I'm in the Twilight Zone and can't get out

[Kathee]

I'm a 57 year ol Regustered Nurse who has been suffering for over a year with chronic bilateral eye burning. I've been diagnosed with severe dry eyes, ABMD where my eyes look like maps, one corneal ulcer and neuropathic corneal pain.
I'm a patient at Wills Eye in Philadelphia and have some of the best doctors in the country. I was sent to Boston for Prose but after returning to my lifestyle I cannot wear them. Tried bandage lenses and they also were very irritating. Now facing the diamond burr debridement procedure. What I'm interested in finding out is info on the debridement. Is it only done to prevent further corneal erosions or can it help with corneal pain also?
I'm at a loss as to what to do anymore. I use serum tears, Muro, preservative free tears, gels, mucomist drops, doxycycline 50mg twice a day. All with no relief. I've had bilateral cataract surgery as I developed fast growing cataracts which took my vision within 3 weeks. My right eye sees 20/20 but my left is 20/400 as my cornea is so irregular since all this started.
So back to the debridement - has anyone had this done and could it improve my pain and burning? I no longer have a quality of life of any type. Any suggestions out there?
Oh I cannot use ointments or goggles and cannot tolerate any type of heat near my eyes

[indrep]

Was a reason given for such rapidly developing cataracts?

[Kathee]

No. They saw a start of cataracts in both eyes in March 2013, and 3 weeks later I could no longer see distance in my right eye then in May after my right eye cataract surgery my left eye vision was 20/400. Extremely fast growing cataracts. Nobody has an answer for this. I've also been tested for every autoimmune disease possible. I think something is attacking my eyes and not microbial either as I've had all kinds of cultures taken

[littlemermaid]

Kathee, you are a brave and inspiring woman, and thank you for sharing your experience with this. What a relief to have good doctor support. Have Wills Eye looked for a genotype for dystrophies? http://www.nei.nih.gov/eyegene/ I think map-dot-fingerprint is not inherited though.

Some children here have had alcohol debridement. Hopefully someone who has had diamond burr or laser therapy (PTK) will see this.

Good that they are looking after your cataracts so well. Is it from steroid eyedrops?

Have you met other patients through Wills Eye? is there eye clinic support or a patient group? I'm so looking forward to these services developing for us all.

[Kathee]

I originally was in an cornea eye clinic at Wills Eye but was so frustrated with seeing different doctors everytime I went. My cataract surgeon told me to ask for private appointments with a certain doctor. I did this and now only see one cornea specialist whom I just adore and highly respect. She is my angel.
I want on steroids long so it didn't cause the cataracts. The extremely fast growing cataracts have all the doc stumped. Even those in Boston who are all Harvard doctors couldn't figure it out. My case is a difficult one as I have many aspects that have to b considered. I've been tested for all autoimmune diseases but I truly believe that whatever is causing this is autoimmune. Just hast shown up in my blood yet.
I hope someone knows about the diamond burr debridement. I'm at a point that they can just take my left eye out and I truly wouldn't care. The pain is so horrible and its now over a year and a half. The neuropathic pain is the most horribl pain one could have. I still have some fight left in me but not for long. Dr Rosenthal has been in touch with me also. He's interested in my case due to the neuropathic pain. He still is in research and hopefully comes up with something to help this God awful pain.

[NotADryEye]

And definitely no conjunctivalchalasis? It's sometimes misdiagnosed as neuralgia or neuropathy.

[indrep]

I recently attended a surgery on a patient with a very, very irregular cornea. The surgeon removed all of the epihtelium and then placed amniotic membrane on the cornea. Five days later the cornea was regular and clear with a slight haze that the surgeon said would clear up in a few more days. I am not sure if this is a similar procedure that your surgeon has suggested.

[bookwoman]

Kathee,

I am also patient at Wills Eye with neuropathic pain and it sounds likely that we have the same amazing, compassionate corneal specialist. Please let me know if there is any way I can help.

[Kathee]

Well I had the debridement Monday. Actually it wasn't as bad as I expected. Won't know the outcome for a few more days yet. I have a bandage lens on but if its not healing as expected then I will get the amniotic membrane put on to help with healing.
Yrs the corneal specialists at Wills Eye in Philly are some of the best doctors I have ever met. I'm an RN and before going to Wills I had seen dozens of eye doctors who should not be practicing at all.
I'm not good at this computer stuff as I am using my iPhone but I'll try and post how this debridement turns out.
Book woman I wish I could contact u personally as I can see we have some things in common. We very well may have the same cornea specialist. I have seen just about every specialist at Wills because at first they thought I had pemphigoid. My next step will be to see a Neuro Ophthalmologist. I hope to b able to wear my Prose in the future but have to wait till I heal. I'm hoping I will b able to wear my Prose in the future but that is a big IF.
Thank U all for your posts. Nice to know I'm not alone.

[bookwoman]

Kathee,

So glad the surgery went better than you thought! I will be hoping for a smooth recovery. Let me send you a personal message now.

[Logandly]

Hi Kathee.

Have you tried Taurine supplements? I highly recommend.

Taurine is necessary for healthy eyes and reversing retinal diseases.

http://www.ivlproducts.com/Health-Li...of-the-Retina/

Logan x

[Kathee]

Thanks Logab. I have read about Taurine and found this supplement very interesting.

[Roe72]

Hi Kathleen. We have a lot in common as I also have had the Ptk procedure for ABMD. They say my eye looks great but it hasn't helped my corneal pain. Lyrica is the only thing that really helped that and I had some bad side effects and have had to quit taking it. My severe pain is at night! I have scleral lens which I usually wear until about 4:00, sometimes later. Pain starts around 6 or 7. Is really bad by 8 at which point I go to bed. My quality of life completely sucks too.

[liz56]

Hi, Kathee.

I am just checking in to see how your eyes are doing after the debridement. I recovered from RCEs but still suffer from dry eye, due to ABMD, but I manage it with drops and babying my eyes a lot. I never went the surgical route, but I am always curious about how it turns out for people who opt for it.

I hope you are doing better.

--Liz