EBMD: looking for some advice

[Sneeuwelfje]

Hi all,

I found this website during the week-end and was really happy to find information on EMDB here. My husband has always been complaining about dry eyes (especially in the morning), but it was never diagnosed…A year ago, we went for him to do a laser surgery, during the take-in he told the team he had dry eyes, but no information was asked, nothing was done with it… And the day of the surgery, the surgeon quickly noticed that my husband had EBMD while he was making the flap, so he didn`t continue… However, my husband`s condition has worsened since and I was really looking up some information to get him some help, as he gets the erosions every x weeks.

We have been back to the laser surgery team, and to an independent ophthalmologist, but they don`t get his eye stabilized. Up until now, he has had:
- bandage lenses
- Sensitive Eyes Lense Lubricant (Bausch + Lomb)
- Liposic Ophtalmic Gel (Bausch + Lomb)
- Refresh Tears
- Refresh Liquigel
- Omega 3 fish oil
- recently started with vitamin A and lutein-zeaxanthin
- got him the Genteal PM gel, gel drops and drops
- just got him a humidifier, especially for the nights

My husband has been advised to eventually have PRK, but in order to have the surgery, his eyes need to be stable. So if anyone has some experience, tips and tricks, ... we`d be very happy with it

Thanks!

[Pinklady]

Hello

My daughter has EBMD and has done for the last 2 years. She is only 3 so I can only give you our experience with a child but hopefully someone else may be able to help. There is lots of useful information on this website.
We have tried; Celluvisc, Systane, Lacri Lube and currently using Hylo Forte hourly through the day and VitaPos at night time.
She has also has Alcohol Delamination in both eyes and we may repeat this again on her left right.
She has punctual plugs top and bottom.
Surgery wise - We have also considered Stromal Puncture and Diamond Burr polishing but we are not keen on these surgeries.
She currently has Bandage Contact Lens in both eyes and has done since July lasy year. These are changed every 4-6 weeks. We will continue with these for another 2 months before removing them and seeing how her eyes cope without them.
Our final option is PTK. We live in the UK and this isn't available here for children so we will need to go abroad. This will be a last resort though.

My daughter has having erosions every month but this has decreased with the contact lens. Every 3 months or so now.

Other things I can advise you probably already do - keep well hydrated, wearing sunglasses in windy, sunny conditions, not to use air conditioning, use humidifier, put eye drops into eye BEFORE opening eyes first thing in the morning, not to get too tired and run down.

Hope this is of some help and hopefully someone else can help you

[mgshutterbug]

Also have EBMD/ABMD

I also have EBMD/ABMD (seems they like to call it ABMD now in the U.S., or at least at Hopkins and U of MD). Mine is relatively "mild" I'm told, but comes into play frequently because of severe dry eye disease due to botched neurosurgery back in 2010 for something unrelated to eyes. I was getting RCEs every 1 1/2-2 weeks the last job that I worked. Some were so severe I couldn't work at times. I finally had to stop work because of this, and some other medical issues. I had been prescribed Muro 5% Ointment at night, Muro eyedrops during day, and Genteal gel drops or Muro ointment during day during worst erosions. But of course w/ointment in during the day, I couldn't see well enough to do my work. Muro, by the way, is not to be used by anyone, is for specific condition and though is OTC, must be prescribed for use. Anyhow, I already had gone the route of lower plugs, BCL because of erosions that were very large and refused to heal. After the last one healed, my doctor decided to put in upper plug as well in that eye. Now I haven't had any more erosions, have had a few abrasions, but cannot see well because of overflow of tears. When I dab the excess, then my eye is bone dry for ages. And I have to put drops in. But w/o the plugs...erosions. Pinklady, I am sorry your young daughter has been through so much. I don't think what I said helped much. You've already done far more than I have, her EBMD is obviously very severe. I wish you luck!

[liz56]

Hi, Sneeuwelfje.

I am really glad that the LASIK surgeon noticed your husband's EBMD and halted the procedure. I understand that damage was done, but it could have been far, far worse.

I also suffer from EBMD, which manifested as RECs for about nine months until I got it under control. However, I maintain my condition (which also has improved my comfort and sharpened my vision) in the following ways:

1. I wear TranquilEyes goggles at night to keep my eyelids closed;
2. Like MGShutterbug, I also use Muro 128 5%, but I use the drops rather than the ointment, and I apply it every four hours;
3. I make sure to get at least 6.5 hours of sleep each night;
4. I often steam my eyes before bedtime so as to optimize my lid margins to provide a good, natural lubricant through the night.

I wish your husband well. Once a cornea with EBMD has been injured, it is prone to RCEs and, thus, re-injury.

--Liz

[Sneeuwelfje]

Hi all,

Thank you so much for your replies.

Pinklady: I`m so sorry to hear about your daughter, she is still so small... I really hope the bandage lenses help her eyes getting stable... For my husband it helped to get through the hardest times.

Mgshutterbug: I`ve read a lot of positive things too about the Muro 5%. The thing that held me back is that it is a prescription drug. We received the Genteal gel drops yesterday in the mailbox, and up until now he is pretty happy with this. The humidifier didn`t help a lot though... I also forgot to mention, the day of his surgery, they inserted plugs too in his eyes (the permanent ones, only the lower lid).

Liz56: We`re now waiting for the PM Gel (Genteal) to arrive, but it might indeed be a good idea to steam the eyes before bedtime, I`ll tell him

[cebeth]

Hello all,

I have recurrent corneal erosion in only one eye due to an injury now almost 4 yrs later. I wish that I did not have ANY surgery. For me it has not helped. I have had the anterior stromal puncture, superficial keratectomy with diamond burr (barbaric) and PTK. Nothing worked and I have been wearing a bandage contact lens for almost 3 years (other than changing monthly) until last week. I still would have erosions under the lens at times, but it helped the most. Now I have "dry spots" on my cornea and I am convinced it is from the lens. The Dr. won't say for sure. I took it out last week. I am using ointment at night and Optive preservative free tears during the day. I also have punctal plugs and they do help with the dryness a lot. I also recently was diagnosed with blepharitis and now I do warm soaks to the eye/eyelid twice a day with lid wipes, and take Doxycycline twice a day. I also have a humidifier in the bedroom. I ordered the dustbuster glasses from the Dry Eye Shop to wear outside and I am also thinking of ordering the TranquilEyes that Liz56 uses. I couldn't use TranquilEyes when I was wearing the bandage contact lens. I also take TheraTears Omega 3.

Please see a corneal specialist if you can and if you do not get better, get a second opinion. I am finally going for another opinion in April. I now have pain even when I am not having an erosion and have been diagnosed with corneal neuralgia. It is not fun.

The cure rate for RCE with the PTK laser is only 90%. FYI. It ruined my night time driving vision and it didn't get rid of the erosions.

cebeth

PS: For the mom with the little girl with the erosions: I will pray for your daughter and for your family. I can not even imagine. I have to take Percocet for the erosions.

[cebeth]

It has been previously posted, but learning to awaken with your eyes closed and using the eye drops (tears) to let your eyes open has also helped me a lot because my eyes stick together in the morning. This has prevented many erosions.

[Sneeuwelfje]

@ Cebeth: indeed... I got him the Genteal PM and this works wonders for him he tells... And opening the eyes very slowly when waking up.

[liz56]

I wish that I did not have ANY surgery. For me it has not helped. I have had the anterior stromal puncture, superficial keratectomy with diamond burr (barbaric) and PTK. Nothing worked and I have been wearing a bandage contact lens for almost 3 years (other than changing monthly) until last week. I still would have erosions under the lens at times, but it helped the most.

Cebeth, I'm really sorry to hear about your experience with surgeries. I did not feel that they were right for me, and I am glad that I found a doctor who wanted to give it time to work out before resorting to it. I know how it might feel desperate, though, in the throes of RCEs to try surgeries, but, you're right, if the surface has trouble healing, it stands to reason that more trauma (which surgery is) might not be good.

I'm glad to know that the BCL is working for you, as is taking time waking in the morning.

--Liz

[cebeth]

@ Liz,
The bandage lens did help some, but I still experienced erosions under the lens. Unfortunately, I developed corneal neuralgia and dry spots on the cornea. I stopped wearing the bandage lens about 3 weeks ago after reading in a medical book, "Extended wear soft contact lenses are often used as a therapeutic modality for recurrent erosions resistant to medical therapy with topical hypertonic saline. However, animal studies suggest that extended contact lens wear worsens epithelial adhesion."
I feel certain that the very thing that was supposed to help me has now caused me harm. I asked my Drs many times if the bandage lens could be causing my problems. I'm seeing a new corneal specialist next month.
Liz, I am glad that you waited it out, did not have any surgeries and no longer have erosions. RCE is a life altering condition.

[Pinklady]

Cebeth - You mention using bandage contact lens for 3 years. We are currently using these for my daughter - its been 8 months now. Have you completely stopped using them now? Are you still getting erosions? I am very worried about the risk of infection whilst using these. So far my daughter has only had one infection. Did u get many infections over 3 years?
Thanks!

[cebeth]

Pinklady,

I was very lucky and never did get an infection the entire time wearing the bandage lens. Make sure your daughter closes her eyes when she gets her hair washed so not to get any water in her eyes. You probably know that already.
I took the lens out almost 3 weeks ago and yes, I have had 2 erosions since then, but I got erosions with the lens in as well. Constant battle. I'm going to leave the lens out until next month when I see a new corneal specialist.

Do you know why your daughter gets erosions? I feel for her and you.

Beth