Nerve regeneration after lasik

[Guest]

Sorry to hear about that... have you found a better doc yet?

[jimi51]

Hi,
Yes, I am at an eye clinic under my insurance, they see me quite often as I have had PVD's as a result of the suction ring and I have occasional flashes and floaters so they check me for retinal detachments. They keep me in my plugs and generally treat me well. I also see an resident at an optometrey school who is showing an interest in my case as they say they are seeing more and more LASIK issues.

[patientpatrick]

Hi,
Yes, I am at an eye clinic under my insurance, they see me quite often as I have had PVD's as a result of the suction ring and I have occasional flashes and floaters so they check me for retinal detachments. They keep me in my plugs and generally treat me well. I also see an resident at an optometrey school who is showing an interest in my case as they say they are seeing more and more LASIK issues.

Hey Jim,

has the optometry school studies shown anything particualriy promising for you?

[Fitch]

Hello to all. I was able to speed up my nerve regeneration using 50 percent blood serum drops mixed with saline solution in my scleral lenses. I started at 1 year post lasik and after using them for only 2 months i noticed a huge difference in comfort and decrease in pain. Also my nerve regeneration speedup was confirmed by confocal microscopay by my doctor before and after using serum tears. I got my sclerals from Dr. Greg Gemoules and i am very happy with the custom fit he gave me....in my opinion he is the one to see for sclerals anywhere in the world. Further progress has been made since i added 1 percent lacosamide eye drops (1 drop lacosamide with saline in my sclerals) Both are available at leiters compounding pharmacy in san jose, ca with prescription from your doctor. I have suffered dry eye and corneal neuralgia since having lasik 1 year ago and i have had considerable improvement with my dry eye and most importantly the pain level since using sclerals with blood serum drops and 1 percent lacosamide drops. Restasis did nothing for me except burn and cause more pain so i wasnt one of the lucky ones who respond to restasis. Hope you find relief and the sooner you start treating the better. Unfortunately i did not get proper treatment till 1 year post lasik and that was not from my doctor but thru my own research on this great forum here at dry eye zone and google. Being your own patient advocate is the best way to go as lasik doctors will dismiss u since we are in the minority apparently of the great Lasik miracle procedure lol Hope this helps anyone suffering

[patientpatrick]

Hi Fitch do you have any other dry eye issues like mgd or blepharitis? Or is it strictly a nerve issue?

P

[Fitch]

Hi patientpatrick. In response to your question i have not been diagnosed with mgd, blepharitis, or aqueous tear deficiency fortunately. I did buy and use the Blephasteam device and it seems to help my eyes feel better and more relaxed. I feel it helps even though i dont have blepharitis. So yes strictly nerves as far as i know. Good wishes for healing to everyone out there and i continue to improve slowly each day but that sure beats debilitating as time goes on so i will take it

[patientpatrick]

Hey Fitch did you get a confocal before lasik to check your baseline?

I ask because there is a center here in SoCal that offers it but was told that getting one would be pointless since there is no measurement of my baseline.

[Ccoughlin]

Fitch,
I suspect that I have the same situation as you. I've been told that my eyes look perfect, just a little clogged,mso I basically have nerve pain 16 months out from Lasik right now. I started serum drops 2 days go, and am considering scleral lenses as well. If I tried lacosamide drops, would I get those from my regular general dr., or my eye doctor?

I have to decide a path right now, because Dr. latkany thinks I have mild ocular rosacea and should get off of all drops, pretty much everything....and I wonder if I should do serum drops, lacosamide, and scleral lenses....what do you think? I have done more OTC drops lately, and I swear I think my eyes hurt more. I should probably just shield them, and see if I can go off everything.....

One more thing, I can get by wearing acuvue moist lenses for part of every day. Is this OK, or would sclerals somehow help me more?

[Fitch]

patientpatrick i did the confocal only after lasik. A baseline was not necessary for me because it was obvious from the confocal that my bad eye had frayed looking nerves while my good eye had nice normal looking nerves that were not all branched out and split. Regardless they should not need a baseline to tell if you have normal nerve regrowth or if they have grown back abnormally. I would insist on the confocal or get another doctor. Ccoughlin you get the lacosamide prescription thru your opthamologist. I believe that lacosamide drops and blood serum drops offer benefit no matter what but the benefits are greatly amplified when used in conjunction with sclerals because with sclerals they sit on your eye all day long with the saline solution and do not drain away out of your eyes. As i have written before i got my custom fit sclerals from Dr. gemoules in dallas and love them and i would highly recommend him if getting sclerals but any sclerals would offer the benefits of the drops and you use less of the drops using sclerals rather than if you are just putting them in your eyes without sclerals like regular eye drops. I believe that sclerals are the gold standard but if you are okay with the acuvues right now you could stick with them but sclerals will give you more benefit and quicker healing just because they keep the moisture on your eyes as long as you wear them with or without serum and/or lacosamide. Happy healing and hope your having a great eye day

[Clair28]

Hopeful2 Fitch jimi51 SAAG Ccoughlin How are you guys doing now?? I know its been a few years so just wanted to see if any of you still are on here and if youve totally healed or healed greatly. It will be 1 year next month since my lasik procedure. have severe dry eye. was diagosed with MGD. But ive had lipiflow and IPL with no success. so one of my doctors thinks it must be the severed nerves that are playing a bigger role. Ive been on Autologous serum drops for about 2 months now and they help a little but not really. I am considering Prokera next. How did you Fitch find a doctor with a confocal microscope? It seems most dont have one. Thanks guys

[Guest]

Clair28 The Boston Foundation for Sight has confocal microscopes. I'm sure there are other places one could go too, but BFS is where I went a few years ago. Don't get too hung up on accessing one though - while it can tell you if your nerves appear to have grown back and re-enervated the cornea, it can't tell you if the re-grown nerves are functioning properly.

So there's the following possible results:
1. If nerves regrew properly and appear normal - good news in a way, but you still have no clue if they're working right (they don't have the technology to test their function) - in my case (per confocal microscopy results) the nerves re-enervated the cornea properly, so the assumption is those nerves are probably NOT working properly because that's the only reasonable explanation for the severity of my symptoms.
2. If nerves didn't grow back at all - then you know that's part of your problem
3. If nerves grew back wrong, or only partially grew back - again, this only tells you your nerves are part of the problem

Notice that in all 3 scenarios you'll still have to at least consider treatments that may alleviate corneal nerve pain, and decide if the risks of them are worth it... if you try them, you'll still have to figure out if they are helping etc.

re: How am I doing now?

Much better since moving to a tropical, warm and humid climate - the sweet spot for me is temps of 25C [77F] to 30C [86F], and humidity of 60% or higher, preferably 70%+.

Well, I technically didn't move... I'm more of a perpetual traveler who works online now therefore can be anywhere in the world as long as I have internet access. Anyhow, the long-term humidity has helped me a ton. The trick is to avoid too much breeze, so wear moisture chamber glasses... acclimate your body to the heat so you don't need air-conditioning. Anyhow, I know this lifestyle change is drastic - but I had to reinvent myself completely and come up with a new way to earn a living since my old job would not enable me to move somewhere humid enough. However, was well worth it since it's dramatically improved my quality of life.

re: "Ive been on Autologous serum drops for about 2 months now and they help a little but not really"

Then as long as you're tolerating them well, in my opinion, worth sticking with - if your eyes are bad, you need every little bit of help you can get. Meanwhile, keep trying other things... even if you find only a small effect, a lot of small effects from different treatments can add up to something significantly noticeable over the long term.

Last, but not least... don't let the fact that I'm not really cured/fully healed depress you - with time, it's possible to improve one's ways of dealing with the situation, improve significantly (sure, it's not cured, but if it's better than before that's better than nothing!), and come up with ways of arranging your life to make it good again despite the eye issues. Whatever you're going through now will not be permanent... eventually you'll either heal, or figure out the ideal way to minimize your symptoms so you can live your life and enjoy it.

And here's a great read that I've always found to be superb protection from falling into a dark pit of self-pity/depression: https://unstoppable.me/life-lessons/

That guy originally shared his story on another site several years ago, but that link is his latest.

(Note to all: I'm not on the forums often so it may take a few weeks for me to reply. But I've posted a gazillion things on here over the years so you may find what you want to know from me by doing a forum search)

[Neerav1989]

Fitch/Coughlin/Claire28,

I really need an update on how you guys are doing.

I am suffering from severe post Lasik corneal neuralgia for last 2 years and 4 months. none of the lubricating eye drops work for me as there is no dryness in my eyes. My TBUT has always been greater than 10 secs. Eyes look perfectly normal. long story short. My symptoms are entirely due to nerve regeneration issue. I am on 100% serum 4 times a day since last 5 months with no improvement. Have also tried plugs in the past and they have not helped at all. Doctors here don't believe sclerals will help as the problem is nerves sending wrong signals/abnormal sensations to brain. My doctor wants me to start on steroids and then continue low dose steroid for at least 2-3 years. Sounds crazy to me actually. Have also consulted neurologist and taken medicines like gabapentin but they dont help.

I had a lot of pain for 6-7 months post Lasik and lot of burning for next 1 year. What I experience these days are unbearable dryness/dysaesthesia sensation. It is actually a suicidal situation. Not a lot of pain/burning these days though. Has anyone experienced anything similar ? and does this ever get better ? Luckily I work in a govt job and they have given me comfort level, so I only have to make phone calls during a day (which is also difficult on many days as I cant even sit with the unbearable sensations). I am not even able to think about getting married in this condition. My situation is like I cannot do anything at all. I feel like just staying back home and do nothing. Any suggestions will be greatly appreciated. I live in India and things like Lacosamide are not available here.

Meanwhile I sent an email to Dr. Pedram Hamrah who is in boston. He replied to my email saying Transcaranial Magnetic Stimulation or Scrambler therapy can work as a treatment for Corneal Neuralgia. and they recently published a paper on it. Although I can't find the paper online.

Has anyone ever heard of Transcaranial Magnetic Stimulation or Scrambler therapy ? Doctors in India don't have an idea about it. I am willing to travel to US if there is a treatment available.

SAAG,
Its great to here that you have steadily improved. I just need to know for how long you used 100% serum and how many times per day ? I cant actually read so much and check your old post as my condition does not allow me. Meanwhile you seem to have done a lot of research your self. Do you think this condition can improve ? I mean if there is abnormal nerve regeneration, is it possible to reverse it and make nerves grow normally. Because I see on this site that Buntbean has been suffering from this for a very long time. Thanks

[Clair28]

SAAG Thank you for taking the time to reply. I try to be as positive as I can but the whole situation is just so unbelievably shitty it gets hard sometimes.
I have the same question as Neerav1989 . If the nerves have grown back but grown back wrong, can they be fixed to grow back normally?

Neerav1989 Im so sorry for the time youve had. Your a little ahead of me, I am one year post op in a few days actually. So your further along with the treatments and time than I am. But that being said, my doctor has put me on steriods last week. He wants me to taper them. So started with 4 drops a day for a week, then 3 drops a day for a week, down to none. And see what that does I guess. Im not really sure his intentions on that because it is dangerous to use steriods for a long period of time.
My doctor says the same thing, that my eyes arent physically that dry, and since ive gone through the ladder of dry eye treatments, that it must be the nerves. He said it can take people a few years for them to heal. I dont know how much I believe this, but I guess we'l see.
What he thinks will help most is for me to go on a nerve medication like I guess you tried. since you already tried gabapentin maybe you could try one of the others. He named a few: Lyrcia, amitryptyline, Naltrexone, notriptylline. So maybe look into those?
I am going to ask him about sclerals at my next appointment and let you know what he says. Cos I was also maybe considering that if all else fails.

[Neerav1989]

Clair28 I already consulted neurologist as well as pain specialist and taken medicines like gabapentine, amitryptiline, nortryptiline and oxcarbazepine. But they didn't help at all. Dr Perry Rosenthal has mentioned in numerous articles that these medicines don't normally work. Partly because there is no blood supply in cornea. Only thing that will help patients like us is to use a low concentration aneasthetic inside Sclerals. Meanwhile are you seeing any improvement with steroids ? and not sure which country you are in but try to find something about Scrambler therapy and give us an update on whether it is relatively risk free.

Meanwhile the Pain specialist spoke to me about Radio frequency ablation and Diagnostic block to block the messages being received by the brain. but it is a very risky procedure and should be avoided at all cost.

[Clair28]

Neerav1989 Thats discouraging, that the pain meds don't normally work. It seemed like the steroids were helping at first, maybe like the first week. but not so much anymore. It seemed like they just kind of numbed down the symptoms a bit. I think they could help you a little. Its just dangerous to use them long term so.
I will ask my doctor about the therapy when I see him later this week. I am in the US. in Virginia.