IPL at Univ of MI - Ann Arbor Kellogg Eye Center

[edmunder]

Update after IPL #3.
I
Yesterday I had IPL #3 but before I was given an exam with dye to see how my eyes looked. Doctor said that there was a little staining a month ago, but now my eyes look great. Ive heard doctors tell me I dont have much staining, or sometimes even no staining, but then other times I heard I have a little. Now Im being told that I dont have any, so not sure what to believe.

What is my eye regiment:
Cyclosporine twice a day, warm compress twice a day, Ocusoft hypochloric acid twice a day after warm compress. Xiidra once a day (it burns too much at night). Lotemax gel steroids every other day. Blood serum drops 8+ times per day. I take gabepentin twice a day, 300mg after breakfast and dinner. 600mg total a day. Low dose.

The good:

My eyes feel a lot better. I need to mention that I still wear goggles 24/7 but my eyes feel pretty good compared to suicidal where I was before. So symptoms wise its much better. I have my appetite again after losing 25/30 lbs. I was not fat before, I had a four pack, so it was all muscle. All my clothes are loose, but now I eat 3-4 good meals a day again.

Clinical good:

TBUT from adding dye to the eye. Waiting a couple minutes and looking through the microscope. Not from Oculus or Lipiview.

Right eye, before IPL #1 TBUT was 3 secs. Now its at 10+ secs. Doctor checked twice and stopped counting at 10 secs.
Right eye oil went from motor oil/butter to clear everywhere. Almost all bottom glands are producing clear oil. Tops not as good.

Right eye, doctor said clinically it looks like a normal eye. Zero staining, all glands producing oil, clear and good volume.

Left eye before IPL #1 TBUT was 2/3secs. Now its 4/5 secs. So clearly not nearly as good. This eye still has pain while my right eye is pain free.
Left eye oil went from toothpaste "worst Ive ever seen from two doctors" to mostly thin oil. Some butter/motor oil near the temple. 20-25% of glands not working Ive been told from manual expression. But after IPL all glands produce, but only after hard squeeze. Doctor suggested that means there is hope for those glands, but if they wont express oil when I blink its not helping me, just a theoretical/possible improvement in the future if they start working again.


The bad:

I'm still in goggles, even with a lot of improvement. My left eye is still so tender and sensitive that its hard to enjoy the benefits of the right eye improvement. So my quality of life went from terrible to very bad. Which is a big improvement, but hardly makes me happy.

I still have a very low tear lake, which is annoying because when I had a Schrimer test it was very high. I forget exactly, But 17 right eye, 12 left eye. But I dont have many tears at all, and tear lake is so low.

The bad clinical:

My right eye is supposed to be normal, yet when I go out in public with 7eye moisture chamber they get a dry, burning feeling. Not like the left, but its still there.

Left eye is still painful and stabbing type pain. Not gritty like others with nerve pain but dull constant pain and stabbing pain sometimes. But again much better than before. Still in lab goggles all the time except for every other day I go to the store or something and put on moisture chambers for an hour.


Altogether I would strongly recommend IPL to people with thick oil in their eyes. I would go on Lotemax Gel every other day or once a day also to reduce inflammation. Get blood serum tears and use them 8 times a day. My eyes were terrible and have improved.

My doctor talked to me that I without a doubt suffer from some kind of corneal neuropathy because my right eye looks great and should not have any issues. If it does there is something going on with the nerves. The doctor told me that I will need sclerals unless some big change happens with my nerves and all the research/facebook group testimonials Ive seen say it takes a long time to heal nerves.



Because of Thanksgiving the doctors schedule is very busy. Also, she only does IPL wednesday afternoons even though there is a very high demand for them since she is the only person in this region who does it (I drive 4 hours in one direction). So my next IPL is 6 weeks away. It doesnt make any sense and I highly recommended other doctors in the region to get IPL because they would have a lot of customers, but none want to buy the IPL machine which costs about 65k USD.


I go to Dallas Sunday to see Dr. G for Laserfit sclerals. My tear film is much improved but I may need to get bottom and maybe also tops plugged to help with tear volume to help wear time and comfort.

Im very scared though, because obviously if custom made sclerals dont work Im not sure what I can do after that, other than more IPL, wait and hope.

[MGD1701]

But without objective data, hard to treat effectively/economically & monitor the progress.

To find a doctor who can perform all necessary tests correctly and
is able to interpret restuls/data is so hard to find.

Erosion is very painful/terrible - be careful and do the night protection.

Hope you will find more relief soon.

[edmunder]

Thanks for sharing good news.
How about Lipid layer thickness, osmolarity, MMP-9? tear meniscus heigh (water issue since you plan to put plugs?)?
TBUT can be affected by the enviormental factors - seems non-invasive TBUT is more objective, according to Dr Toyos.
so what are the diagnose you got from the doctors?

I live in a small town so I need to travel to different doctors often 2-4 hours away.

One doctor does IPL and checks my TBUT with the green dye and slit lamp.

Another does manual expression, lib debridement, gives me steroids prescription and we have a good relationship. But no technology.

Another does Lipiflow and has osmolarity, Oculus keratography, TBUT with camera and green dye, etc. But this doctor is helpless ither than telling to do lipiflow, warm compress and hypocholoric acid. Thats what he says to do. Which I already do.

So its quite difficult to see all these people. And routinely get all this info.

Since my father passed away in March I took over guardianship of my younger half brother so on top of all this I have to be responsible for a high school kid. Its a bit much.

[deep_dry_eye]

I should edit the above post.

My left eye is TBUT 3secs. Which is what it was before.

I will edit above post.

So my left eye is seemingly not inproving in TBUT even though there has been an oil increase.

Let's get thru a few more IPL treatments and re-evaluate . I hope to see you improve after each IPL treatment.

[MGD1701]

Thanks for sharing good news.
How about Lipid layer thickness, osmolarity, MMP-9? tear meniscus heigh (water issue since you plan to put plugs?)?
TBUT can be affected by the enviormental factors - seems non-invasive TBUT is more objective, according to Dr Toyos.
so what are the diagnose you got from the doctors?

[edmunder]

I should edit the above post.

My left eye is TBUT 3secs. Which is what it was before.

I will edit above post.

So my left eye is seemingly not inproving in TBUT even though there has been an oil increase.

[deep_dry_eye]

Had IPL #2 a couple weeks ago. Machine was turned up one more level. Quite painful in some areas. No after effects.

IPL #3 is coming up in a couple weeks.

First: im still in goggles 24/7.

Stopped doxycycline. Whatever it was supposed to be doing it wasnt doing it. Taking probiotics and juicing everyday.

I started on lotemax gel twice a day and using blood serum 8-12 times a day.

Got my pressures done a few times and they went down using lotemax gel. So im not a responder. I will continue to use for a couple months I believe. 1-2 times a day plus blood serum to help heal nerves and cornea.

Positives:

My right eye has clear oil on almost all glands. Medium to little better than medium oil volume. No staining. TBUT to 7+ secs. My problem was my left eye is bad so id always blink. Couldnt tell. But pain is almost to zero with right eye.

Left eye nasal glands 25% dropped out. 75% give off clear oil. But volume is low to medium low.

Middle of lower lid half are dropped out. Rest give off oil. Temple left eye still motor oil. Flows with hot compress but not otherwise. Very low volume.

I have also met a neurologist who prescribed gabapentin which gives pain relief without taking tramadol as i had been. Im starting slow.

Neurologist very helpful and actually concerned with helping me. Eye doctors i see essentially shrug and say you are doing everything medically available.

Not sure what to think and my local doctor who does manual expressions and the Univ of MI doctor both are confused about the difference in right/left eye.

My left eye is the one where all this started getting very dry and corneal erosions.

I actually had an eye injury about 5-6 years befire where a tiny piece of popcorn shell got into my eye and under my eyelid for a few days before it was found by a doctor and removed. But that was upper lid. All my staining is lower from 4-8pm on the cornea. Lower area.

I get IPL again in a couple weeks.

With gaba + goggles + steroids + sleeping 12 hours a day my personality has come back. Im getting a few things done each day.

I go to Dallas to see Dr G a week after IPL #3.

Local doctor is giving me referral to too eye surgeon in the region about punctul cauterizion.

Dr Hamrah at Harvard/Tufts that deals with corneal neuropathy has patients in lotemax gel every other day plus blood serum 25% for 12+ months. Hes the top worldwide expert on eye pain and ive discussed his protocol with my local doctor so im hoping to stay on steroids for a while at least a few more months.

the main issue is, what happens when i stop with steroids. Will all the glands become inflamed agsin and stop producing oil as before? Very scary.

Your TBUT is quite good, 7 secs, not normal but better than most MGD patients. I'm personally 3-4 secs, so 1/2 of yours

The clear oil is a (very) good sign as well.

At this point, I think this is more a nerve issue than just MGD. I recommend you to continue serum, and give Prokera a try to heal the nerves. You can also consider upping your serum to 60% or even 100%. Find out if plasma rich platelets is available in your area as well, I heard that is much more effective than serum (more concentrated).

Lower staining is quite common. Make sure you do blinking exercises A LOT.

What is your frequency of IPL, I recommend you continue it. Try and get the uppers done as well. The protocol I'm switching over to is going to be uppers+lowers every 3wks x4 sessions.

Personally, I'm still skeptical about steriods, but Lotemax is relatively safe. Just make sure you check your eye pressure frequently. Has the Restasis+Xiidra kicked in yet for you? You should also give oral azithromycin a try, try it for a z-pack or 2 wk period.

[edmunder]

Had IPL #2 a couple weeks ago. Machine was turned up one more level. Quite painful in some areas. No after effects.

IPL #3 is coming up in a couple weeks.

First: im still in goggles 24/7.

Stopped doxycycline. Whatever it was supposed to be doing it wasnt doing it. Taking probiotics and juicing everyday.

I started on lotemax gel twice a day and using blood serum 8-12 times a day.

Got my pressures done a few times and they went down using lotemax gel. So im not a responder. I will continue to use for a couple months I believe. 1-2 times a day plus blood serum to help heal nerves and cornea.

Positives:

My right eye has clear oil on almost all glands. Medium to little better than medium oil volume. No staining. TBUT to 7+ secs. My problem was my left eye is bad so id always blink. Couldnt tell. But pain is almost to zero with right eye.

EDIT —- Left eye TBUT is lower at 3 secs which has my doctor a bit confused. Left eye nasal glands 25% dropped out. 75% give off clear oil. But volume is low to medium low.

Left eye Middle of lower lid half are dropped out. Rest give off oil. Temple left eye still motor oil. Flows with hot compress but not otherwise. Very low volume.

So left eye has much less oil overall.

I have also met a neurologist who prescribed gabapentin which gives pain relief without taking tramadol as i had been. Im starting slow.

Neurologist very helpful and actually concerned with helping me. Eye doctors i see essentially shrug and say you are doing everything medically available.

Not sure what to think and my local doctor who does manual expressions and the Univ of MI doctor both are confused about the difference in right/left eye.

My left eye is the one where all this started getting very dry and corneal erosions.

I actually had an eye injury about 5-6 years befire where a tiny piece of popcorn shell got into my eye and under my eyelid for a few days before it was found by a doctor and removed. But that was upper lid. All my staining is lower from 4-8pm on the cornea. Lower area.

I get IPL again in a couple weeks.

With gaba + goggles + steroids + sleeping 12 hours a day my personality has come back. Im getting a few things done each day.

I go to Dallas to see Dr G a week after IPL #3.

Local doctor is giving me referral to too eye surgeon in the region about punctul cauterizion.

Dr Hamrah at Harvard/Tufts that deals with corneal neuropathy has patients in lotemax gel every other day plus blood serum 25% for 12+ months. Hes the top worldwide expert on eye pain and ive discussed his protocol with my local doctor so im hoping to stay on steroids for a while at least a few more months.

the main issue is, what happens when i stop with steroids. Will all the glands become inflamed agsin and stop producing oil as before? Very scary.

[MGD1701]

Just wonder if you expressed glands too hard and empty the reservoir as a result no much oil come up?
If we empty them, it may take a few hours to pump into glands??

I do notice if I massage too much, eyes get drier so now my new strategy is very gentle, short or forceful blinking.

[edmunder]

Update about two weeks after first IPL.

I was in pretty desperate pain so i got out my safety bottle of Alrex steroid. Its just a sample so not much. Used it the last couple days. Pain down to levels i can handle with handfuls of ibuprofen. I was right at the edge.

Pleasant side effect. My eyes lower glands started to express oil. I get up late but at sbout 10-11am i did a warm compress. Most lower glands expressed a good amount of oil. Then a few hours later pressed on eyelid and more oil csme out, but not much. In the late afternoon did a warm compress and couldn’t get barely any oil out.

1: inflammation is causing my eyes to not wirk well. I need to go on a round of steroids again.

2: before lipiflow and first IPL i was at essentially zero glands working. Now there are some working but not making much oil.

3: my eyes are in bad shape and very inflamed. Before i woke up without pain and it got worse. Now i wake up in pain. So i need something serious.

4: i have a manual expression friday the 14tg. Maybe another the 19th. IPL the 26th. Expression the 5th of October and the 10th. Then IPL the 17th.

I think i will try to be on steroids through that 4-5 weeks if possible. Low dose.

I was right at the edge pain wise and very inflamed eyes. Like i wanted to tear them out.

So im not taking no for an answer on friday.

[edmunder]

I wouldn't be too disheartened yet, in fact I am quite surprised that you felt better at all after your 1st treatment. It is encouraging that you were expressing good oil and that your eyes felt better. You appear to have pretty good gland structure. Remember that the doc said that if you felt good after the 1st treatment that you should make some real progress after 4-5 with thinning the oils. Fingers crossed for you.

I am still holding my own after the 4th treatment, not as good as after the 3rd though. I suspect that I will need at least a couple of more. I will see the doctor again in a month and we will take it from there. At the very least I intend to get manual expression done every month as long as I am in the country. I am looking forward to going to the tropics this year because I think with the humidity and my improved gland function that I will feel pretty decent.

Out of curiosity what was your average LLT when you started?

No one has Lipiview anywhere near me. 1.5 hours away has Oculus. My Tbut on my bad eye was 2.5 secs and i think it has worsened. Univ of Mi also only has Oculus.

[farmgirl]

I guess I should add that many people don't get any benefit from the first treatment but I felt great. The doctor had mentioned if I see improvement to be happy because that usually means after 4-5 treatments there can be some real progress with the thinning of the oil. I am praying that will be the case. But as you can see Im also looking into manual expression other times to try and express the bad oil as much as possible.

I wouldn't be too disheartened yet, in fact I am quite surprised that you felt better at all after your 1st treatment. It is encouraging that you were expressing good oil and that your eyes felt better. You appear to have pretty good gland structure. Remember that the doc said that if you felt good after the 1st treatment that you should make some real progress after 4-5 with thinning the oils. Fingers crossed for you.

I am still holding my own after the 4th treatment, not as good as after the 3rd though. I suspect that I will need at least a couple of more. I will see the doctor again in a month and we will take it from there. At the very least I intend to get manual expression done every month as long as I am in the country. I am looking forward to going to the tropics this year because I think with the humidity and my improved gland function that I will feel pretty decent.

Out of curiosity what was your average LLT when you started?

Hokucat i ordered some from walmart. I should get it on Wednesday.

There is no way i would make it 3 years with this level of discomfort.

So strange that just a few months ago i was more or less normal, then a few more glands must have blocked up causing a terrible spiral of inflammation and blockage.

I told my family I would try for two years, if I didn’t see a change, well...

Sorry man, I genuinely hope you can get to the cause. I mean, my 7th doctor told me I slept eyes open, my 8th doctor told me why. Then when I researched sleep apnea, I read that the lack of oxygen when you sleep released mmp7 and MMP9 inflammatory markers. That’s what attacks the collagen in your lids and makes them elastic.

My point of that story is, I believe there’s something else going on. I have no clue what, but I believe you will find it if you just keep pressing on. It makes no sense how someone could just wake up like this and it just be a couple blocked glands. Maybe it is, I’m not a doctor...I hope it is and unblocking them fixes this. However, I can’t help but think something changed internally. I felt this way about pythonfinder...he was a great member. Really enjoyed talking with him. He had zero glands...none. He believes it’s computer induced, I believe that’s possible...but his age and severity made no sense. I don’t know anything man, all I want is for everyone to keep fighting for an answer. Because I believe there is one...not a cure, but an answer that will relieve some suffering.

hope you feel better next week. You need something shoot me a message, I’ll do my best to help.

[edmunder]

Hokucat i ordered some from walmart. I should get it on Wednesday.

There is no way i would make it 3 years with this level of discomfort.

So strange that just a few months ago i was more or less normal, then a few more glands must have blocked up causing a terrible spiral of inflammation and blockage.

[Hokucat]

edmunder , sorry you have so much discomfort again. When I had zero tear film for several years, my eyes felt just like how you describe yours now. I don’t know if you ever tried the Genteal Severe Eye Gel, but it is much more moist than ointment and stays on the eyes much longer than drops. That little tube literally saved my life during those years because the gel consistently gave my bone dry eyes a smooth, moist, and soothing feeling that nothing else could.

https://dryeyeshop.com/collections/g...ts/genteal-gel