Cornea neuralgia as a result of refractive surgery or corneal trauma.

[Guest]

I am glad you are taking corneal neuralgia seriously. I was not able to get confocal microscopy, and even recognized dry eye specialists failed to see nerve malfunction as an issue. This is still very much a novel concept to them.

I have had shitty days with TBUT of 11-15s and low osmolarity and no staining. My journey is still unfolding with ups and downs.

I started listening to a book recommended by another user during my recent flare up. “You are not your pain”, I really really recommend it. Both authors suffered trauma and subsequent severe pain requiring opioids.

Thank you, that’s why I posted the thread. I think it’s important we look at corneal neuralgia as a disease in and of itself. I’m going to ask for a confocal in my next visit to UIC. If he doesn’t give me one, I’ll get one elsewhere. I need to now what’s going on here. I know my eyes are better, wearing moisture chambers all waking hours, on steroids and serum, clear oil from my glands, loys of tears. My right eye still burns and feels so gritty. All in the areas of my injury, upper 1/3 of cornea. Which is why my upper lid doesn’t interact with my eye properly on the right side.

[edmunder]

There is a corneal neuropathy facebook group. Many of the people go to Dr Hamrah and there are many prople who improved. Its the Lotemax gel every other day or twice a week plus blood serum 8+ times a day over a year.

People also tske other psin relievers during this time such as gabapentin ( im on this, very small dose but it works well) or others.

I have read that many people on Accutane get corneal neuropathy because the eye gets bad slowly over a long period where the nerves get damaged badly over that period. Especially at the end. This is what happened to me.

Moisture chambe/goggles + lotemax gel + blood serum all day + gabapentin has given me back my life in many ways, though ive inly been on blood serum plus steroids a month its helped a lot. I will continue for a long time. My pressure actually decreased on steroids plus blood serum.

[Guest]

There is a corneal neuropathy facebook group. Many of the people go to Dr Hamrah and there are many prople who improved. Its the Lotemax gel every other day or twice a week plus blood serum 8+ times a day over a year.

People also tske other psin relievers during this time such as gabapentin ( im on this, very small dose but it works well) or others.

I have read that many people on Accutane get corneal neuropathy because the eye gets bad slowly over a long period where the nerves get damaged badly over that period. Especially at the end. This is what happened to me.

Moisture chambe/goggles + lotemax gel + blood serum all day + gabapentin has given me back my life in many ways, though ive inly been on blood serum plus steroids a month its helped a lot. I will continue for a long time. My pressure actually decreased on steroids plus blood serum.

First off, I’m so happy to hear that you’re doing better. I know it’s not great, but only a month in is promising.

im in the same boat as you pretty much exactly. Moisture chambers, methylpred, serum at least every two hours, oxycodone. I’m thinking about a trycyclic antidepressent if the pain doesn’t get where I need it to be. So glad your pressures good...you can use steroids, they’re so strong, that’s great. Have you run an antibiotic yet like moxafloxacin or an ointment like erythromycin? I want to add this soon to the right eye and see if I can get some more comfort. This right ones on fire right now, moisture chambers on and everything.

let me also add..what you said about accutane, I think the same goes for lasik. You get a reduced blink rate and damage accumulates over time. You don’t realize it then one day, everything just falls apart. There may be a defining incident, there may not.

[Guest]

Dowork123 I've basically come to the same conclusions as you regarding neuropathy.

Also I think with confocals it's still early days in interpretating them. I've talked to a lot of people and 'damage' on the confocals doesn't always match how people feel. After lasik the nerves never look the same. I've also talked to someone with a twin and they both had a confocal. One had extreme pain and dry eye the other had nothing wrong but they both had nerve damage on the scan (neither had any eye surgery).

[Guest]

Dowork123 I've basically come to the same conclusions as you regarding neuropathy.

Also I think with confocals it's still early days in interpretating them. I've talked to a lot of people and 'damage' on the confocals doesn't always match how people feel. After lasik the nerves never look the same. I've also talked to someone with a twin and they both had a confocal. One had extreme pain and dry eye the other had nothing wrong but they both had nerve damage on the scan (neither had any eye surgery).

Do you know if they determined weather the pain was centralized or not? Some people, as you said, can have nerve damage and not feel it. They can also have pain and no nerve damage present on the confocal. So yes....I even made a post to someone saying the same thing. Trying to find nerve pain is like catching air. But I have to find better treatment...which may mean drugs that act on the nerves. I think regardless of the confocal, if the pain continues like thus, we may have to just treat it as neuropathy anyway. But if the confocal dies show something, treatment can begin sooner. This is more a time thing than a proof thing, if you understand what I mean.

[Guest]

Dowork123 - My friend is a doctor that studied medicine at Cambridge and works in anaesthetics. He said centralised pain is poorly understood. Some people diagnose centralised as present if anaesthetic does not work - but it doesn't work on me and sclerals take away my pain which would then suggest I don't have centralised pain otherwise why would they work? Here is the info he gave me on pain if it helps.

Pain is an essential special sense, required for animal/human survival. It is defined as the physiological response to actual or perceived tissue damage. Classically, though arbitrarily divided into acute (<6 weeks) or chronic (>6 weeks, and persisting beyond the period of tissue damage).

Acute pain is typically nocieptive, I.e. you get poked with a needle, or touch boiling water, or acid - it activates receptors which signal to the brain => it hurts. It can alternatively be neuropathic - if I squash a nerve (eg sciatica) this causes a distinct, but significant pain.

Pain, as opposed to any other sense, tends to sensitize over time. This is unique to pain. That is prolonged stimuli results in 1) non painful stimuli hurting (allodynia) - e.g airflow across the face hurts or combing hair causing pain, and 2) painful stimuli causing more pain than it ‘should’ (hyperalgesia) - eg people with fibromyalgia experience exquisite pain to ‘normally’ minimally painful stimuli.

How this sensitisation happens is complex. There are peripheral and central theories. There are definitely genetic, environmental and psychological aspects to centralisation.

At its most basic:
Peripheral sensitisation occurs due to:
1. Mg block release at NMDA receptors in the dorsal horn ganglia meaning that instead of getting brief AMPA mediated depolarisations, you get a prolonged NMDA action potential. More signal —> more pain.
2. Sprouting of neurones. More peripheral neurones mean non painful stimuli can activate postsynaptic pain pathways.

Central sensitisation is poorly understood.
1. LTP strengthens synapses which fire frequently
2. Reduced firing of desensitising descending pathways (e.g the endogenous opioid pathways suppress pain less)
3. Cortical remodelling

This is influenced by many factors, many not understood, but genetics, gender, drugs, psychological distress amongst others play important roles.

There will alwaya be a central component in people with chronic pain. However, regarding peripheral sensitisation... We know local anaesthesia preferentially blocks c-fibres (smallest nerves). Allodynia often Ad mediated (larger fibres) which LA does little for. The excessive dendritic sprouting is a big cause of allodynia.

Drugs for chronic pain are widespread and variably effective: tricyclics, gabapentinoids, duloxetine, antiepileptics, ketamine all have uses and are effective for some, and not for others. Almost all patients can find a drug regime which is opiate sparing, which has a positive effect for them, though finding this is a frustratingly slow process and requires patience to find what works for the individual.

Psychological strategies with chronic/severe pain based on a cognitive behaviour therapy model are showing very promising results, and we must not forget the complex psychological component of pain, and the way this effects mood/stress/daily functioning. Addressing this is some groups, though not all, has excellent benefits.

[diydry]

Hey man, thanks for the update! So much to unpack here, but I'll just mention a couple things that resonate with me (from my layperson, non-expert perspective!)

1) Warm Compress - totally agree. While I can't advocate this for others, I've recently gone down from doing them every day to once or twice a week. I just don't notice much of a difference, I've tried a zillion methods and products. I wonder if there's a sense in which the treatment has become dogma. I have no doubt that it works wonders for some people (ironically, it helped me a lot more a few years ago) but I suspect it only works for certain kinds/stages of MGD. For instance, my oils are pretty thin right now according to my doctor, so compresses probably won't thin them significantly further. I'm planning to do more cold compresses to address the redness/inflammation and will keep you posted.

2) Refractive trauma - i'm with you. I believe when the nerves are damaged it throws the ocular surface homeostasis into dysfunction, so it's not just lacrimal dryness but MGD, blink rate, all is affected. Sometimes I think LASIK is the closest thing to getting an eye transplant (like in the science fiction movie Minority Report) because you basically get a new ocular surface and a new set of nerves, and you don't know if it's going to work, just like you don't know if a new kidney is going to function properly. This is hyperbole (LASIK doesn't affect the retina or optic nerve thankfully) but you get the point.

3) Confocal - thanks to Lena11 for the interesting observations, especially the anecdote about the twins. I believe it's true that our understanding of pain is just not very good. There's a lot of chronic pain diseases out there we're still trying to understand. I haven't had a confocal microscopy, and part of me wants to get it badly, but at the end of the day, I'm not confident in the results enough to tell me anything conclusive or even change the treatment plan for that matter. If a doctor recommends it, I'll consider it.

[Guest]

Dowork123 - My friend is a doctor that studied medicine at Cambridge and works in anaesthetics. He said centralised pain is poorly understood. Some people diagnose centralised as present if anaesthetic does not work - but it doesn't work on me and sclerals take away my pain which would then suggest I don't have centralised pain otherwise why would they work? Here is the info he gave me on pain if it helps.

Pain is an essential special sense, required for animal/human survival. It is defined as the physiological response to actual or perceived tissue damage. Classically, though arbitrarily divided into acute (<6 weeks) or chronic (>6 weeks, and persisting beyond the period of tissue damage).

Acute pain is typically nocieptive, I.e. you get poked with a needle, or touch boiling water, or acid - it activates receptors which signal to the brain => it hurts. It can alternatively be neuropathic - if I squash a nerve (eg sciatica) this causes a distinct, but significant pain.

Pain, as opposed to any other sense, tends to sensitize over time. This is unique to pain. That is prolonged stimuli results in 1) non painful stimuli hurting (allodynia) - e.g airflow across the face hurts or combing hair causing pain, and 2) painful stimuli causing more pain than it ‘should’ (hyperalgesia) - eg people with fibromyalgia experience exquisite pain to ‘normally’ minimally painful stimuli.

How this sensitisation happens is complex. There are peripheral and central theories. There are definitely genetic, environmental and psychological aspects to centralisation.

At its most basic:
Peripheral sensitisation occurs due to:
1. Mg block release at NMDA receptors in the dorsal horn ganglia meaning that instead of getting brief AMPA mediated depolarisations, you get a prolonged NMDA action potential. More signal —> more pain.
2. Sprouting of neurones. More peripheral neurones mean non painful stimuli can activate postsynaptic pain pathways.

Central sensitisation is poorly understood.
1. LTP strengthens synapses which fire frequently
2. Reduced firing of desensitising descending pathways (e.g the endogenous opioid pathways suppress pain less)
3. Cortical remodelling

This is influenced by many factors, many not understood, but genetics, gender, drugs, psychological distress amongst others play important roles.

There will alwaya be a central component in people with chronic pain. However, regarding peripheral sensitisation... We know local anaesthesia preferentially blocks c-fibres (smallest nerves). Allodynia often Ad mediated (larger fibres) which LA does little for. The excessive dendritic sprouting is a big cause of allodynia.

Drugs for chronic pain are widespread and variably effective: tricyclics, gabapentinoids, duloxetine, antiepileptics, ketamine all have uses and are effective for some, and not for others. Almost all patients can find a drug regime which is opiate sparing, which has a positive effect for them, though finding this is a frustratingly slow process and requires patience to find what works for the individual.

Psychological strategies with chronic/severe pain based on a cognitive behaviour therapy model are showing very promising results, and we must not forget the complex psychological component of pain, and the way this effects mood/stress/daily functioning. Addressing this is some groups, though not all, has excellent benefits.

Thank you, these responses are the reason I love this site. Your case is so odd...proparcaine doesnt take away the pain, but a scleral does. I can’t agree more with your points. I think psychology plays a huge role. I listened to a gentleman from the university of Michigan speak about how some people’s pain levels are amplified by their brain. That certain people are just more prone to chronic pain. That’s hard to quantify, but I know it’s true.

I guess im just so sick of being in pain. I’d like to push for better care, but I think in the case of neuralgia, I may just have to wait. Simply because I need to exhaust other optics first. At this point, I’m frantic because I don’t want a failure and then have to wait longer to get an answer. It’ll be a year this month. I’m thinking it’s going to be another year before I get a really good plan of attack over here. That in and of itself causes anxiety. Thanks for listening and sharing. Hope you’re doing well.

[Guest]

Hey man, thanks for the update! So much to unpack here, but I'll just mention a couple things that resonate with me (from my layperson, non-expert perspective!)

1) Warm Compress - totally agree. While I can't advocate this for others, I've recently gone down from doing them every day to once or twice a week. I just don't notice much of a difference, I've tried a zillion methods and products. I wonder if there's a sense in which the treatment has become dogma. I have no doubt that it works wonders for some people (ironically, it helped me a lot more a few years ago) but I suspect it only works for certain kinds/stages of MGD. For instance, my oils are pretty thin right now according to my doctor, so compresses probably won't thin them significantly further. I'm planning to do more cold compresses to address the redness/inflammation and will keep you posted.

2) Refractive trauma - i'm with you. I believe when the nerves are damaged it throws the ocular surface homeostasis into dysfunction, so it's not just lacrimal dryness but MGD, blink rate, all is affected. Sometimes I think LASIK is the closest thing to getting an eye transplant (like in the science fiction movie Minority Report) because you basically get a new ocular surface and a new set of nerves, and you don't know if it's going to work, just like you don't know if a new kidney is going to function properly. This is hyperbole (LASIK doesn't affect the retina or optic nerve thankfully) but you get the point.

3) Confocal - thanks to Lena11 for the interesting observations, especially the anecdote about the twins. I believe it's true that our understanding of pain is just not very good. There's a lot of chronic pain diseases out there we're still trying to understand. I haven't had a confocal microscopy, and part of me wants to get it badly, but at the end of the day, I'm not confident in the results enough to tell me anything conclusive or even change the treatment plan for that matter. If a doctor recommends it, I'll consider it.

Hope you’re doing well, thanks for the response and for reading the post. I’m wondering, do you believe there will ever be a way to “fix” us? Do you think corneal trauma could ever be fixed or cured? I’m trying to wrap my head around if its even possible. If not, where can we go from here? I’m trying to figure out why my left eye, the one with more trauma (initially it was worse and then we scraped it a month after the injury) is now somehow my better eye. Did we “fix” or help the left one by removing the damaged cells? Is it possible to do that again? Is that why the left is even feeling better?

Questions I don’t think I’ll ever have the answer to. I do believe that if this was just dry eye, I wouldn’t be suffering this bad because objectively, I think I’ve come a long way. Maybe it is dry eye and I’m just a wimp. I have a lot of tears. They may not be great tears, but they’re better than they were. But these corneal sensations happen even if I’m not technically dry. I don’t think it’s true dryness, I think it’s the sensation of prior damage. The question is, can anything be done about it? Is my issue with the basement membrane? Then can we resurface the eye, control inflammation (which we are), recognize my allergies, implement a better protocol and get good healing? The next question is, would u even risk it again?

Jist a lot going on, as you said.

[Guest]

Dowork123 it's interesting your left eye is the better one. In talking to surgeons and people I have come across a few cases where ptk (removing the top layer of the eye), cutting the lasik flap or even removing the whole lasik flap have cured people with neuropathy - dry eye to neuropathy cases and lasik to neuropathy cases. Basically the theory is these destroy the nerves in the sub basal plexus and the hope is they grow back normally. But who knows for sure!

There are also some experiments being done with truetear plus cbd that seem to be helping some people. New things developing all the time. Most people in the lasik neuropathy group are feeling a but better after a year with serum plus lotemax but it's a long journey

[ebi1368]

Dowork123 it's interesting your left eye is the better one. In talking to surgeons and people I have come across a few cases where ptk (removing the top layer of the eye), cutting the lasik flap or even removing the whole lasik flap have cured people with neuropathy - dry eye to neuropathy cases and lasik to neuropathy cases. Basically the theory is these destroy the nerves in the sub basal plexus and the hope is they grow back normally. But who knows for sure!

There are also some experiments being done with truetear plus cbd that seem to be helping some people. New things developing all the time. Most people in the lasik neuropathy group are feeling a but better after a year with serum plus lotemax but it's a long journey

How do Drs define that someone has Corneal Neuropathy?

My left eye is much worse compared to my right one. When I did lipiview, my left score 38 and right scored 70. Also, my left eye was more AD than my right eye. Working on computer is not painful for me but I have severe menthol sensation especially with moving air.

Does it mean that I have cornea Neuropathy?
I am doing Serum at the moment (2 weeks in). I joined facebook lasik complication group but it gave me really bad stress. I thought I just keep reading this forum.

[Guest]

ebi1368 yes I left the lasik group pretty quick.

Talking to people who are sure they have neuropathy most either
- Are like me and feel severe pain 24/7 even with their eyes shut. Literally no relief even from drops.
- Or they have some sort of severe burning or feeling of cuts in their eyes despite there being no/little staining that fluctuates in pain level.

Most people with neuropathy are suicidal from their level of pain and may get their dry eye better in terms of lipid layer or tbut but feel no relief.

Overall it's hard to tell when dry eye becomes neuropathy...I don't think anyone can tell you that you have it for sure but it's more a gut feeling. My eyes were dry to start with and that pain was bad but now they feel very different - enough so that I would kill myself if I can't find relief.

[edmunder]

How do Drs define that someone has Corneal Neuropathy?

My left eye is much worse compared to my right one. When I did lipiview, my left score 38 and right scored 70. Also, my left eye was more AD than my right eye. Working on computer is not painful for me but I have severe menthol sensation especially with moving air.

Does it mean that I have cornea Neuropathy?
I am doing Serum at the moment (2 weeks in). I joined facebook lasik complication group but it gave me really bad stress. I thought I just keep reading this forum.

i think that menthol feeling are your nerves firing that something is wrong on your eye. I read a very good article that when the tear film isn’t correct on the eye the temperature changes and causes a person to blink. But when that doesnt help, over time as the cornea is open to air and damage the nerves suffer damage. Do that long enough and there is some level of neuropathy.

[ebi1368]

i think that menthol feeling are your nerves firing that something is wrong on your eye. I read a very good article that when the tear film isn’t correct on the eye the temperature changes and causes a person to blink. But when that doesnt help, over time as the cornea is open to air and damage the nerves suffer damage. Do that long enough and there is some level of neuropathy.

Do you know if Prokera helps that?
My doctor keep telling it doesn’t help me and he is reluctant to try it on me.

[edmunder]

Sorry I dont know much about Prokera. Ive talked to my eye doctor about Prokera for my bad eye but in his mind unless I solve the bad tear film issue Prokera wont help much. He suggested sclerals to cover the eye and keep doing IPL to improve the tear film. Wear goggles for now until sclerals.

In his mind Prokera is for people with cornea damage, not for dry eye sufferers. I dont know much about it to argue against that.