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

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


    Hi everyone, Iíve stepped back for a minute to do some more research and rethink whatís 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 wasnít 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 didnít damage the nerves and neither did the abrasion. A nonsense answer by the way. This guy is a lasik surgeon and doesnít realize making the flap cuts a lot of corneal nerves and is usually performed without a laser?

    The only thing Iíve 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. Iíve 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 didnít 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, Iím certain enough to push for a confocal microscopy on my next visit to UIC. If I get the images, Iíll jump in a computer to upload them here for everyone to see.

    So Iíve tried to think about my eyes in a different way. One thing I couldnít 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 Iíve tried, what Iíve 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, thereís 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 hereís what Iím 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, Iíd ice it. I would not add heat. the reason Iím heating the lids is because I want to melt the oil. Well my oil is coming out clear. What worked for me before isnít 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, itís been extremely effective. Iím using drops much less...but also for the next reason.

    WARM compress - and I emphasize warm. Specifically, Iím 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 thatís 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. Iím also making 100% at home when I canít 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. Itís said that nerves will not properly regenerate in a state of constant inflammation.

    Doxycycline - Iím handling it very well and itís 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. Itís 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, thatís 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 youíre 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, weíre 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. Itís so painful. I believe thatís 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 arenít blinking all the way, it may be that the nerves are getting a corrupt signal saying, donít blink into the pain, avoid the pain. Then dysfunction occurs. Again, Iím just a primate trying to make sense of his injury. I could be wrong. But nothing ended makes sense. My eyes arenít that dry. I can see and feel most of the time they arenít 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. Iíll 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




    Last edited by Dowork123; 11-Oct-2018, 07:58.

  • #2
    FYI, I've personally stopped warm compress from multiple times daily, to once every 5 days.

    I've also done Prokera which has really helped me, have you tried Prokera yet? Prokera can help heal your nerves.

    Comment


    • #3
      Originally posted by deep_dry_eye View Post
      FYI, I've personally stopped warm compress from multiple times daily, to once every 5 days.

      I've also done Prokera which has really helped me, have you tried Prokera yet? Prokera can help heal your nerves.
      The protocol for nerve regeneration is looking to be 18+ months. The protocol is steroids to keep inflammation down and serum 20% 8x a day. I only have two problems with prokera. I believe the ring will hurt my lids/eye and I donít think I can keep it in for 18 months even if I switched them out, assuming money was no object. I like the idea, I may be more inclined to have my AMT sewn in, I will be asking about EVERY option.

      Comment


      • #4
        Originally posted by Dowork123 View Post

        The protocol for nerve regeneration is looking to be 18+ months. The protocol is steroids to keep inflammation down and serum 20% 8x a day. I only have two problems with prokera. I believe the ring will hurt my lids/eye and I donít think I can keep it in for 18 months even if I switched them out, assuming money was no object. I like the idea, I may be more inclined to have my AMT sewn in, I will be asking about EVERY option.
        For Prokera you just need to keep them in for 2-7 days.

        Comment


        • #5
          Originally posted by ebi1368 View Post

          For Prokera you just need to keep them in for 2-7 days.
          I understand, and Iín order for the nerves to heal, the therapy needs to be much much longer. Itís said that a 10% improvement every 3 months would be considered awesome. Read the thread guys, I know itís a lot, but all the information is there. If I could comfortably keep prokera on the eye for that long, I would do it. It took the man in the case study 18 months to feel better. Iím 3 months into my treatment. Again, Iím concerned with following the protocol that has been proven to work as shown by IVCM.

          Comment


          • #6
            Originally posted by Dowork123 View Post

            I understand, and Iín order for the nerves to heal, the therapy needs to be much much longer. Itís said that a 10% improvement every 3 months would be considered awesome. Read the thread guys, I know itís a lot, but all the information is there. If I could comfortably keep prokera on the eye for that long, I would do it. It took the man in the case study 18 months to feel better. Iím 3 months into my treatment. Again, Iím concerned with following the protocol that has been proven to work as shown by IVCM.
            Prokera is usually done once, maybe twice. It's inserted and your eye will absorb the amniotic tissue (usually 2-7 days as mentioned). 20% serum is also a pretty low concentration, you might want to up it. Also, some folks I've talked w/ claim plasma rich platelets to be much better than serum.

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            • #7
              deep_dry_eye

              Can you link me to a reputable source showing improvement in nerve regeneration from prokera shown by in Vivo confocal microscopy?

              Comment


              • #8
                Originally posted by deep_dry_eye View Post

                Prokera is usually done once, maybe twice. It's inserted and your eye will absorb the amniotic tissue (usually 2-7 days as mentioned). 20% serum is also a pretty low concentration, you might want to up it. Also, some folks I've talked w/ claim plasma rich platelets to be much better than serum.
                I posted above I use 20% 50% and I make 100% at home.

                The 20% is whatís recommended, every two hours by Pedram Hamrah. He has shown nerve regeneration with this protocol. The link at the bottom labeled, tommyboy shows a guy that improved with his protocol.

                Comment


                • #9
                  Originally posted by Dowork123 View Post

                  I posted above I use 20% 50% and I make 100% at home.

                  The 20% is whatís recommended, every two hours by Pedram Hamrah. He has shown nerve regeneration with this protocol. The link at the bottom labeled, tommyboy shows a guy that improved with his protocol.
                  What's the sample size? p-values? 1 guy is not statistically significant.

                  Prokera on nerve improvements:
                  https://www.hindawi.com/journals/joph/2017/6404918/

                  However, this is not a reputable journal and 1 of the authors is from TissueTech (maker of Prokera).

                  Comment


                  • #10
                    Originally posted by deep_dry_eye View Post

                    What's the sample size? p-values? 1 guy is not statistically significant.

                    Prokera on nerve improvements:
                    https://www.hindawi.com/journals/joph/2017/6404918/

                    However, this is not a reputable journal and 1 of the authors is from TissueTech (maker of Prokera).
                    I linked two here, but Iíll link more for you. His sample size is his patient population, however large that is. He came up with this protocol and has proven its benefits by tracking nerve growth. I have a couple good examples that it works...Iíll provide more though...text wall to follow in the next day or so.

                    Comment


                    • #11
                      Originally posted by deep_dry_eye View Post

                      What's the sample size? p-values? 1 guy is not statistically significant.

                      Prokera on nerve improvements:
                      https://www.hindawi.com/journals/joph/2017/6404918/

                      However, this is not a reputable journal and 1 of the authors is from TissueTech (maker of Prokera).
                      Did you read the methods on this study? Because the participants wore prokera for max 3-5 days and were told to then continue with maximum treatments....which included serum tears among other drugs. So this study didnít isolate prokera as the causitive agent. Probably grew the nerves because of the constant application of serum and anti inflammatories. If anything, Iíd say this proves my point. But I wonít say that, because I canít account for what prokera did either. Garbage lol.

                      so people can see it easily....

                      excerpt...For the study group, PKS was inserted in the office under topical anesthesia with 0.5% proparacaine hydrochloride eye drops. After placement, the subjects were asked to continue topical medications as needed and return 3Ė5 days later to remove the PKS. Subjects in the control group were asked to continue their conventional maximum treatment throughout the duration of the study including artificial tears, cyclosporine A, serum tears, antibiotics, steroids, and nonsteroidal anti-inflammatory medications. All subjects returned at 1 and 3 months for clinical evaluation.

                      Comment


                      • #12
                        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. ďYou are not your painĒ, I really really recommend it. Both authors suffered trauma and subsequent severe pain requiring opioids.

                        Comment


                        • #13
                          Originally posted by Dowork123 View Post

                          Did you read the methods on this study? Because the participants wore prokera for max 3-5 days and were told to then continue with maximum treatments....which included serum tears among other drugs. So this study didnít isolate prokera as the causitive agent. Probably grew the nerves because of the constant application of serum and anti inflammatories. If anything, Iíd say this proves my point. But I wonít say that, because I canít account for what prokera did either. Garbage lol.

                          so people can see it easily....

                          excerpt...For the study group, PKS was inserted in the office under topical anesthesia with 0.5% proparacaine hydrochloride eye drops. After placement, the subjects were asked to continue topical medications as needed and return 3Ė5 days later to remove the PKS. Subjects in the control group were asked to continue their conventional maximum treatment throughout the duration of the study including artificial tears, cyclosporine A, serum tears, antibiotics, steroids, and nonsteroidal anti-inflammatory medications. All subjects returned at 1 and 3 months for clinical evaluation.
                          Like I said , this journal isn't reputable and the authors are obv biased.

                          However, if you read the details, yes, Prokera patients continue w/ existing treatment, but so does the control group as you pasted. And hence, it's still a valid study protocol. More importantly, you need to look at the p-values, which is p=0.015 in Section 3.4, which is statistically significant, but not super convincing either.

                          For example, see Fig 4, it is promising. It's obviously not a complete study as there is only 20 patients, and the control does not have a placeblo and not double-blind (and hence published in not a top tier journal).

                          Comment


                          • #14
                            Originally posted by Dowork123 View Post

                            I linked two here, but Iíll link more for you. His sample size is his patient population, however large that is. He came up with this protocol and has proven its benefits by tracking nerve growth. I have a couple good examples that it works...Iíll provide more though...text wall to follow in the next day or so.
                            As in you linked two patients? That is not statistically significant. Additionally, the ophthalmologytimes.com article you linked is not peer-reviewed.

                            I'm not doubting this protocol, but I'm doubting whether you can draw (strong) conclusions based on these anecdotal evidence. As you probably know, things that work for 1-patient may not work for another patient (you); restasis is a classical example.

                            This protocol may or may not work for you, but what I am suggesting is that Prokera is an (additional) option for treatment. You should consider it. It is minimal risk, definitely much better than taking steroids long term, and may help you.

                            Comment


                            • #15
                              Originally posted by deep_dry_eye View Post

                              As in you linked two patients? That is not statistically significant. Additionally, the ophthalmologytimes.com article you linked is not peer-reviewed.

                              I'm not doubting this protocol, but I'm doubting whether you can draw (strong) conclusions based on these anecdotal evidence. As you probably know, things that work for 1-patient may not work for another patient (you); restasis is a classical example.

                              This protocol may or may not work for you, but what I am suggesting is that Prokera is an (additional) option for treatment. You should consider it. It is minimal risk, definitely much better than taking steroids long term, and may help you.
                              Iím not here to argue clinical significance. Anecdotal evidence of actual patients getting well means more to me than any study. The article was a doctor taking about his patient. It was clean and simple. The last one is a member here who saw the same doctor, same protocol, got his life back. Again, means more to me than a study with too many confounding parts.

                              I have to cosider if a treatment will will be negative for me also. Because any irritation will set me back. I know myself, I canít wear soft contacts without inflammation. The prokera ring will irritate my eye im certain. So Iíve decided the benefits donít outweigh the risk. I believe there are better treatments for me personally.

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