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Hi everyone, I’ve stepped back for a minute to do some more research and rethink what’s going on here with my eyes. Ive suspected neuropathy from the beginning. My eyes hurt so badly, I had to close them to walk. I had focal facial dystonia, mostly lock jaw, had no clue why, other than I thought I was gritting from the pain. When I went into my corneal specialist to get serum, I told him I was suicidal from the pain. He dismissed me. I asked for a confocal microscopy, he said it wasn’t necessary.
My signs not matching my symptoms at all, was a real problem for me, still is. No one I saw took nerve damage seriously. I had one doctor tell me when I asked about nerve damage, he said, no possible way. I said not even with the eye that had the debridement, it was a deep cut, way worse than the original injury? He said, did she use a laser? I said no...then she didn’t damage the nerves and neither did the abrasion. A nonsense answer by the way. This guy is a lasik surgeon and doesn’t realize making the flap cuts a lot of corneal nerves and is usually performed without a laser?
The only thing I’ve ever felt good on was serum tears. I would bet anything at this point that I have peripheral corneal neuropathy. I believe the damaged corneal nerves are responsible for all the dysfunction...lacrimal gland, meibomium glands, levetor muscles in eyelids, eye muscles, etc. I’ve had foreign body sensation and burning, focal facial dystonia and blepharospasm, migraines and pressure behind the eyes and finally, anxiety, depression and apathy. My signs do not match my symptoms (OSDI 65) and no staining. Pain without stain. These are all symptoms of corneal neuralgia. I believe I had some dry eye before the injury, but the damage to the nerves caused the entire system to dysfunction beyond my control. The constant inflammation didn’t help and is likely caused by the nerve damage. This has been a long road trying to understand this, I could even still be wrong. But I post my thoughts regardless because they may still help someone else as I continue on my path. However, I’m certain enough to push for a confocal microscopy on my next visit to UIC. If I get the images, I’ll jump in a computer to upload them here for everyone to see.
So I’ve tried to think about my eyes in a different way. One thing I couldn’t shake off about my treatment, was how each thing I did, had some positive and some negative impact on my eyes. For example, in treating my lids with a hot compress, my cornea always took a hit from the heat. It would get very dry, gritty as all hell and hurt at times, but my glands would release oil and the lids would get healthier. Conversely, when I tried to treat my cornea with eye drops, the drops would burn my lids or crust onto my lashes. Inevitably making my lids worse. This has me running in circles, heat the lids, dry the eye, add drops, agitate the lids...just a vicious cycle. So how do I try and break this, or at least manage it better?
I decided to try and rethink this, based on what I’ve tried, what I’ve read and what I believe is going on in my heart. Inflammation is my biggest problem. The question is, how can I control inflammation without steroids? Steroids work great, I love them, but even on a strong steroid, my right eye is burning like crazy. Which makes me realize, there’s something else wrong, and I must find out how to treat it. Right now, I could live with the left eye, the right one has me suicidal at times. So here’s what I’m trying.
Cold compress instead of hot - I decided to go with cold and see if I could lower the inflammation that way. I thought, if I hurt my knee, I’d ice it. I would not add heat. the reason I’m heating the lids is because I want to melt the oil. Well my oil is coming out clear. What worked for me before isn’t adequate anymore. Honestly, I probably should have been doing both at precise times. I also believe that the cold will calm the nerves. So far, it’s been extremely effective. I’m using drops much less...but also for the next reason.
WARM compress - and I emphasize warm. Specifically, I’m going to 40C and letting it cool on my lids for 15 mins then repeating. So my warm compress time has gotten longer, with less heat. This seems to be adequate for melting and also prevents inflammation. I use this much less, as needed. Seems to be every 24-36 hours.
Moisture chamber glasses - Because I believe my nerves are interpreting normal stimulus as noxious, I bought the zenia seacrest glasses with the nereus eye cup. These have stopped the burning in the right eye 90% and I use commercial drops about 6-8 times a day now as opposed to 20+. Not using as many tears is really allowing me to heal. I also want to mention that I believe my use of the glasses is slightly different if my issue is neuralgia. For me, in order for the nerves to calm down, I have to prevent stimulus to them. This is key to getting the condition under control (if that’s even possible) with minimal inputs.
Autologous serum - 20% and 50% whatever I have access to, I use them a minimum once every two hours. Sometimes much more, every hour if I can. These have helped me a great deal as a lot of you already know. I’m also making 100% at home when I can’t get to the doctor. I use the protocol set out by Lui et al.
Preservative free steroids - methylprednisolone 1%, this is one of the few drugs that works to lower inflammation. I love them. They will also give the nerves a proper chance to heal. It’s said that nerves will not properly regenerate in a state of constant inflammation.
Doxycycline - I’m handling it very well and it’s really helping with my oil production. Oil is coming out clear and relatively easily. This drug is making the extreme heat of the compress unnecessary.
Avenova - hypochlorous acid, for lid hygiene as I do have lid disease. I had that before the damage, but of course, the injury set it overboard.
Oasis tears, saline, gel (still looking for a good PF gel) - standard of care, as you all know.
Time - I linked a few articles. One of them is written by Pedram Hamrah. It’s a case study about a man in his late thirties that had refractive surgery 5 years prior, had a touch up at the 3 year mark, and had corneal neuropathy as a result. After 18 months of treatment with Lotemax gel twice a week and 20% serum every two hours. The patients OSDI went from 65 to 8 (I believe it was 8, it was single digit for sure, that’s HUGE) and had an 80-90% resolution of subjective symptoms. Only a 20% increase in pain during windy conditions down from 90%. Meaning he felt wayyyy better. So the biggest number here for me 18 months. I need to relax and stay the course for another 15 months. Before I do any surgery or take any drastic measure....I need to see this trough. So hard when you’re in this much pain, as you all know.
I want to also say I have a theory here. When a person experiences corneal damage, weather from refractive surgery or a trauma, a total dysfunction occurs. I believe the corneal nerves control everything, the lids, the conjunctiva, the eye muscles, lacrimal gland, the meibomium glands, etc. as soon as the nerves are damaged, all the working pieces become paralyzed or dysfunctional. The MGD, aqueous deficiency, incomplete blink, lagopthalmos, etc are not diseases in and of themselves, they are actually symptoms of a greater disease, corneal neuralgia. If this is true, we’re not testing the cause of the problem. Yes you still have to treat the MGD, lacrimal gland, etc to keep them healthy, but we really need to focus on two things, nerve regeneration and extinguishing inflammation. Managing all the peripheral issues as we heal the nerves. What makes me say this? My worst eye is now my best, I feel the left eye like a glass marble on most of the cornea. In the exact spot she scraped the poorly healed cells. My right eye, I still feel gritty pain in the exact spots of the injury. It’s so painful. I believe that’s the nerves. I believe my cornea was improperly innervated after the initial damage. So now, normal stimulus like my lid resting on my eyeball when I sleep, or a blink, be one a noxious and painful experience. So normal tasks are interpreted as pain. And so we avoid them. Blinking us a great example. If you aren’t blinking all the way, it may be that the nerves are getting a corrupt signal saying, don’t blink into the pain, avoid the pain. Then dysfunction occurs. Again, I’m just a primate trying to make sense of his injury. I could be wrong. But nothing ended makes sense. My eyes aren’t that dry. I can see and feel most of the time they aren’t that bad, but I still burn and hurt with gritty pain.
Below are the links to a few articles, hopefully it helps someone else to hear this. I’ll keep you all posted of course.
AAO ocular neuropathic pain link
http://eyewiki.aao.org/Ocular_Neuropathic_Pain
Ophthalmology times Hamrah corneal neuropathy case study
http://www.ophthalmologytimes.com/op...-defeats-tears
Socretes dry eye zone
http://forum.dryeyezone.com/forum/ar...s-could-be-you
Tommyboy success and protocol
http://forum.dryeyezone.com/forum/co...gs-can-improve
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