IPL at Univ of MI - Ann Arbor Kellogg Eye Center

[hopeful_hiker]

edmunder I am so glad that scleral lenses help you. I think perhaps at this point you can maintain your glands as healthy as you can through compresses/ipl/Lipiflow (since their effects don’t last forever) and enjoy the comfort of scleral lenses. Maybe eventually you will find something good for your glands. Doxy maybe?

Either way, mediocre signs but low discomfort is better then the other way around in my opinion.

[edmunder]

Im not as hopeful to be honest. After studying everything available and talking/listening to many hundreds of people discuss what worked for them... Ive tried everything. There isnt any treatment or pill I havent tried except Prokera and that is not my issue. Ive read the literature. Im at the pray for medical advancement in the future phase.

Ive also done blood serum, azithromycin, doxycycline, 30+ kinds of vitamins/supplements.

Maybe I have a rare autoimmune disorder. But then what? There are no cures for them.

So im very happy about the lenses but the thought that i havent made any headway with every available mgd treatment has me about as dark as it gets.

I’m sorry the steroids were the only thing working. I am hopeful that because your issue is related to inflammation, and you respond to steroids, if you get a diagnosis, I think you can get back to a more normal life. My hope is that Jain can figure it out, but I don’t doubt the guy in the slightest. Which is extremely rare for me.

Super glad the lenses worked out, you needed a win. Sounds like you have a tool to help you function better, at least for now. Can’t wait to see what happens at you initial visit. You’ll get A LOT of information that day. Good luck and glad to hear youre doing better. You literally sound better based on the writing in your post.

[edmunder]

Well extremely bad news and very good news.

Bad news: I stopped steroids and my oil completely thickened. If i press very hard i get a little. After a warm compress it looks good. Otherwise nothing. I had a manual expression and it was lots of thick oil and a little thin oil.

That means the IPL wasnt doing anything for me. It was all just the lotemax gel steroids.

So Im back at step 1. After months of trting things, nothing works except steroid drops. Lipiflow, IPL, lid scrubs, hypocholoric acid, tea tree oil. Lid debridement, manual expression.

End result is zero progress with the MGD. Im going to get a counselor asap.

Not sure what to do now. Continue to ise lotemax every other day and get oil or stop and let it all thicken into toothpaste again?

I used the steriod drops for 3 weeks 2-3 times a day. 2 weeks 1 time a day. 2 weeks every other day. Then 2 weeks every 3rd day. Now i tried every 4th day. It stopped working.


Good news: I went to Dallas for the Dr G laserfit sclerals and they are amaxing. I wore them 10+ hours today. Great day. But i just looked in the 20x mirror to get oil. Nothing.

But even with zero oil comfortable all day.

Im pretty depressed about the mgd though.

I think I will try to see Jain in Chicago at UIC.

[MGD1701]

thanks. you meant the dr who did IPL for you never tested osmoarlity?
that is strange, since it is not an expensive tool.

[edmunder]

edmunder
low ear volume
if you have concern, perhaps get Sjo blood test done, it can detect SS 4.5-6 years earlier than tradiional blood test.

oil quality
Are uppers and lowers different, not all clear? If so, what dr comment on this?

did your osmoloarity improved too? just curious?

I had many autoimmune blood tests. All negative. Thyroid blood tests all negative.

Oil quality: lowers better than uppers. Right eye lowers all thin oil with good volume. Left eye lowers 20% dont function. Most have thin oil but medium volume. Not great but improved.

I havent had osmolarity tested since July. Then my right eye was 295. Left eye was 308 i think.

only one doctor nearby does it and I dont feel the need to drive two hours there and back for the info.

[MGD1701]

edmunder
low ear volume
if you have concern, perhaps get Sjo blood test done, it can detect SS 4.5-6 years earlier than tradiional blood test.

oil quality
Are uppers and lowers different, not all clear? If so, what dr comment on this?

did your osmoloarity improved too? just curious?

All very well to say that about sclerals but most people I know with bad neuropathy are a bit better after a year on the steriod and serum protocol, not cured by any means. Why live in extreme pain if sclerals can take it away and keep your corneas super healthy? You can still add serum in the morning and at night.
Also talked to someone at Bascom Palmer today and they told me neuropathy people do better on higher serum whereas he recommends only lower concentrations...it's so hard when everyone tells you different stuff.

I’m doing better taking 100% serum. Every time I increase the concentration, I feel better. So anecdotally I would agree with that first statement. All that being said, I feel that healing the nerves is super important for the integrity of the entire system. What’s two years when you probably have at least 20-30 years left? At least that’s what I’m telling myself because I have to deal with the shit now. I want to give myself the best possible chance to heal before I do anything else. Which is difficult when you’re in pain, but such is life.

Yes Hamrah at Harvard/Tufts recommends against sclerals. The issue I have is that he mainly deals with people who have “normal” eyes but who suffer from intense pain. My eyes had/have bad mgd and low tear lake. If I had clinically perfect eyes and my eyes hurt I would follow that protocol. My issue is long term MGD and dry eye causing nerve issues. I need to cover my cornea long term and that should help heal the surface.

For me my eyes feel perfect in the shower and when my goggles are very fogged up/high humidity. Sclerals will give me that. Liquid on the eye.

I don’t disagree I just feel like you should give those nerves a chance to regenerate before you toss scelarals on them long-term. But you got to do what makes you feel comfortable man.

All very well to say that about sclerals but most people I know with bad neuropathy are a bit better after a year on the steriod and serum protocol, not cured by any means. Why live in extreme pain if sclerals can take it away and keep your corneas super healthy? You can still add serum in the morning and at night.
Also talked to someone at Bascom Palmer today and they told me neuropathy people do better on higher serum whereas he recommends only lower concentrations...it's so hard when everyone tells you different stuff.

[ebi1368]

One of the top docs treating neuralgia sways his patients from getting sclerals because they block the serum from getting to the eye and healing the nerves.

What if I put a few drops of serum on Scleral lens. I have seen people in this forum doing that.

[ebi1368]

Yes Hamrah at Harvard/Tufts recommends against sclerals. The issue I have is that he mainly deals with people who have “normal” eyes but who suffer from intense pain. My eyes had/have bad mgd and low tear lake. If I had clinically perfect eyes and my eyes hurt I would follow that protocol. My issue is long term MGD and dry eye causing nerve issues. I need to cover my cornea long term and that should help heal the surface.

For me my eyes feel perfect in the shower and when my goggles are very fogged up/high humidity. Sclerals will give me that. Liquid on the eye.

I am pretty much the same as you. Obviously I have dry eye with my TBUT less than 4 sec. I am going to get Scleral anyway. Maybe wear it 3 -4 hours a day. I need that for vision mainly reading.

Have you tried plug before? My doc mentioned that to me. I heard it is good for short term but long term it is going to reduce schmire. I do not know if it is true.

[edmunder]

One of the top docs treating neuralgia sways his patients from getting sclerals because they block the serum from getting to the eye and healing the nerves.

Yes Hamrah at Harvard/Tufts recommends against sclerals. The issue I have is that he mainly deals with people who have “normal” eyes but who suffer from intense pain. My eyes had/have bad mgd and low tear lake. If I had clinically perfect eyes and my eyes hurt I would follow that protocol. My issue is long term MGD and dry eye causing nerve issues. I need to cover my cornea long term and that should help heal the surface.

For me my eyes feel perfect in the shower and when my goggles are very fogged up/high humidity. Sclerals will give me that. Liquid on the eye.

Thanks for sharing. I hope you keep improving. It is rough journey but I am sure you can get to the other side. T

I also had my 3 rd IPL yesterday. I did have some clinical improvement but I still have a lot of symptoms. I am also thinking about getting Scleral. I actually have an appointment with Embassy tomorrow to get USA visa. Not sure if I will be approved bc of my nationality.

One quick question, did your doctor said anything about effect of Scleral on nerve growth. Does it help the nerve or diminish its growth rate?

One of the top docs treating neuralgia sways his patients from getting sclerals because they block the serum from getting to the eye and healing the nerves.

[ebi1368]

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.

Thanks for sharing. I hope you keep improving. It is rough journey but I am sure you can get to the other side. T

I also had my 3 rd IPL yesterday. I did have some clinical improvement but I still have a lot of symptoms. I am also thinking about getting Scleral. I actually have an appointment with Embassy tomorrow to get USA visa. Not sure if I will be approved bc of my nationality.

One quick question, did your doctor said anything about effect of Scleral on nerve growth. Does it help the nerve or diminish its growth rate?