Help! Ocular surface neuropathy?

[Elizabeth3715]

http://www.dryeyezone.com/talk/showt...4551#post74551

[Elizabeth3715]

I'm bumping this thread as I believe this is my problem. The latest I've heard from my opthamalogist is..."Your eyes look healthy. Continue the Alrex, Restasis and come back in four months."

The problem is that my eyes feel HORRIBLE. I cannot read, work on a computer, or do much of anything. I have and continue to feel life is not worth living. Any help, direction, advice would be appreciated.

[bakunin]

My eyes look healthy as well.

For ophtalmologists, if your pressure is good, if you don't have erosions, if your eyes aren't red, your eyes are healthy.

I know neuropathy is not my case because i do have dry eyes. My TBUT is low and the relative humidity makes a huge difference in my pain.

If you feel worse in AC, fans, wind, low humidity, i think it is because you have dry eyes, not simply neuropathy.

[Elizabeth3715]

That's the thing...I don't feel worse in AC or with low humidity. And wind will actually make my eyes tear and feel better...
I was hoping that with more humid weather in the summer in Wisconsin I would feel better but it really has not made a bit of difference.

[bakunin]

That's the thing...I don't feel worse in AC or with low humidity. And wind will actually make my eyes tear and feel better...
I was hoping that with more humid weather in the summer in Wisconsin I would feel better but it really has not made a bit of difference.

So I think you're a good candidate to have neuropathy. If neuropathy is the case, the good side is that your eyes are really healthy and you won't have problem with them. The bad side is that i suppose there are even fewer things that can be done to neuropathic pain than for dry eyes related pain.

[patrick]

Hi all,

My latest opthalmologist just recently advised me to go visit one of those pain clinics we have here in holland,because like all the opthalmologists i,ve visited till now he told me; 'you have dry eye in a certain degree,but not at all the stage that can cause the severe pain you describe''. Okay,but i am telling the truth. What now?
I really haven't got a clue what to expect there. What are the tools they have in such places to establish the stage of pain i experience and what are the different approaches they use in an effort to lessen the pain in a costructive way?
Do they only use systemic painkillers or maybe topical as well? I really do not know what to expect.
My first contact with one of the members of the staff in the clinic wasn't too promising though. She literally said; we haven't heard before of chronic pain after refractive surgery. No previous patients ever treated before with this kind of chronic pain issues. Again a confirmation this condition is so ultra rare here. Almost nobody knows what to to with it.
I will share my experiences in this forum and keep the people interested in this topic updated,but for now i will have to wait till i get a date for my first appointment and waiting lists are quite long here. It can take weeks before i here something from them.

Patrick...

[Elizabeth3715]

I wll be interested to hear your experience, Patrick.

[kanon]

Well, Patrick, I could go to the same pain clinic and then they will have 2 of us.

[Carocade]

I had refractive surgery and now I have corneal neuropathic pain....I wear the scleral lens which help blunt the pain, and I was in a clinical trial in Boston with Dr. Rosenthal using light therapy to heal the nerves...he is gone now, and not sure what I do now. Boston Foundation for Sight is supposedly still working on this issue and Rebecca says they report that the pain issue is beginning to get attention in general, so hopefully (and prayerfully) help is on the way.

[abbygirl]

Hi Carocade,
I am curious as to what kind of refractive surgery you had?

[Gabriel]

Well I feel the same way after lasik. Dr. says eye look good and healthy but I have terrible pain. I know I have dry eye because sometime my eyes will haze up and get blurry after a second of blinking. I do think it has effected my mixing layer.

[Gabriel]

I meant mucin layer. Dang phone.

[patrick]

Well, Patrick, I could go to the same pain clinic and then they will have 2 of us.

hi ashley,

i just got back in holland.
yes! we could meet up there and have a chat.
that would most certainly be different than in a obvious place like bar or so
haven't been very active lately in finding the right place for eyepain issues,but now that i am back i want to do that asap. as well as finding a lab where i can have these autologous eyedrops made. (according to what i have heard this is possible in the hospital in utrecht,but not 100% sure about that).

patrick...

[tommyboy]

I was also just diagnosed with Corneal Neuralgia at BFS. I am on a course of serum tears now. They took pictures with a confocal and told me none of my nerves grew back and the serum would regenerate the nerves.

Carocade, did you try serum tears already? Did you do a confocal?