Pretty crazy idea. Eyeball removal

[Meibum Ian]

It took me 6 doctors before I found one that realized I was sleeping eyes open. As soon as I remedied that I got even better.

Sorry to take this off-topic. Just wondering how you dealt with this? It's almost certainly a factor in my case but is not really being addressed.

[deep_dry_eye]

Dowork123 I actually go a bit hotter such as 55C and put the bruder mask on. I hold it on my face as i lay down to nske sure the heat is going directly into my eyes. Especially the lower lid area.

I go about 5+ minutes then reheat to that temperature. Ive gone as high as 60C and it doesnt seem to hurt. It ususlly feels very good. But i cant seem to express much out even after 20-30 minutes of heat at 55C。

I wonder how hard are you pressing? I press very hard and im eorried im putting too much pressure on my eyebsll sometimes.

You don't want to go too high or too much pressure. 60C is really high... you don't want to damage your corneas. Try compressing it a bit longer than 5 mins, try longer duration at say 15mins at 45C.

I personally dont apply finger pressure after warm compress anymore, I just do a lot of blinking exercises which I find to be very effective. However, I don't have any scar tissues.

Dowork123 I actually go a bit hotter such as 55C and put the bruder mask on. I hold it on my face as i lay down to nske sure the heat is going directly into my eyes. Especially the lower lid area.

I go about 5+ minutes then reheat to that temperature. Ive gone as high as 60C and it doesnt seem to hurt. It ususlly feels very good. But i cant seem to express much out even after 20-30 minutes of heat at 55C。

I wonder how hard are you pressing? I press very hard and im eorried im putting too much pressure on my eyebsll sometimes.

So this is interesting, you're saying the meibum will not melt at 15 mins of 50+ Celsius? I'm only making an assumption because I'm not a doctor. So my left lid has a lot of scar tissue and doesn't express like the right lid. I have to push 2-3 times harder on the left eye to get expression. My doc said that's scar tissue and we should probe. But he also said, if you're doing fine, let's not do anything and save that for when things get worse. So you may have a ton of scar tissue that's not allowing the gland to express properly. Again, just assuming based on my experiences.

If youre afraid about the pressure, just try to put all pressure on the sclera not the cornea. So if you do the upper lid, look down and vice Versa for the lower lid.

Now, I will say this with certainty...with you describing the pain you have, going that hot with the compress is going to make inflammation way worse. You need the compress but if try to stay around 45-47c and do that 4 times a day at least 15 minutes. Have you read dr latkanys home spa treatment? It's a systematic way of cleaning the lids and the eye. the idea is this...

heat the meibum with compress

express glands, hold lids taut and use a q tip to roll from the bottom of the gland to the lid margins. I also massage very lightly after this

Then, saline rinse to remove the bacteria and poor quality meibum

then avenova to clean the bacteria off the lids and margins

I personally then put serum in each eye and boom, done.

But i I feel like just doing the compress and leaving that garbage oil on the eye is just causing more inflammation. I was gland to find this regimen.

[edmunder]

Dowork123 I actually go a bit hotter such as 55C and put the bruder mask on. I hold it on my face as i lay down to nske sure the heat is going directly into my eyes. Especially the lower lid area.

I go about 5+ minutes then reheat to that temperature. Ive gone as high as 60C and it doesnt seem to hurt. It ususlly feels very good. But i cant seem to express much out even after 20-30 minutes of heat at 55C。

I wonder how hard are you pressing? I press very hard and im eorried im putting too much pressure on my eyebsll sometimes.

[hopeful_hiker]

edmunder have you looked into serum drops? Could you have corneal neuropathy? What kind of pain do you feel?

People with Lasik and/or neuropathic pain had success with it such as tommyboy (his last update). I am using serum now, it is good whether or not you have corneal neuropathy.

Check out the report on pain management (there are several different complimentary approaches):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5607443/

Things to get better though. I just hope all of us find the best solutions for our situations sooner than later.

[deep_dry_eye]

If you have toothpaste, i highly recommend you to get on AzaSite and IPL , both of which is known to turn toothpaste to liquid. Get on LipiFlow as well to clear obstructions. Also get on Xiidra and Restasis both BID to reduce inflammation and for long-term control.

to make your symptoms feel better, consider autologous and prokera both of which can heal ur nerves / cornea.

My problem with warm compress and expression is one eye the oil isnt liquid. I had a manusl expression Wednesday and the doctor said it came out and stood up like toothpaste.

Im considering getting my own tool to manually express the glands myself every few days just to keep them pumping.

Will send a pm

How hot do you get the compress? Do you use a thermometer to temp it? So I have a microwaveable bruder compress. The left eye pad is always way cooler than the right. So your microwave may be heating irregularly like mine, or it may not be enough heat. So my time is 21 seconds, that gets the left eye about 45-47C and the right eye to about 50C...once the left side is 45C I lay it on my left eye, and keep the right side held in my hand til it cools, then I lay the right one on. When I go to reheat, it requires less time 10 seconds and it heats more evenly. I do that 3 times for a total of 15 minutes. It took me a long time to change the quality of my oil...I'd say 2-3 months of compress 3-4 times per day. My oil went from toothpaste, to foamy, to almost no foam. That took 4-5 months for that whole process. What really sucks is this takes so long to fix and you have to be diligent and do the techniques properly. It's a big life adjustment. Talk to you soon!

[edmunder]

My problem with warm compress and expression is one eye the oil isnt liquid. I had a manusl expression Wednesday and the doctor said it came out and stood up like toothpaste.

Im considering getting my own tool to manually express the glands myself every few days just to keep them pumping.

Will send a pm

Dowork123 Have you done IPL in Chicago? On Monday im going to call around to the few doctors i see online that have dry eye specialists in the chicago area. Im hoping i can set up a consultation plus treatment. Its too long to go just to see them. Can you recommend anyone?

Do you know anyone in Chicago that does the probing plus steroid injections. That sounds promising.

And thank you for the positive ideas. Its hard to stay positive. I also hope we all can find a cure in the future.

Ok, I have not been to UIC (university of Illinois Chicago) but I have an appt on the 25th because they have all the latest imaging technology and they go deep to find your problem...they culture your tears, very interested in this. I just want more information. They do prp drops and serum drops there...you can get those same day for sure. But again, I haven't been there yet, so I'm only going off of what I've read about them. When will you be out here? Also, is suggest you see multiple people...my doctor is in Indiana just over the border. So if you're coming from Michigan, it's actually closer than Chicago. I would see him and at least two other doctors if you can do you can get their opinions. For example, my dr does not like lipiflow, he says, if you're doing your compress and expression properly, it's not necessary. He doesn't offer IPL either, he does probing. In his mind, he wants to aggressively attack the disease, so he would give you doxy, because in his words, it's the only way to fight the disease from the inside. If you have scar tissue, the probing will fix that. Again, in his mind, IPL isn't effective especially based on cost. But that's his opinion, that's why it's always best to get another doctors opinion as well. If you want my Drs info I'll shoot you a pm. So my dr is a corneal and external disease specialist...I think it's important you see a corneal specialist especially with your ocular surface pain. Even in my opinion, I think based on your pain level, you need an aggressive treatment.

[edmunder]

Dowork123 Have you done IPL in Chicago? On Monday im going to call around to the few doctors i see online that have dry eye specialists in the chicago area. Im hoping i can set up a consultation plus treatment. Its too long to go just to see them. Can you recommend anyone?

Do you know anyone in Chicago that does the probing plus steroid injections. That sounds promising.

And thank you for the positive ideas. Its hard to stay positive. I also hope we all can find a cure in the future.

I agree i could see improvement after i do IPL and lipiflow many times. The terror is that i wont. Or the pain i will live with until then.

I feel like the pain is not in my eyelids its in my cornea where all the nerves are. There are so many nerves on the eyeball. Way more than other areas in the body.

Yes i broke down after he told me he hadnt heard anyone got better and i havent recovered yet.

When you're really dry, you get A LOT of inflammation. My eyes felt like someone stuck two hot pokers in them by the bridge of the nose. And the rough feeling behind my upper lids. It was so bad...once I took a light course of steroids, stayed on my compress, lid hygiene and serum tears, things got better. A lot better. Once I got the sleep thing under control, I feel somewhat normal. I can function pretty well. I'm going to Vegas in a few days to meet a childhood friend. I NEVER thought that would be possible 4 months ago. Get on your treatment, get the klarity c drops, and stay on it...keep your eyes moist all the time, I recommend serum drops. For me it's simple, lubricate or be in pain or worse, have a corneal erosion at night. Have you have one of those yet? I sure hope not.

I know youre scared, this is forever, you can't cure it....BUT you can feel way better than you feel now, I guarantee it. I fear how I will feel in 10 years, it sucks, I'm feeling pretty positive today I must say. Because I genuinely believe one day they may be able to apply medication directly into the glands. They actually already do that with probing and corticosteroid. Or stem cells to get the glands living and operating again. I have basement membrane dystrophy too, which complicates my eye pain. It's just a matter of time before they figure out a way to help us. The question is will it happen in our lifetime? At the very least I hope I can keep my daughter from having this. I mean the fact of the matter is there will be more and more people with dry eye because of computer use, refractive surgery, MGD, etc. that's a good thing in the sense that the more proline that suffer, the more likely people will pour money into research. Dr Cremers has children 7-11 coming in with ZERO glands left. This was from iPad use, one girl was using the iPad to learn to play the piano. That's horrible...and sadly promising for dry eye research. Poor kids man, I couldn't imagine.

[optimusdryeyes]

I agree i could see improvement after i do IPL and lipiflow many times. The terror is that i wont. Or the pain i will live with until then.

I feel like the pain is not in my eyelids its in my cornea where all the nerves are. There are so many nerves on the eyeball. Way more than other areas in the body.

Yes i broke down after he told me he hadnt heard anyone got better and i havent recovered yet.

what do you have that causes such pain?do you have corneal involvement? If I am you and I hear that from a doctor, I would ditch him right away. Whatever the situation, there should be stuff to try. Lots of doctors in the US are crap and like a friend of mine used to say: “What do you call the person who graduated bottom of his class in med school?” Doctor. You just need to keep looking to find a better one.

[edmunder]

Sadly im in ludington MI so a drive to Ann Arbor to start seeing the specialist at the kellogg eye center at Univ of MI will take 4 hours each way.

About the same to Chicago.

Thats also part of the battle. Long car rides and driving is hard.

[edmunder]

I agree i could see improvement after i do IPL and lipiflow many times. The terror is that i wont. Or the pain i will live with until then.

I feel like the pain is not in my eyelids its in my cornea where all the nerves are. There are so many nerves on the eyeball. Way more than other areas in the body.

Yes i broke down after he told me he hadnt heard anyone got better and i havent recovered yet.

Im pretty depressed recently since im in a waiting game until i can see someone about IPL and hope gor improvement. My local doctors bedside manner was terrifying. His take was he had never heard of anyone getting better and he was sorry he didnt notice the issue earlier.

Has anyone ever looked into eye removal to stop the pain. Obviously very extreme but between intense, body shaking pain all day and no pain but blind i would take blindness. Not the worst thing. Many blind people live rich lives.

Has anyone heard of this being being possible? I know a bit crazy but preferable to other darker options right ?

I've gone here before, let me talk to you about this the way my psychiatrist spoke to me about it. He said listen, you have lid disease, removing they eye won't stop the inflammation and pain in the lids. Also, you could end up with phantom limb pain...just because you remove the limb, doesn't mean you remove the pain.

Let me also say, it's just sickening when a doctor says, you're going to have this forever. I remember the moment the doctor said that to me. I literally died inside thinking my life would be like this forever. The thing is, I'm way better now. I have bad days and it's not perfect, there are days I still want to die because of how unfair I feel this is. However, I want you to know I went from a pain level of, just rip my eyes out please to, that sucks a little, but I'll get through it. Again, it's not perfect everyday, it's never going to be perfect again, but I'm better. I know you can get better. It took me 6 doctors before I found one that realized I was sleeping eyes open. As soon as I remedied that I got even better. See more doctors, look for good healthcare...I think you said you'll be near Michigan right? I'm outside of Chicago if you want help finding a doc because that guys response was borderline negligent.