New with ABMD and erosion

[Nimmykins]

Hi, I've been recently diagnosed with ABMD after extensive treatment for a corneal erosion.

I've had dry, itchy eyes for about 13-14 years, and earlier this year began experiencing seering pain in my right eye.
In June I developed a corneal erosion, although I think it had been pulling apart since last December.

I'm lucky to live very near Sussex Eye Hospital in Brighton (East Sussex, UK), and received two lots of emergency treatment there (when the erosion occurred again), plus follow ups and a surgical consultation, which has confirmed the ABMD diagnosis this week.

My reaction to this diagnosis was mixed. I felt relief after knowing something wasn't right with my eyes for years, having been dismissed by GPs who "couldn't see anything" and suggested "just use eye drops", and complete freak out, dystrophy is not the word you want to read on a hospital letter.

Searching for information on the internet brought me here. I hope to pick up ideas to help heal my eye and stop this condition impacting on my life, as it has done in recent months. My colleagues think all I do is put drops in my eyes.

At the moment I'm using Hypromellose drops, as well as viscotears and simple eye ointment at night. It's working well so far, and at least I don't have an infection (my second visit to eye hospital A&E involved having parts of my erosion scrapped off and I've had two courses of antibiotics).

It's wonderful to find this site.

[liz56]

Hi, Nimmykins.

I'm sorry to hear about ABMD manifesting as erosions. I understand that 90% of people live with it and never have RCE's.

I am glad that you found this site, too.

Read around and see what looks good for you to try. It sounds like you have found a comfortable management routine, and that counts for a lot. It took me a long time to get there, but once I did, I find that I can get by.

On another positive note, I understand that the word "dystrophy" is sometimes contested by researchers, because ABMD is not progressive, and dystrophies, by definition, are. So, technically, it should be called something else, according to some.

Let me know if I can be of any help.

--Liz

[Nimmykins]

Thanks for the welcome Liz56

I've been wandering around the board a bit today, there's so much to take in and I'm already finding it extremely useful and informative. I think I need a new folder in my bookmarks for dry eye information.

[RCK]

ABMD/Rhoda/Boston/USA

Hi Nimmykins, Liz,

Rhoda in Boston, AMBD info, layman's view but info from my very good treaters. I have posted just recently under intro section with some info. In case I am off in any way, would like to get Michael Raizman, MD (surgeon/Opthalmic Consultants of Boston), Perry Rosenthal, MD/scleral lenses (Boston Foundation for Sight) and Ilene Gibson, Ph.D./researcher/dry eye/anterior/anchoring disorders of cornea (Scheppen's Eye Institute/Boston) to post here, will ask them.
I have a very severe case so don't get panicked by me, please?! AMBD is usually genetic, but has "low penetrance", meaning, you inherit it as a dominant gene but for as yet unknown reasons, only half of a percent of people who have it show symptoms. All who have it can be seen to have the characteristic map-dot-fingerprint corneal appearance on slit lamp exam but only less than half a percent go on to develop the characteristic recurrent corneal erosions. I did warn relatives to get checked as LASIK surgery can turn a lifelong asymptomatic person into very symptomatic. Sorry, Liz, I've been told it is a dystrophy but the debate is about the fact that, unlike other dystrophies, it is non-progressive. This sounds good, sort of, but what it means is for unknown reasons, corneas can be fine one day and deeply eroded the next, even if you have just seen your opthamologist and have perfect looking corneas. It does seem to happen one eye at a time (thank God!).Thats how it happens with me. I had 3 years of "remission" after first surgery (erosion to 90% of top 4 layers of right cornea, overnight, only warning, in retrospect was unusual clumsiness, sign of early vision loss). All my surgeries have involved some scraping to remove non viable tissue but have also used the Excimer laser (not LASIK!!!) to regenerate viable tissue, Dr. Raizman is a known expert in this. Second severe episode, July, 2007, overnight again, vesicles, erosions, bandage lens with antibiotic drops (read post of someone who had bandage lens without antibiotic drops, causes terrible infections!), then PTK [photo therapeutic kerakectomy (sic)], more bandage lens, antibiotic drops, etc.
Surgery went well, complication of removing non-viable epithelium (donated to Dr. Gibson), was severe neuropathic pain, hence scleral lenses now.

Small hints, use only drops that do not have preservatives in them, I have been told that ABMD corneas don't tolerate and can't clear preservatives well and that single use drops minimize chance of infection. Obvious exceptions are antibiotic drops, mine are always "broad spectrum" like "Zymar". Refresh Plus single use, Unisol, also have good luck with genteal gel (not ointment, in my situation). MD also minimizes use of anesthetic and diagnostic agents [floroscien(sic)], again minimize anything he calls "junk" my corneas can't easily clear.
My limited understanding of this dystrophy is the problem is that the anterior layer of the corneas genetically lack the cells and enzymes that help the cornea to "anchor" to its own layers and to the eye and to heal itself, hence it lifts up, tears, erodes, etc. I wrote some on research happening here in my intro post on correllates of why some are symptomatic and others not. Dr. Gibson is researching in the RNA level, Dr. Raizman is regularly giving her tissues samples (mine included), she's good. Don't know if they will find answers in our lifetime but they are trying to find the RNA differences. Problem is I think any long-term solution may be gene therapy, i.e. inserting missing cells, don't know how close we are to finding ways to do that safely in general.

I was misdiagnosed for years by a major eye hospital here. They eventually implyed I was causing my own erosions (Munchasin's), I grabbed my records and ran. I'm a medical psychologist so was able to find good MD just in time as right eye failed 3 months after diagnosis, would have been far worse if I had not known what was wrong and who to call. That day, called Dr. Raizman, spoke to him in two minutes, he asked me to get there by cab, within 20 minutes of waking up in terror, pain, severe vision loss, saw him and had a treatment plan. How often does that happen? I am very lucky!
I also freaked out about the name and the diagnosis, what helped me was to remember that all dystrophy means is a weakness of the tissue, a vulnerability and we all have vulnerabilities. I also needed to grieve. There are now things that can be done to minimize the weakness, repair as needed and life can go on. It isn't easy and most people don't get it, either the pain or visual impairment. Either denial or it's not visible what is wrong. It helped me to pick my battles, some people will never get it, some will and will be surprised and then help.

I hope I can help. All my best wishes. Would love to hear from you or anyone.

Rhoda

[liz56]

Hi, Nimmykins and Rhoda.

Rhoda, it is not easy not to be panicked by your story. Knowing what I have been through and hearing your story really makes me feel what you are facing. My gosh. I don't know what to say.

Ultimately, do you think that the PTK helped? Had you ever had an eye injury previous to the erosions? Have you Nimmykins?

The ideas about the cornea not being able to process debris or other molecules makes a good deal of sense. However, Dr. Holly's eye drops (Dwelle) contain a preservative, and I am having luck with them. I wonder why that is. Perhaps it is an issue for him to explain.

Although I am so very sorry for everything that you are going through Rhoda, I am also grateful to have you here. I am learning a lot from you, and I appreciate your explanations.

--Liz

[RCK]

re: panic/apology

Liz,Nimmykins,

I'm sorry. Please know I've been told I have the most severe case recorded. Most cases are not like this.My struggle is very unlikely to be yours. The typical course is occasional erosions, painful, very treatable. No corneal injuries, but my case is affected by being a very premature infant, which affected corneal development and affects the course of my genetic form of ABMD. Yes, absolutely PTK was vision saving, both times, necessary and successful. I began to see better during the procedure! Second time complications had to due with other factors. I feel badly I gave you so much info and caused bad feelings for you and potentially others. As a professional in an ancillary medical field, I forget that things that are routine for me might upset others. I'm very sorry and will be more careful in the future. Just because I'm the sort of person who is calmed by info doesn't mean that is what others need. Overall, I have 20/20 vision, vastly decreased pain with sclerals and excellent treatment which is giving me long periods where I can almost forget the dystrophy. Please let me know what info is and isn't helpful to you and others. Again, I'm sorry if I overwhelmed anyone and will try to respond to questions more supportively in the future. This is a very treatable problem, doesn't have to run life and I am hopeful for myself, you and others walking this path.

With deep respect and apologies,

Rhoda

[liz56]

Rhoda,

Oh, there is no need at all to apologize! You stated up front that your case was extremely severe, and your information is so good. I am grateful to you for sharing and hope that my admitting that your story is hard to hear does not deter you from being as open, honest, and helpful as you have been.

The thing that bothered me most was thinking of the pain that you must feel at night without the scleral lenses. I'm so sorry for that. I remember how awful nights were for me when erosions would wake me up with tears, pain, and reduced visual acuity. When I hear that anyone else is going through that, it just brings up the kind of affinity that war veterans must feel for others who were in a war.

Your discussion about the basement membrand failing to adequately remove debris, especially in the form of preservatives, caused me to make a change that actually helped me this morning. Rather than use bland eye drops (Tears Naturale II) to help me get my eyes opened this morning, I used PF Refresh. I had been getting pain in recent mornings and was wondering if my dystrophy was acting up, even though my vision has been stable. This morning, I kept still, did not bother with massaging my eyes to produce my own tears, and just poured a vial of PF Refresh into the corners of my eyes. They opened so smoothly and did not burn. So, thank you for that. I am going to keep using those and see if my mornings improve.

I hope that you continue to post what you know and what you've experienced without hesitation. I think that your posts have been helpful and sensitive to what others are going through.

Take care,
Liz

[RCK]

Liz, all,

Glad it helped! I was afraid to write again, felt I had frightened people. I can definitely understand that my story might raise fears, bad memories. Didn't mean to do that and will be more careful. Pain is tough at night, but so much better after the sclerals! They seem to act in a healing fashion that lessens night pain. things absolutely get better!!!
I had a similar experience with preservatives, used to take a prescription drop before the sclerals, discontinued a few weeks ago as ineffective for it's purpose and "not worth the preservative". Within two doses, less that 12 hours, eyes less gritty, apparently couldn't clear the meds or the preservatives. I have good luck with genteal gel at night, no preservatives, my eyes don't clear ointment at all. Genteal gel (not ointment) liquifies in the eye, wash out in AM is minimal, unisol, refresh plus or nothing, seems to clear itself, it is pricey.
So glad about your success this morning. I was truly afraid to write again, didn't want to hurt anyone, even accidentally. Hang in there, all, there is hope and lots of medical progress and options. I'm an example of without hope to healing through medical dedication and creative options. Lucky and hopeful!!!

Rhoda

[Nimmykins]

Hi Rhoda, Hi Liz

I'm not freaked out, you stated your situation, if anything I feel comforted to know I'm not alone with this pain.

Until this year I'd never had an erosion, although I had experienced discomfort in my eyes.

The worst bit, when I was finally sent to the emergency department at the eye hospital with my first proper huge erosion, was being told by a junior doctor that I might have shingles in my eye. Naturally she called the consultant over and she confirmed the erosion.

I've seen two juniors, two consultants and a surgeon at the eye hospital, and they're pleased with the way things are going.

I'm out of my single dose stuff now, but I'm using what the surgeon suggested which does have a preservative in it. The anti-biotics were Minims and the drops were Celluvisc. Both were lovely, but I'm quite happy with the way things are going now.

After coming here I slept with an eye mask last night, and it felt good, although my eyes are stuck together with oinment in the morning.

I need to renew other prescriptions, if I can't get Celluvisc over the counter I'll see if I can get some that way.

I'm so glad I've never been tempted by LASIK.

[Nimmykins]

At least now I have some explanation. I saw my mother on Friday, and she has ABMD and RCE symptoms, and so, it turns out, does her mother.