Dry eye due to fertility treatments

[Linda M.]

I'm new to the site but wanted to share my dry eye story. I did 6 rounds of invitro fertilization approx. 8 years ago and after the last attempt developed blepharitis. About 2-1/2 years ago, I developed severe dry eye symptoms and could no longer wear my contact lenses (which I'd worn for many years). This condition has impacted my life to such a degree that I'm constantly crying and unable to take part in "life".
I've tried restasis for 7 months (horrible); I tried at various times punctal plugs and currrently have had the upper and lower left tear ducts on the left eye cauterized. As of this morning, I'm beginning to use liquid doxycycline for the meibomian gland problem and autologous serum 4x daily to see if I can get any relief. Oddly, NO artificial tears help; on the contrary, usually it makes it worse. My eyes cannot stand to be interfered with, so it's a real dilemma whether to use the warm compresses for the blepharitis/meibomian gland malfunction or whether to not touch them at all.
I'm wondering if there is anyone out there who also used fertility drugs and if they have a similar story?
I've been to the Schepens Eye clinic in Boston, seen Dr. Tseng in Miami and just this past week, saw Dr. Steven Pflugfelder in Houston. Quite an eye travelogue....
Linda M.

[SusieD]

Did all these doctors diagnose you with the same issues and suggest similar things?

[neil0502]

Linda?

Obviously, I can't offer anything very related, but may I impose on you?

You've seen some of the Gods of this issue. Is it possible for you to describe--even ever-so-briefly--your impressions of these various doctors and clinics that you've been to? Maybe personalities, facilities, strengths, and weaknesses?

I think it's very, very helpful for us to understand who might see (for example) Pflugfelder and who might see Tseng based on their particular needs as patients, and on the particular "personalities" of the doctors.

All the best,
Neil

[Linda M.]

Doctors

Hi Neil, I'd be happy to give you my impressions of the variious doctors I've seen. By far, Dr. Tseng has been the most invaluable and knowledgeable. On my first visit, he spent the entire morning performing a myriad of tests on me to determine exactly what kind of dry eye problems I have. On my last (3rd) visit to him, he established that I have a redundant conjunctival fold and that I need an operation to correct it. This was mentioned during the second visit, but he gave me other options to try first. When I email him, he responds within 24 hours and actually responds to telephone calls as well (!). He has developed surgery procedures using amniotic membrane that supposedly help dry eye sufferers under certain conditions.
Two years ago, I saw Dr. Reza Dana at Schepens and he was a robot. I barely felt like I was in the examining room; I sensed that he would suggest the same treatment to me or anyone else who walked in the door complaining of dry eye. Also, the resident underlings were horrible to deal with prior to meeting with him. (ie.-"Wow, you really make NO TEARS, ha ha").
On this same visit, I met with Dr. David Sullivan, a scientist there who, in conjunction with Allergan, is developing an androgen eye drop. It's still in Stage III development, but the trials are promising.
I also met with another scientist at Schepens whose name escapes me who had a machine that could literally record on video the meibomian gland film activity.
Also, the liason person there, Rich Godfrey, is a wonderful contact and very nice to deal with.

On my recent visit to Dr. Pflugfelder, I was given a basic exam that I have come to call the 'generic dry eye visit.' It was neither informative nor bad, just the usual stuff ("use warm compresses, doxycycline, etc."). He does, however, prescribe autologous serum eye drops (which I couldn't find here in Los Angeles). At Baylor Memorial Hospital, I was hooked up to a machine that separated my plasma (which becomes the eyedrops) from the red blood cells, then returns blood cells back into my body, so it was not invasive in any way. I brought 300 vials back home (via an ice pack) and am now trying that to see if I can get any relief. He also prescribed liquid doxycycline, instead of pills, which appeals to me as it isn't systemic then. I'm waiting to try that as I want to see how the plasma tears work first.

Again, if I were to recommend anyone it would certainly be Dr. Tseng. He is an expert in dry eye and really takes into account all of the personal factors before making his diagnosis.

For the most part, I've found that one really has to be their own doctor in weighing all of the various medicines and treatments. For all of my research and doctors visits, I certainly think I should have reaped more rewards at this point.
If anyone has any good feedback about the autologous serum, I'd love to hear from you. Best, Linda

[Linda M.]

dry eye diagnoses

Hi Suzie D., in response to your question about my various diagnoses: yes, almost all of the doctors say I have evaporative dry eye due to a decrease in tear production combined with blepharitis/meibomian gland disfunction. Dr. Tseng further diagnosed that my inner left conjunctiva (which gives me a lot of discomfort) has a wrinkle (fold) in it and should be operated on. I'm waiting to see how the autologous drops work, as surgery is such a serious step. Has your dry eye been properly diagnosed?

[neil0502]

Thank you very much, Linda.

Not only do I firmly believe that your lessons are powerful and important for all of us, but one thing that you said is absolutely on-point for me.

I don't know Dr. Tseng--only know of him from this forum--but ... that sort of responsiveness is of incalculable importance to me.

In the last several months, I've narrowed down, by research, the number of ophthalmologists in the world who have significant research experience in my particular (presumed) problem (preservative-induced toxicity) to two: Pflugfelder and a guy in Paris, France.

I reached out to Pflugfelder with a concise, but information-dense e-mail, left messages at his office, and never heard back. Finally got ahold of the scheduling person [EDIT: I got ahold of his administrative assistant] who asked that I re-send the e-mail to her directly. She would discuss it with the Dr. and he would call me back. He didn't. She didn't. "Scheduling" did.

The same e-mail was sent to the Doctor in Paris. The next morning, in my inbox, was an e-mail from this doctor that--in the day of typewriters--would have been a page long. It was caring, thoughtful, informative, helpful, and demonstrated a clear understanding of how the quantitative values and test results that I explained would all play out in my eyes.

So ... I'm going to France.

Would I still go see Dr. Pflugfelder anyway? Sure. I have the distinct impression that he's an excellent doctor, a skilled researcher, and a top-notch diagnostician for us folks ... but ... the doctor that demonstrates the kind of genuine curiosity, compassion, intellectual interest ... whatever it is ... that you described in Dr. Tseng, and that I'm experiencing with Dr. Bauduoin goes a long, long way toward bolstering my confidence in their abilities to help me manage my case.

All the best, Linda, and thanks again for the narrative!

Neil

[sazy123]

Neil: who is the french doctor who you are going to see? What do you hope to achieve out of the visit? a better diagnosis or different treatment? Im asking this becuase obviously france is close to england and i assume that you have tried most mainstream treatments for dry eye (from what i can gather anyway). How long is the wait to see him?

[neil0502]

I will be seen by Dr. Christophe Baudouin [1]

As you know--in addition to underlying issues of binocular and accommodative dysfunction--it seems like the preservatives in the cycloplegic drops that I used for nearly seven years "did me in." At least that's my theory after much research.

Dr. Baudouin has authored more peer-reviewed articles dealing directly with the mechanisms by which benzalkonium chloride harms the eye (cellular changes, verified through electron and confocal microscopy, etc.) than anybody. When I told him my story, he said

I guess your are victim of both a dry eye due to cycloplegics and toxic side effects of long term use of BAK

. That sort of made him my dude

Selecting a doctor is really sort of like selecting a kitchen knife, or the right spices for cooking, eh? I have gone through (as most of us had) many of the general ophthalmologist, optometrist, and neuro-ophthalmologist channels, but none was directly experienced with BAC-toxicity, so--while they could tell me "sounds right." They couldn't truly diagnose.

All I really hope for from this visit is a confirming diagnosis of "Yep. That's it. Here: look at the images from the microscopic studies of your eyes. Now compare those to the images of BAC damaged eyes from earlier studies. Same."

I actually don't think there's much else to do to repair ... beyond that which I'm already doing.

Then why go to this much trouble for a diagnosis? If it weren't for the incredible work load (80 to 100 hour weeks--nearly all computer and reading) of my last job, there's no reason to think that my accommodative spasm would have returned. Because it did, I had to use more drops, then stronger drops, then stronger drops more frequently. It's quite likely that my Workers Compensation would take financial responsibility for all of the treatments, PanOptx, eye drops, scleral lenses, Doxycycline trials, doctor visits, etc., etc. that may/will be part of my future.

As you all know ... this stuff isn't cheap -- certainly not on this side of the pond.

They scheduled me about two months out. The hospital where Dr. Baudouin works definitely looks like a good resource for dry eye/anterior segment issues, generally. It might be worth calling their "main number" [2] to talk with them. Maybe a little Chunnel excursion would be worth your while.

I'll buy you a beer/coffee if I run into you there

[1] Second guy here: http://www.soe2005.org/index.php?lan=e&nav=111

[2] I think this is the general info....

Centre Hospitalier National d’Ophtalmologie des Quinze-Vingts,
28, rue de Charenton, 75012 Paris
Tel : :+33 1 40 02 12 10
Fax : :+33 1 40 02 12 99