LipiFlow device - what the????

[Betsy]

I don;t know, a patient said that it can somehow push the clogging even farther down. Not sure how. The optometrist said that it's normal to be worse the first week or two but I don't know why ? And yes, my right eye does feel worse. I don't know if irrigation is what I need. My pain started way before I had begun the night time ointments and I hadn't had plugs for a long time at that point. I am not sure what is best to try next.

[bcornel]

I haven't heard about LF causing oils blocking further in the gland. Since it liquifies the oils, I'm not sure that would be possible. I would hope the pumping action is designed to do the opposite. Why do you think this is a possibility?

I saw the posts about lacrimal irrigation. Interesting stuff, but it doesn't seem like there would be a point if you have plugs. I'm confused as well!

[Betsy]

Hi bdornel, so far no improvement with the right eye that had the LF. Thank you very much for the positive words. Have you heard about the possibility of LF causing the oils to block farther in the gland at all? Versus blockage near the top I guess? Also, and this is another thread, a doctor mentioned lacrimal irrigation. I hadn't even heard of that and not sure if I need it. The more I learn the more I get confused.

I have not had improvement with the NAC which I was hoping to have. So I will get hyaluronic acid next I guess.

Big bummer about Dr. F not doing it anymore, I've heard great things about him. Apparently now he focuses mostly on surgery I found out. Now I'd have to travel to So Cal a bunch of times. I love So Cal a lot, too bad I don't know people there anymore to visit so I can combine the trip. Then if the IPL fails, I don't feel so guilty for the airfare at least, and feel glad I got a much needed little vacation too.

[bcornel]

As far as I can see there's only one doctor doing IPL in the bay area (Sacramento). I called Dr Friedman's office and turns out he's no longer doing it. It's a pretty inconvenient treatment to have to fly somewhere for, since it sounds like it requires doing at least 4 treatments over 4 months.

Hope the Lipiflow ends up helping your eye!

[Betsy]

Hi Bcornel, thank you for the links. I am glad the doctors are considering the neuralgia because not that long ago many didn't know about it and rather than say they don't know what is causing all the pain but they believe the patient, they would say the patient was crazy because there were none or not enough clinical signs to point to that level of pain. I feel like with my low tbut and other scores that would likely be lower if I didn't use drops right before the procedure, then it's enough to reflect the pain level I have but an out of area doc also thinks I *may* have this cornea neuralgia.

Years ago I took LDN but didn't find relief. Though somehow over the years it became manageable and now i am struggling like crazy. So I want to get on it again, but can't get anyone to RX it for me. Such a safe drug and rather than read Dr. Rosenthals study I gave them, they ignore it. It's awful.

I am doing the goggle test this weekend and it will hopefully shed light on if I have this neuralgia or not but I am pretty sure I do to some degree because I made my room super humid and still didn't feel better. I had to turn off my humidifier so as to not cause mold as there was so much wetness on the wall. I want to test it by going to the steam room at the gym but almost fear doing it for finding out that it's not enough.

Even though serum drops didn't work for me, so far taking 2 months, apparently it does for some, so I am glad you will try something new that may help. I want to try IPL too. You are lucky in that you are near doctors that do IPL for dry eyes in your neck of the woods. If I did it, I have to travel, the bay would be the closest, though those trained by Toyos seem to be in Southern Cal mostly.

I forgot to answer your question, I thought lipiflow worked yesterday, but a few days post the procedure I don't feel it did. I so wish it did to justify the cost. Though if it helped, I wouldn't have thought twice about the cost frankly. Now I still hurt and feel guilty for doing it when all said NO. Maybe I will get benefit in a week or two, but doubt it and I think IPL is my next bet as well. Someone on here got worse with Lipiflow and then someone else scared me that the oils get pushed even further back then always come out, I hope that's not true!

I also wish I could find a place to get preservative free NAC drops, and preservative free Zithromax. Maybe preservative free hyalauralic acid too...

[bcornel]

Thanks for the welcome!

I had the lipiflow done at the berkeley eye center, where my doctor was Dr. Satjawatcharaphong. I plan on posting about my story in more detail in the introduction section, but I've had the condition for a little over a year. Moderate burning/soreness/aching that starts in the eyes but radiates to the brow and sinus areas. It started as computer vision syndrome at a data entry job but continued after I quit and now affects me away from computers. In addition to fish oil/AT's/lid hygiene I've tried restasis, lower plugs, topical steroids, azasite, azithromycin, doxycycline, minocycline, and most recently lipiflow. I've been diagnosed with moderate MGD and mild dry eye by some doctors, whereas others say I do not have dry eyes. The lipiflow doctor said I have mild evaporative dry eye which doesn't account for the severity of my symptoms.

My clinical signs have improved to the point where all the doctors I'm seeing now think I have corneal neuralgia and/or complex regional pain syndrome. The only remaining metric that points to MGD being a cause of the pain is the low lipid layer. But the doc didn't seem that concerned by it, just confused (since I had no partial blinks either). Like many of us, I'm really confused at this point! I'm getting fitted for sclerals in a couple weeks, and the only other two treatments I'm considering are serum drops and IPL. Oh and I'm also experimenting with different systemic pain meds - anticonvulsants and antidepressants. So much trial and error.

I know that Leiter's Pharmacy in San Jose, CA compounds the high dose cyclosporine drops. They are in a different vehicle than restasis I think.

There was a study that showed some people got relief with higher frequency restasis, who were not helped by twice a day:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2924632/

Here's a success story by someone that was helped by high concentration, but not high frequency:
http://www.dryeyezone.com/talk/forum...-not-frequency

Definitely talk with your doctor about it first. Have you found an ophthalmologist you like yet? I keep thinking how important it is to find a doctor that's interested with this condition.

[Betsy]

Hi bcornel, I saw this is your first post and wanted to say welcome to this board. I know it's not a place anyone wants to be, but I hope something here leads you to relief.

Yes it makes sense the relations between low aqueous level can affect MGD, though not sure about the reverse. I would think making few tears could feel the same as mgd because if you don't have enough tears, then in between tears you are not making, you feel the same as people whose tears evaporate quick. I guess it makes sense then how plugs and cautery can work for people with MGD not only aqueous tear def. You are less prone to evaporation if the few you make are forced to stay on the eye longer right?

Also, no one told me to not use tears before the procedure, in fact, I was told it didn't matter when I asked. And now I feel like my scores are higher than they should be :/

I could ask at follow up but worry if it wasn't done then, then she may not know how now, it's good to know what you told me. May I ask who your doctor is? What is your story if I may ask as far as what exactly you are dealing with and what you have tried?

I have not tried high dose cyclosporine drops. Are they the same as restasis but higher dose? Can I take restasis more often to get relief or no? I haven't had success with restasis. In fact, one doctor even told me to stop taking them because she said the burning can lead to more inflammation? They don't burn each time, but sometimes.

Thank you for all this useful info, I really appreciate it! Often I post on here and I don't get responses which can be disappointing. But I realize a lot are struggling and can't always respond or necessarily know how to. And others maybe are doing well over time and don't come here as often precisely because they are doing so well and now enjoying life, or perhaps aren't doing well but don't come here anymore because maybe they got all they could.

[bcornel]

It's been a couple days since the treatment. How're you feeling so far?

That is strange about the mismatch between the lipid layer thickness and tbut in the left eye. I guess having a low aqueous layer could affect the tbut though. I recently had a lipiflow follow-up and I actually had the opposite results - a mostly high tbut with good oil and functional glands, but very low (44 and 36) lipid layer. Not sure how that works.

As for counting glands, my lipiflow doc used an applicator that mimics the pressure of blink to sample the glands in the three parts of each lid. She did this before the procedure, and at the follow-up. I think the lowers and uppers can be pretty different, for instance my uppers are healthier than my lowers, where there is some atrophy. Maybe you could ask her about this if you have a follow-up.

I'm so sorry about what you're going through with the Sjogren's. Have you tried high dose cyclosporine drops? I remember reading some posts by forum members with Sjogren's that were helped by those, but not by restasis. And I've also seen some studies about it possibly helping with MGD. Not every person's eyes tolerate it, I know.

[Betsy]

So a year ago when I wasn't doing nearly as badly as I am now, an opthamologist wrote that I have 6 working glands in the right and 7 working in the left. This as never communicated to me, I just happened to find out that's the notes he wrote. No info on the quality of those that are working nor if this is upper or lower glands. This was based on slit lamp exam I assume since I did not have a meibography nor lipiview.

A year later I am doing very badly. I did the lipiview today and when she asked if one eye was worse, I said it was always the right before, but now it's definitely the left, though both are super bad. She said that I have 17 working glands on the left and 6 on the right! This was crazy because both eyes are equally bad with the left being worse sometimes. Those working do produce a thicker than ideal oil. She said my lipid is 50 in the right and 100 in the left. My tbut was 3 and 4 seconds. She felt I would only benefit from lipiview in the right eye and said the left does not have MGD. She said if we did LF in the left it may not be a noticeable difference. What confuses me is how can I not have mgd in the left if my tbut is so low? She thought it was more of an aqueous deficient eye an the right mgd. She showed me where my glands were atrophied and I naturally felt really depressed about them. But she said "it's not that super bad yet."

So I agreed to do the right eye against all reason and logic in my head based on what all of you have said. So if it fails, I have no one to blame but myself. I don't earn much so it will be an expensive lesson that was preventable. But like many, I feel desperate. I asked her to do manual expression afterwards and she said the lipiflow already gets all the oil out. I insisted and she put very light pressure and said nothing was expressing but that she expected that post lipiflow for that eye. I wonder what she saw for the other eye that didn't undergo lipiflow. I asked if it was upper or lower glands she counted and she said lower only but that they are usually the same as the upper and so I guess she multiplied by 2? So if she saw 3 working on the right on the bottom then assumes 3 more work on the top? Is that normally how it's done?

Part of me feels like how can I get better when mine is systemic, I am dry everywhere and lately my nose, throat, mouth have been unbearably dry and painful. Even if I ever got comfortable again, the nasty Sjogren's may keep destroying. I am negative on the tests but so are many with all the symptoms till late in the disease process. Lately the dry mouth, lips, throat, nose have been unbearable.

Any insight appreciated very much, thank you!

P.S. I screen printed my results and photos but I got this error when trying to post: Error while saving content: SyntaxError: JSON.parse: unexpected character at line 1 column 1 of the JSON data

[Bibliogirl]

Hi Anncorr,
I wanted to update after three months (was told by the doctor that it would take up to three months for my eyes to improve, then I would "plateau" for about a year. ) January 8th was the three month mark.
I am better. I definitely can look at the computer screen for longer periods of time. My eyelids have not swelled at all since the treatment. I would say that I am 60-70% better, but I do still have uncomfortable days (today is one of them). I find that I can go a bit longer than two hours without using eye drops, but my eyes will usually feel uncomfortable later that night or the next day, so I try to stick to a two hour "drop break" whether or not I feel like I need it. I have not been able to get back into my contacts and Restasis is still a must.
I am glad I had the Lipiflow done, but I am still searching for more comfort. I am seeing another dry eye specialist on February 8th who offers IPL. I will post what I find out from that visit.

[Betsy]

Hi waterbee, I understand. Funny I didn't get notification of your response. You mentioned doing lipiflow in one eye due to costs reasons. I feel like if doctors were confident it worked in enough people, they would be willing to charge 20% for the first eye and when you figure out if it worked weeks or months later, 80% for the 2nd eye. No one will go around with one working eye if they had relief, they'd want, no, they'd NEED it in both. Everybody wins, they get compensated what they originally set as their profit, and patients don't feel jipped so much money for that 12 minutes if it failed them. Technically, if it works so well and their skilled at determining who it might work best for, doctors shouldn't have issue with my pricing structure, right?

[waterbee]

No IPL yet, the journey to london (6 times and back) is making me delay it and I suppose I quite like having it there in the background as some thing new to try when I'm having a "ugh what's next?!" Crisis moment. 😨😨😨😃

[Betsy]

waterbee did you try IPL? you had mentioned you were going to. I wish I lived in Canada where they cover lipiflow. Not that Lipiflow is my answer, but the fact that they cover so much more than here is amazing. Maybe I can buy coverage there but as a non Canadian citizen i bet it doesn't cover much and may be expensive, if it's even offered to people visiting for medical reasons.

[anncorr]

Are you still feeling better after the Lipiflow Bibliogirl?

[waterbee]

I remember my optometrist telling its normal to have lipoflow two or three times a year in some parts of Canada and its very beneficial for those it wears off for, as its safe to repeat to restart the cycle all over again. (but it's covered by insurance and there's is no where else in the world that does it due to costs.) I would get it done again though, as it did help for a few months before it wore off. I actually only had it done in one eye for cost seasons (and as an experiment to see if it actually would last) and that eye even now in tests has a better tbut dispite feeling the same as the other. (Both were the same before the treatment) I just need to become fabulously wealthy first 😃