Post Lasik Corneal Neuralgia/Dysaesthesia

[Neerav1989]

I am a post Lasik casualty. For the first time in more than 2 years, I am going to describe the story of my life devastating post Lasik complications. It is extremely difficult for me to even sit in front of a computer screen and type. I have given up on life and I hope other post Lasik corneal neuralgia patients on this website can help me. Any suggestions will be greatly appreciated.

Here goes the story:

I underwent LASIK on 17^th December 2014 in India. When I resumed office after Lasik, I started having pain/burning in my eyes. The pain/burning was extreme even though I was not working on computer. I kept putting lubricating eye drops in my eyes 4-5 times a day. But the same didn’t help me.

My symptoms kept getting worse with time and it became impossible for me to perform my day to day activities. As I was in panic situation, I consulted multiple doctors and they said everything is fine with my eyes and I don’t have to worry. Even 3 months post LASIK, my symptoms of burning/pain were extreme. One of the doctors told me that corneal nerves get cut during LASIK and it can take up to 6 months for corneal nerves to regenerate. That sounded logical and gave me some comfort. (Meanwhile I also started seeing a lot of floaters, around 25-30 on a white wall) However, even after 6 months, my symptoms were extreme. I took leave from office. Even though I was giving complete rest to my eyes, I had immense pain in my eyes throughout the day. As a result of excruciating pain, I even had thoughts of suicide as no one had an answer or solution to my problem.

8 months post LASIK, I finally felt some comfort level and the pain in my eyes somewhat stopped. However, I kept having burning in my eyes almost all day. None of the lubricating eye drops helped me. Burning was absolutely killing me and absolutely nothing helped with burning. I could not even read a newspaper for more than 5 minutes. 16 months post lasik I consulted 2 different cornea specialists and they diagnosed me with Post LASIK corneal neuralgia. With the advice of cornea specialist, I started with Tacrolimous ointment (which is the only thing till date that has helped me with burning). However, after using Tacrolimous ointment for 3-4 months, it started causing me extreme dryness sensations which are unbearable. I tried alternating between 0.03% Tacrolimous ointment and 0.1% Tacrolimous ointment. But the ointment was making my life hell. So after using it for 6 months, I had no choice but to stop it.

I also tried punctum plugs in all 4 of my tear ducts as well as cauterization of all 4 tear ducts. The seame did not help me at all. I have tried all the lubricating eye drops available in India and USA. None of them help at all as the problem is corneal nerve regeneration and not inadequate tear production. I have also consulted neurologist and had tablets Gabapentine, Amitriptyline, Duloxetine and Oxcarbazepine. Needless to say that the tablets have not helped.

Currently, it has been 26 months since LASIK. Pain in my eyes has also started (I had almost a year without much of a pain). The pain is there continuously for 15-20 days and then there is no pain for 15 days. It is like really weird and impossible to explain. I feel extreme and unbearable dryness sensations in my eyes every single day and it is literally killing me. Nothing works at all in my eyes. However, when the doctors checks and perform Schirmers test and measures Tear Break Up Time, it comes out to be perfectly normal. Slit lamp examination shows absolutely nothing wrong with my eyes. Doctors are saying that my eyes are generating false dry eye alarm all the time due to the damaged nerves.

I am almost disabled right now. The extreme disabling sensations of dryness are worse than any disability that one can imagine. I do think of ending my life at times as I am unable to do absolutely anything. I am yet to try sclerals but doctors believe they won't help as the problem is the false dry alarms generated by the damaged nerves.

I would be really grateful if any of you can help me.

[Hokucat]

Hi Neerav. Sorry to hear about your situation. I had a similar situation although not due to LASIK, and am much better now, so don't give up. There are many on this website who have gotten better after issues from LASIK, so you are at the right place for advice.

You say you have yet to try sclerals, but you should at least try on a sample of the sclerals to see for yourself if it helps or not. Just make sure you go to a doctor who is very experienced successfully fitting sclerals. You should be able to try on a sample for a few hours which is close to your fit before deciding to go forward with the lenses. Mines are Boston PROSE scleral lenses which I wear at least 12 hours a day. Below is a link to Boston lenses which provides a good overview as well as locations that fit their lenses...there are some locations in India:

http://www.bostonsight.org/PROSE/PRO...ats/Post-LASIK

Things will get better. Please take care.

[pythonidler]

Sorry to hear that you're in so much pain.

Have any of your doctors mentioned serum tears as a possible treatment? Serum tears are eye drops which are made from the serum in your blood. The regenerative factors in serum help heal the nerves in your eye. They can be expensive (on the order of $1,000/year), but they can work extremely well for patients with corneal neuralgia/neuropathy.

I myself use serum tears about 12 times a day, and they have definitely helped me. Before I started using them, I had a constant grittiness sensation in my eyes. But within a couple weeks, the grittiness started going away. Now, I feel virtually no grittiness at all.

Though your circumstances are different from mine (I didn't have LASIK), I suspect serum tears might work for you as well. Though I have heard the time it takes for them to work varies between a few weeks and several months.

I would mention serum tears to your doctor and ask to be put on them right away. You'll need to find a compounding pharmacy that can make them for you. In the States, there's at least one pharmacy in each major metro area that makes them. I'm not sure about India, though.

[pythonidler]

Here's a thread from someone who had a similar experience:
http://www.dryeyezone.com/talk/forum...-almost-normal

Sounds like they got better by using serum tears.

[Neerav1989]

Thanks a lot guys for quick reply

I actually forgot to mention a couple of things in order to make the post shorter (and readable ).

I have already tried 20% serum (with 80% CMC). I used them for around 3 weeks but they simply didn't help and caused a lot of dryness. It could be because of the 80% CMC. Actually all lubricating eye drops make me feel very very dry.

I am currently using 100% serum tears for more than 2 months now. It did help me a little (say 20%) for 2 weeks and after that it is not helping at all it seems. I am experiencing unbearable dryness sensations/dysaesthesia throughout the day. But I read somewhere that I have to keep putting serum tears for 1 year to have some improvement. Before that it is pointless to even think whether it is helping or not. And yes i will be trying sclerals in a few weeks. will keep you guys updated on the progress.

Meanwhile I just have a couple of questions regarding serum tears. Would be great if someone can throw some light.

1) Is it fine to put 100% serum tears in eyes ? Does anyone believe 100% serum can harm eyes in anyway ? I haven't felt any side effects in 2 months. But there are many doctors in India who says they won't recommend more than 40% serum at all.

2) How many times do you guys feel 100% serum needs to be put ? I am currently putting it 4 times a day.

And in India, it is very cheap to get serum tears. I just pay Rs. 500 per month (around 8 US dollars) for serum tears.

[Neerav1989]

Here's a thread from someone who had a similar experience:
http://www.dryeyezone.com/talk/forum...-almost-normal

Sounds like they got better by using serum tears.

Thanks a lot. some good info. I checked the thread. Seems to be very old. Would really want to know how those guys are doing after 5 years. Would those guys reply if I post in such old thread. I don't know how it works on dryeyezone as I am very new to the website.

[Hokucat]

That's great serum tears are so inexpensive in India! That's unheard of almost everywhere else.

I used 100% serum tears for two years, and did not have any negative side effects. I initially used them four times a day for a few months, then also started putting a few drops on my scleral lenses before filling the rest with saline, so I could try to have the healing benefits of the serum tears be on my eyes all day long. I can't say for sure if the serum tears helped me. My doctors all told me the surface of my eyes were like sandpaper (I had zero tear film, Shirmers in both eyes almost always = 0) and all during the time I used the serum tears the surface continued to be the same, and I did not feel any better. However the doctors were surprised that I never had any corneal abrasions, so perhaps the serum tears and/or sclerals helped prevent that.

I have also used various lower % concentrations of serum tears, but like you, it made my eyes feel worse. During those really dry years, anything in my eyes made me feel worse EXCEPT 100% serum tears, Tears Naturelle Free preservative-free artificial tears, and Genteal severe dry eye gel.

Good luck with the scleral lenses in a few weeks. They are definitely worth a try given all you've tried so far. For me, they are an integral part of helping me function daily.

[pythonidler]

Neerav,

As I mentioned, everyone is different in terms of how long it takes to respond to serum tears. Some improve very quickly (like myself), and others take up to a year.

It would be great if your doctor had a confocal microscope or some other device that can take high resolution images of your cornea. That way, you will know if you are making progress or not.

[Neerav1989]

That's great serum tears are so inexpensive in India! That's unheard of almost everywhere else.

I used 100% serum tears for two years, and did not have any negative side effects. I initially used them four times a day for a few months, then also started putting a few drops on my scleral lenses before filling the rest with saline, so I could try to have the healing benefits of the serum tears be on my eyes all day long. I can't say for sure if the serum tears helped me. My doctors all told me the surface of my eyes were like sandpaper (I had zero tear film, Shirmers in both eyes almost always = 0) and all during the time I used the serum tears the surface continued to be the same, and I did not feel any better. However the doctors were surprised that I never had any corneal abrasions, so perhaps the serum tears and/or sclerals helped prevent that.

I have also used various lower % concentrations of serum tears, but like you, it made my eyes feel worse. During those really dry years, anything in my eyes made me feel worse EXCEPT 100% serum tears, Tears Naturelle Free preservative-free artificial tears, and Genteal severe dry eye gel.

Good luck with the scleral lenses in a few weeks. They are definitely worth a try given all you've tried so far. For me, they are an integral part of helping me function daily.

Thanks Hokucat My situation is completely opposite to yours. My shirmers in both eyes has been absolutely normal for last 2 years and TBUT has been more than 12 seconds. Yet, I feel unbearable dryness sensations almost all day. Its great to hear that you are doing well with sclerals. I will keep you updated about my progress although I do feel hopeless now after battling for 26 months.

[Neerav1989]

Neerav,

As I mentioned, everyone is different in terms of how long it takes to respond to serum tears. Some improve very quickly (like myself), and others take up to a year.

It would be great if your doctor had a confocal microscope or some other device that can take high resolution images of your cornea. That way, you will know if you are making progress or not.

Thanks Pythonidler. Actually Confocal microscope is available only at 2 places in India and I have to travel at least a 1000 miles to get confocal microscopy done. But I will take your advice and tell my doctor about the same.

Meanwhile I wanted to know what % of serum you are using ? are you mixing it with saline or some other eye drop ? and do you feel it is fine to use 100% serum ? because I do plan to keep using 100% serum for at least a year.

[Hokucat]

My unbearable dryness stage was at 5 years before finding resolution, looks like pythonidler was four years, and many suffering like you from LASIK have been able to get better after several years, so you will be able to get better too. It is tough while you are going through it. You are on the right track to speeding up the solution(s) for you by reaching out in this forum and asking questions, keep it up!

[Neerav1989]

Thanks a lot Hokucat. I can't express my gratitude enough for your kind words. I really feel I am on right track by reaching out to this forum.

Meanwhile have you tried Tacrolimous ointment ? It did work wonders for me for 3-4 months. not sure if it is available in your country. But it is worth a try, may be once a day when you go to bed.

[Hokucat]

I've never heard of Tacrolimous ointment. I'll look it up and keep in mind in case I need to expand my treatment options in the future. If not me, it might be something others reading this post may want to look into. Thanks for mentioning it, Neerav!

[pythonidler]

Thanks Pythonidler. Actually Confocal microscope is available only at 2 places in India and I have to travel at least a 1000 miles to get confocal microscopy done. But I will take your advice and tell my doctor about the same.

Meanwhile I wanted to know what % of serum you are using ? are you mixing it with saline or some other eye drop ? and do you feel it is fine to use 100% serum ? because I do plan to keep using 100% serum for at least a year.

I have a feeling confocal microscopes aren't common in the States either. They're probably really expensive machines, and it costs a lot to have a technician on staff who can operate it. In your situation, since serum tears are so cheap you don't have to worry about whether you're really making progress or not. You can continue to use them indefinitely, even if you don't feel like you're improving.

I use serum tears that are 20% serum and 80% saline. My doctor told me to use it 8x/day. But since I was given more serum tears by my compounding pharmacy than I'm able to use before they expire, I actually use maybe 12-14 drops a day.

As for whether it is OK to use 100% serum - I have read about other people on this forum using 100% serum, so I'm sure it's probably safe from a medical standpoint. The question is, will you get better faster by using such a high concentration. That is probably a question for a doctor who is familiar with research into serum tears.

[Hokucat]

Hi Neerav. I wanted to mention tart cherry supplements or tart cherry juice. Tart cherry is a natural pain reliever and anti-inflammatory that might help you with the burning and pain likely from your damaged corneal nerves. My dad had nerve pain in his back and leg, and after he took the supplements he said the pain was greatly diminished. I had muscle and joint pain in all my extremities (likely from autoimmune disease), and it totally went away after I started taking the supplements. Below is a link to the supplement we take, in case you want to try it...we each take 4 per day, 2 in the morning and 2 in early evening:

https://www.amazon.com/Solaray-Tart-.../dp/B00172MWJC

These supplements work better than the juice for me. I never thought something like tart cherries could be so powerful, but am so glad to have discover them. Plus there are no side effects.