New Member on her way to try Lipiflow at UCLA

[caroline929]

Hi there,

I suffer from MGD for almost 8 years. Maybe caused by Accutane when I was younger? I don't know. I don't wear contacts and I never did the Lasik surgery.
As many of you, I have tried tons of things to get better: Asazite, lotemax, restasis, punctual plugs, acupuncture, Omega3 all over the place etc... you name it, I did it!
Warm compresses and eyelid cleaning foam have helped, everything else has not.

I haven't tried the probing or the laser yet.

I made an appointment at UCLA with Dr Rex Hamilton for an evaluation and maybe a session of Lipiflow if I'm a good candidate.

I'll probably do only one eye to start. I would love to get more feedbacks on this new procedure. According to what I read so far on this forum, the results don't seem outstanding. I'm desperate and I really feel the need to do something about it (something that I can afford). The laser and the probing are much more expensive than the lipiflow and the feedbacks on these 2 procedures don't seem better than the ones on the lipiflow.

I would love to hear from anyone who got a successful result with any of these new procedures.

Thank you all

Caroline

[Emerald]

Hello,
My daughter, age 22, has been suffering with MGD for about 3 years. She has tried everything, like you, except the plugs, and nothing has helped. She says the compresses help slightly, but not enough to provide relief more than for a few minutes. She made an appointment also at UCLA / Dr. Hamilton, but we will be cancelling as the LipiFlow procedure is now being offered at a physician's office closer to our home in Northern Calif, and she went yesterday, was evaluated, was a candidate and had the procedure done. According to her it was a relaxing, comfortable procedure, no pain at all, and took 12 minutes total, and cost $850 per eye, plus evaluation costs. I would be willing to help her pay for anything to get this problem fixed..she has no relief at all as of yet. It was just yesterday, and the doctor said results might take up to six weeks.

It was one of her best evaluations yet, and she has been to numerous ophthamologists. (UCSF - UC Berkeley, etc...) The LipiFlow evaluation did say that she isn't blinking properly, eyes aren't closing completely with blinks, and that has contributed to her MGD, so she has to practice consciously blinking, more night ointment as they think her eyes aren't closing completely while sleeping, increase Omega 3s, and a new drop from OcuSoft. With all of this, she is hoping for any kind of improvement.

If you have any other LipiFlow questions, feel free to ask.

[littlemermaid]

Emerald, Do you have reservations about punctal plugs? With chronic MGD for 4 years they are really helping.

[Emerald]

Hi Littlemermaid,
Yes, Mmy daughter has reservations about punctal plugs, i think psychologically the idea bothers her some, and she has read that they can make your eyes water a lot and don't always help MGD...but after reading what you just posted, maybe it is something to think about again. How old is your daughter?
Have you tried everything? Has anything brought relief besides the plugs? Does she wear glasses/contacts? My daughter would love to start wearing her contacts again, and be able to sleep etc. just a day without the agony of this condition.

[littlemermaid]

Emerald,

Plugs in the lower puncta were the right way to go for us. After standard treatments to resolve keratitis from mgd like Caroline - antibacs, steroids, different tear substitutes (Restasis not available in UK) - she is well managed on:

- daily warm compress and eyelid rub to keep the glands moving and tear substitute drops (preservative free)
- careful healthy diet with some fishoil supplements as we feel suits her
- age 11, when the mgd started, she had no signs of rosacea except a bit of normal acne starting, but now age 15 she has more obvious rosacea, although it is pretty well managed - we treat this as a chemical hypersensitivity disorder ie no preservatives in eyedrops, no perfumes, minimum household and bathroom detergents - it dictates what's happening to the eyes
- elimination diet to find possible food intolerances - gluten, yeast, sugar
- eliminating allergens from the bedroom

Basically, the factors Rebecca lists in http://www.dryeyezone.com/

The key so far has been: control inflammation, clear meibom, restore eye surface, look for and eliminate external and internal causes of inflammation, keep meibom healthy, protect eyes.

These seemingly simple measures have really helped - plus protecting the eye surface from drying out (glasses, computer time, careful with a/c). To give perspective, she has rosacea flareups which can be agonising and destructive to the eye surface (needs steroid, antibacs), but we coax the eyes back to good again like this. Stopping chemical eyedrops in remission and just using normal saline 0.9% has been a huge help - I don't think there would've been this degree of improvement without that because the eyes are so sensitive now after years of eg celluvisc. Saline has no lubricant qualities and is not retained long so she has to be in a good state to maintain on it.

Because she has dry eyes, overwatering was never a problem with plugs. Also the upper puncta are open. Normally the ratio would be 60:40 with more tear draining down the lower (PubMed research, Australia somewhere, sorry guys). After lower plugs, more tear drains down the upper, but tear film is held on the eye surface, which is what we need. The only reservation I have is that if the MGs are infected, there is a bit of a toxic pool starting that would not be good for the surface but we use normal saline eyedrops more frequently, and resolve any MG infection quickly with antibacs anyway. We would hit an inflammatory spiral with steroid, unfortunately, having no usable ciclosporin. But with any infection there would be a risk of infecting down the tear drain (canaliculi), but with skill this could be fixed by flushing with antibacs.

Inserting the plugs was easy because the doc was experienced, relaxed and confident. Where we hang out, they fit punctal plugs on many children, even under 5s. Not a problem. Anaesthetic drops available as required. There are choices of plugs to talk about though.

She wears glasses which help keep the eyes from drying out and help the eye surface heal. When I pay super-docs for advice, which I do sometimes, I'm paying cornea and dry eye experts for the skill and experience at healing. And the drops and treatments are the same as anywhere else, but it's the skill and judgement that is valuable. I'm just wondering who your best docs on that would be.

Does she wear a sleep mask?

What is the worst thing that happens for her at the moment?

Does she have an associated skin type, like Caroline and LM?

Lipiflow is not in UK yet, I don't think, but we are doing OK on Blephasteam goggles to keep things moving. I've been trying to change the consistency of the meibom as above, because in remission it's good and clear.

[caroline929]

Hello Littlemermaid and Emerald,

I just ordered the Blephasteam googles, interesting that little mermaid just mentioned them. I'm glad these googles are helping because they are not cheap. I hope I'll have the same luck!
I used to have 4 plugs and it was a catastrophe, my eyes were marinating in unhealthy tears all day long. Then I got 2 plugs removed after a few months. I have been with 2 plugs (lower lids) for at least 2 years until a few weeks ago. I decided to finally follow this gut feeling that the plugs were actually irritated my eyes instead of offering some relief. I got the one on the left eye removed. After 2 weeks I can tell you for sure that my left eye feels much better than the right eye. I know there is no study that proves the plugs can be an irritating factor. I was experimenting. Maybe that won't work for someone else. i'm going to keep my last plug in the right eye for 2 more weeks before I take it out.
Emerald, I will be curious to know about the final results of your daughter's procedure. Apparently people who have tried the Lipiflow on this forum were all perfect candidate but ended up pretty disappointed by the results. I'm thinking that maybe people with good results are too busy enjoying a dry eye free life so they don't post. Hopefully!

[littlemermaid]

Hi Caroline ~ great information, very similar experience to ours, thanks. We're still liking lower plugs very much but looking out for infection and toxic pool, as you describe. The ophth says he's never had infection but he does use a preservative-free antibacterial drop as little as 2/wk for long-term mgd children to be on the safe side. However, she is much improved without the antibac because of chemical sensitivities from long-term drops (chemosis), but I'm fine with plugs as long as we've got frequent, very experienced, monitoring of the surface. If we didn't, I'd worry and do what you're doing.

I haven't bigged up the Blephasteam goggles here because of the price in case they don't work for people, but we like them a lot for clogged MGs because they heat perfectly to warm the glands, create the moist environment, and don't touch the eyes. Eyebags have been effective too, plus they get sterilised in the microwave, but I was buying/making new ones every month. Plus the kid likes using Blephasteam as a gadget - relaxing, couldn't be easier. We're wiping the rubber with normal medical sterilising wipes although there are too many crevices for good hygiene, but I'll post up if the rubber disintegrates. Love Thea Pharma so far - respect, guys (all their products are worth a browse because they are very quick to reformulate when research comes out). She uses Blephasteam at night, v relaxing, but in the morning eye rub in warm shower or hot flannel. So it's twice a day for long term maintenance. If she skips, the glands clog up again within a few days.

Good news you can import the French stuff to the US - there's been some doubt here.

I wonder what UCLA will advise.

Emerald, These are long roundtable discussion videos to listen to but docs here are thinking that if the eyes are really improved, mgd or allergy people may be able to wear daily disposable contacts for special occasions for a few hours/week, keeping in mind the contacts and chemicals might be causing the problems (the last video is long but covers a lot). 2007-Dry-Eye-Workshop(DEWS) + dry eye doc discussion videos on current practice

[Emerald]

Hello Caroline and Littlemermaid,

Just to give you an update, as of today, there has been no improvement after having the LipiFlow procedure...$2000 and so far, nothing. However, not giving up all hope yet, as the doctor said it takes up to four weeks, and we have a follow up appointment on July 23. She is also using a new drop called Retaine and night ointment. The night is still the worst time.

The Blephasteam goggles sound interesting, are those available without a rx? About how much do they cost?

My daughter still hasn't found a treatment that helps, and I don't' know how many treatments are left..

She makes plenty of tears, they just evaporate very quickly, so the last doctor said the plugs probably wouldn't be the best option. Unfortunately daily disposable contacts don't come in her rx, she has high farsightedness with astigmatism -- but occasionally she will wear the weekly ones for a day if she has an evening out with friends, date etc.

Caroline, have the goggles helped you?

Littlemermaid, do you think a sleep mask would help if her eyes don't close completely at night? Do you know which one would be good for that purpose?

Even after two years, I find this so overwhelming -- Littlemermaid, I'm so glad you have found ways to help your child, how does she cope psychologically?

Thank you for the info.

[caroline929]

Hi Emerald,

I haven't received the googles yet, I'll probably get them by Wednesday at the latest. They cost 220 euros plus 10 euros shipping fee in France. I had them shipped to my parents, they received them shortly and sent them to me last week. I was told that they cannot ship directly to the United States when I called the google company. I'll start using them as soon as I get them and I will let you know after a few days.
I'm sorry that the Lipiflow didn't help your child. My appointment is on July 26th. I'm not sure anymore I should go for it... I think I have read only one successful result on this forum.
Take care

[Emerald]

I'd sure like to know how the goggles work for you -- and keep me posted if you decide to go for the LipiFlow -- however for us, still no change at all.

[SonicEm]

I'd sure like to know how the goggles work for you -- and keep me posted if you decide to go for the LipiFlow -- however for us, still no change at all.

Hi Emerald
I am also in SF and was considering the LipiFlow for my MGD - am very interested in hearing if there was any benefit as it is an expensive procedure.

Can you recommend a good eye doc in/around San Fran? Mine is OK but does not seem to know much about MGD - just gave me an RX for Azasite and told me to do warm compress 2X/day, plus Systane Balance 4X/day. Any info appreciated!

[Emerald]

Hi Emerald
I am also in SF and was considering the LipiFlow for my MGD - am very interested in hearing if there was any benefit as it is an expensive procedure.

Can you recommend a good eye doc in/around San Fran? Mine is OK but does not seem to know much about MGD - just gave me an RX for Azasite and told me to do warm compress 2X/day, plus Systane Balance 4X/day. Any info appreciated!

My daughter had an evaluation again the other day. She does not feel any relief at all; however, the doctor said her eyelids look a lot better and her eyes aren't red. She and I were both shocked that he said that as my daughter still cannot wear contacts comfortably or sleep well without the pain/scratchiness/dryness. His name is Mark Mandel in Hayward. He performs the LipiFlow procedure and pre-evaluation. I would recommend seeing him, or Matilda Chan at UCSF. She has provided us a lot of information about Azasite, Doxy, and would provide us other options if neither or those works, but we haven't made another appointment with her yet.

My daughter is using Retaine OcuSoft Preservative-Free drops every day (We ordered them online because they are very new and they are designed specifically for MGD: recommended by Dr. Mandel). She is also using Refresh PM Ointment before bedtime, along with warm compresses 2 times a day, and I also bought her a sleep mask that warms up. No 100% relief, but the compresses work temporarily with the MGD drops.

[mdryeye]

I did LipiFlow in Boston few weeks ago, and that was the biggest waste of money. Spent $1800 for 10 min procedure which did nothing to me. I could have done the same procedure with q-tip and hot water at home for free.

[Sammy B.]

I did Lipiflow and am pleased with the results. I have MGD and am post-LASIK.

Feel free to PM me if you have any questions.

Rose

[Emerald]

So far no results from LipiFlow and it has been over six weeks. MDryeye, we are with you on this, lots of money for no change..

Rose (Sammy B) how long did you suffer with MGD? How long after the procedure did you feel better?

[Sammy B.]

Emerald, sorry for the delayed response.

I could not tolerate contacts for about 2-3 years prior to LASIK (1/2008) but without the contacts in my eyes felt fine, so I am not sure as to the severity of the MGD. After LASIK it went downhill over a period of a year to where I had daily/hourly/minute-by-minute problems. So I've probably had MGD for 6 years that I know of.

It took a good month before I felt any results from Lipiflow. I am still pleased with the outcome. Prior to Lipiflow I had driven all over creation to see different doctors, including trying IPL, and was doing doxycycline 100MG twice a day, hot compresses 2x daily, lid scrubs, flax/fish oil, Genteal Gel every night w/ Tranquileyes, onion goggles when at home in the evenings or all day on the weekends, not to mention just going to sit in my car Monday-Friday on my lunch break so I could close my eyes and escape the discomfort. Combine all of that with the outright fear and dread that one can experience when they suffer from something like MGD and you have one unhappy camper. I ended up on Ativan 0.5 mg twice a day to cut the nerves, plus Lunesta on the rough nights.

Today I am off the Ativan and Lunesta, and I use Sooth ointment at night w/ a light mask, then do a thorough unpreserved saline flush in the AM, and once in a while use Genteal Gel during the day. Other than that, I'm fine. Literally... I was standing in Home Depot the other day and realized just how good the eyeballs feel. My diet is still very good and I exercise; every little bit helps. I also still do fish oil daily but moreover just for health purposes.

Rose

[spmcc]

I'm so happy for you, Rose! Your Home Depot story was wonderful (really!!).

All the best,
Sheila

[Emerald]

Rose,
your experience is encouraging, so glad you have gotten relief!! Still no change here..haven't tried doxy yet, but suppose that is the next option.

[gichamp]

I had LipiFlow done a couple of weeks ago and feel I have had some improvement, but it has not yet been a miracle. I had the treatment in Charlotte, NC and I will say I did appreciate the very thorough eye exam and testing that preceeded the Lipiflow - more than I have received with my eye doctor over the last 5 years. The doctor also examined my eyes after the procedure to make sure my lower plugs were unaffected by the Lipiflow and he said to me at that time that I definately had more glands working than prior to the procedure, but as he said, the trick is for them to keep working. I have a follow-up appointment in 10 weeks to see how the glands are working.

I am encouraged by some of the posters who have stated that it takes time to see the full effect because the information provided on Lipiflow is really not very clear whether results will be known immediately or over time. I would appreciate dialogue with anyone who has had the procedure.

[Chemia]

Gichamp, I mentioned in another post that I had the procedure at Duke but the follow up was in Charlotte, NC since I live in Charlotte. More than likely, we attended the same place. I would highly recommend you get your lipiview numbers repeated 3 months later to get a better idea for improvement. I was told several weeks after my lipiflow that several glands were open but when I had another doctor look at my eyes not involoved with lipiflow and without mentioning the treatment I had, turned out all my glands were clogged. So just be cautious. If your symptoms improve, then great but it's also nice to see the lipiview numbers improve.