info, was misdiagnosed until 5 years ago at major eye hospital, know some about good care versus poor.
Glad to find this forum! Thank you!

Rhoda

[liz56]

Help us, Rhonda!

Hi, Rhoda.

Welcome. It sounds like you have really been through a lot. I have wondered about sclerals for EBMD. Can you talk a bit about when you got them and how they help? (I fantasize about getting them and filling them up with Dwelle!)

--Liz

[RCK]

Re: sclerals, etc.

Hi Liz, hi all,

It's Rhoda, by the way, no big deal. Love the fantasy re: Dwelle but... not in my situation. Everything I use must be preservative free and single use.
It's a long story for currently tired eyes, so I may have to fill you in over time. I have had scleral lenses since early July, close monitoring, redesigns per Dr. Rosenthal. Summer, 2007 had severe episode with AMBD, vesicles, erosions, bandage lens, eventually PTK with Dr. Michael Raizman, who is quite wonderful. He also did my prior surgery about five years ago, other eye, shortly after correctly diagnosing me. Misdiagnosed despite symptoms since childhood, diagnosis came just in time. I never have any warning, first episode woke up only able to see cloudy threads in right eye, repair went well, complete tear duct failure Jan. 2007, plugs, restasis. Left eye repair also went well, cornea looked perfectly repaired. But vision remained distorted, refractive changes and severe pain. Epithial layer both times was 90% non viable, donated to Dr. Ilene Gibson, Scheppens, researching dry eye and anterior anchoring problems on DNA level, making some headway and a nice person.
Despite multiple consults, meds, confirmation pain was corneal, nothing worked. Year of pain, hard to talk about, life on hold, wrote some about it in BFS newsletter coming out now, if you get it.
Went to BFS, without hope, ill with pain.
Amazing place, wonderful people, Dr Rosenthal, Dr. Raizman (Opthalmic Consultants of Boston) completely committed to help me fight for my vision, diminished pain and return to life.
Sclerals for both eyes, saline filled, refresh plus, unisol, cleaning with oxycept as no one wanted to take chance of any residual hydrogen peroxide on my fragile corneas, genteal gel at night (can't tolerate ointments).

Wearing sclerals 14 plus hours, when Perry put them in, first pain-free moment in a year, and I laughed! But, still on bare edge of recovery, exhausted, can't drive due to strabismus discovered during this process/prism adjustment. Eyes don't look crossed but apparently have had all my life, compensated somehow, compensation failed due to eye pain. BFS monitoring me closely, adjusting lenses to improve vision, decrease pain, may have best vision I have every had in my life! Possible candidate for study of filling lens vault with sodium channel blocker, block neuropathic pain.
And trying to fight my way back to life, energy low, pain at night, but there isn't anyone here who isn't fighting with me for health and strength. I am lucky and I am having a tough time, finding my way back to work (psychologist), trying to date (in my forties), friends but no family here. Trying to find strength to get back into life, strength that was there a year ago. Sorry, I should post in AM when I'm more hopeful! I am getting great help, have resources to share, am on the board of AngelflightNE, if people need info how to get to the sclerals and my journey has landed me with connection to some of the best medical people. As a psychologist specializing in medical psychology, I was able to glean through what was terrible, to okay to best. Hope this can help others.
I am much better overall, nothing worked for the pain until the sclerals. So glad to have this forum to share and help each other!

Rhoda

[liz56]

I'm so sorry, Rhoda! That's what I get for spending too much time at the computer today.

Thanks for your story. My problems with EBMD and RCE's started last year, too. I had always been misdiagnosed, and it was not until the RCE's started that I finally figured out why my eyes hurt all of the time and that the drops the doctors handed over to me in sample form never did any good.

I'm happy to hear that the sclerals are working for you. It sounds like you have seen some of the very best doctors in the country. I read a little about the basal cells in the basement membrane and work being done to figure out why they are so irregular for people with EBMD. When you have some time, I'd like to hear more about it if you learned anything from that research as it affected your case. My guess is that they have not come up with anything yet, otherwise you would not need scleral lenses.

Thanks, again, for taking the time to post all of that. While I am sorry for all that you have gone through that brought you here, I am glad that you are here. It is a really supportive place. I don't know what I would have done last year if it had not been for the DEZ. It's hard to explain dry eye pain and its related effects to people, even concerned and caring friends and family. People tend to think, "You look okay, so it can't be that bad."

Take care,
Liz

[RCK]

re: ABMD/sclerals, etc.

Hi Liz, hi all.

People do seem to think it isn't as bad as it is, although by 6 months into severe corneal pain, that got harder to say! I was functionally blind, but like most seriously visually impaired people, didn't look it. Started wearing button stating visual impairment and was shocked how many people thought I was making a political statement versus indicating need for occasional help (especially notable at the gym, maybe because of being fairly fit, now fighting my way back to that).

Dr. Raizman (surgeon) and Dr. Gibson have coordinated regular tissue donation after my tissue donations. He is now regularly giving her diseased tissue and matched normal tissue from injuries and she is making headway. She has a good website on women's dry eye issues, here and third world, I'll get the link if anyone wishes. She has found correlations for severity of dry eye and ABMD, excema, asthma, dry skin, dry hair. I hit positive on all. She is saving my sample for the end of her next RNA run, as my ABMD has been noted as one of the most severe case recorded (rather be famous for something else!). She wants to be certain of the RNA splicing technique to use my tissue to it's best advantage.
Given good surgical result, severity of pain was unexpected. Dr. Rosenthal has correlates for that type of "neuropathic" reaction, including severe drug allergies, neurological rapid metabolizer. I need very high dose meds of any sort to get a clinical blood level. What it takes to sedate me for surgery would kill a 300 lb man and I am not exaggerating! Apparently means a nervous system on the synapse level which "chews up and spits out meds" (quoting my primary care) without using them effectively. May also be, in part, related to my having been a preemie infant. So, good correlates in research but no direct answers re: treatment yet, they are effectively heading that way.
Pain level still exhausts me, often wish I could wear the sclerals at night. In general, very ill for last year, in a way I never anticipated and the road back feels tough. I'm sure you and others reading know how it feels. It's hard for me to keep trying, even though I'm a fighter, maybe still grieving this year, pain at night and fear of the disease that I didn't have before. Well, again, should post earlier when I'm more positive! Overall, so much better since the sclerals! Any help I can offer? Any thoughts on struggling back from tough places? I thank you all.

Addition: I realized I never answered your question on how sclerals work! They are porous but firm lenses with a large fluid "vault" filled with saline. That means my corneas are constantly protected, yet bathed in oxygen and saline, allowing whatever natural healing that can occur, to occur. By being close to the eye and most of my hefty prescription [nearsighted, severe astigmatism, strabismus (prisms in glasses though)] being in the lenses, visual distortion, because of damaged corneas, is minimized, vastly improving vision. Last visit, 20/15 both eyes! First time in my life, it's like waking up in one of those old movies, saying "I can see"! I had gotten prisms for the strabismus before the sclerals but until vision improved with sclerals neurological depth perception couldn't happen. Apperently, have never had true depth perception or true binocular vision and somehow, bit of a mystery, how I used cues to drive (never had an accident!), read, sports, etc. Now double vision without prisms, neuro adjustment to prisms is happening but get odd effects, as well as seeing things I never knew others saw textures, depth, etc. Currently trying to find out what will help with the neuro adjustment, anyone know anything, neuro opthamologist says not many like me who adjusted, diagnosis in adulthood (Gee, haven't I heard that somewhere before?!) Thank you, Liz. Thank you, all.

Rhoda