Need Advice! Having a hard time....

[kanon]

So I'm an American living in the Netherlands. Had history of dry eyes around 2004- got my uppers cauterized and all was well. Fast forward to this past Feb. I got conjunctivitis and my eyes have been so dry and painful for the last 4 months. Drs here in the Netherlands have put numerous punctal plugs in my bottoms, and they pop out- i think we've done this 4 times. (The normal "permanent" mushroom topped ones definitely help when they are in). One doctor here who knows what she is doing had me start doing warm compresses, stay away from certain foods, take Omega-3, and do drops. I haven't tried Restasis since you can't get it in the Netherlands. After 3 months of this I'm still in a lot of pain, my mom flew over to help with the 3 young kids- since I'm walking around the house with one eye closed (whichever one hurts the worst at the time). I can't drive, she's doing all the grocery shopping etc. I'm waiting for goggles that I ordered to come in. Other than that I have to use some swim goggles that fog up and don't have my Rx.
This is all just really pathetic. The plugs in my lowers (and previous cautery of the top) have helped a lot but they keep popping out, then it takes forever to get another appointment to get more put in. So I just want to get them fried shut (cauterized)! But I can't find a doctor in the Netherlands who does cautery. I've called my old doctor who did the first cautery in Wash D.C., have an appointment on June 19th. Haven't bought a ticket yet...it will be hard on the family (a grandfather will have to fly over from the States to help my husband take care of the kids) but I'm tired of waiting around for warm compresses and Omega-3s etc to kick in. I'm in a lot of pain! I worry that the doc in D.C. won't want to let me have 4 puncta cauterized...can only stay max of 2 weeks there...worried about spending a lot of money to fly there and not getting help! And also worried about cautery being so permanent.
What would you do???
Thanks for listening! Ashley

[PotatoCakes]

Can you find / afford a nanny / au pair to help your husband while the kids while you are in the States? That might be easier & less expensive than the grandfather coming over?

You can get prescription swim goggles. My husband was so impressed when I got mine that he now wants a pair! They aren't nearly as expensive as I thought they'd be, somewhere around $50, not cheap but I thought they'd be much more expensive. Next, try this with cheap non-prescription goggles first, drill tiny holes in the bottoms of your goggles. Start with 1-2 and increase the number of holes as needed. This will allow just enough air flow to let some of that fog out that you are experiencing while still providing protection from the elements.

Next, while you are here, I would see if you can get a U.S. doctor to prescribe Restasis and have it shipped directly to you (contact a local pharmacy to do that). If that's not possible, see if you can get the doctor to prescribe Restasis to your mom; she can pick it up and ship it to you. You can get at least 60 days (times 2 if you use the same vial for your entire day's worth of applications) of drops at a time usually, maybe more if you're not using insurance to pay for it. Enroll in their program and you'll get money off the prescription. It may not be entirely legal but if it helps you, it's not like you're shipping anything truly dangerous and people travel with Restasis all of the time so it's already going in and out of the Netherlands and every other country.

I've got to take my daughter to school right now but when I get back, I'll look at my prescription goggles and let you know what brand they are. I ordered them through my mom's eye doctor since I'd never heard of them before. They are really awesome and like I said, even my non-dry-eye husband is jealous of them (smile).

[Rebecca Petris]

(((Ashley))) hugs. Sorry you're going through this.

Ever tried dissolvable plugs? Wonder if that would help. Just thinking about travel issues - what about finding a dr. in London that can cauterize or that has a better arsenal of plug types? Can get there and back in a day (or so).

[kanon]

I did try dissolvable plugs and they didn't do anything to help that eye that it is in (left). The other eye has the permanent one in right now and works great. So the dissolvable that I have in my left is like it isn't even there. Major pain/burning. Btw, my TBUT is 1-2. ABout Restasis, I have non-obvious MGD (the dr. here that seems to know much more than most opthalmologists- she said she actually had this dry eye problem, wasn't finding answers, so went to medical school to figure it out! Wow. I've heard Restasis is not really for MGD people? More for aqueous deficiency? Don't even know if I want to try it right now.
I ordered some sunglasses from this website and maybe will be here soon- that will help. Potatocakes- I am interested in your Rx swim goggles!
Afraid of having all four cauterized? Would you do it, or wait long months of misery/not being able to function with the kids hoping the other methods I am doing work? My mom can't stay much longer!!
THanks for all your help. This forum is a Godsend! Btw, some of our best friends are in Poulsbo, WA. and there sure do seem to be a lot of Pacific Northwesters on this forum! Ashley

[littlemermaid]

the dr. here that seems to know much more than most opthalmologists- she said she actually had this dry eye problem, wasn't finding answers, so went to medical school to figure it out

I was just thinking this, that you may be able to do well in the Netherlands through ophthalmologists at the university hospitals. We've just seen a consultant doctor here who went himself to the best in UK, and to US, and finally found successful treatment in Leiden (this was for a systemic condition).

We are controlling flareups with short-term preservative-free steroid, then tapering off to a minimum as the eye surface and meibomian glands recover.

Is this doctor your general practitioner? If yes, then she would also be the ideal person to talk for help about the degree of anxiety you are suffering. So much to worry about.

[PotatoCakes]

The brand I have is called Leader http://www.zleader.com/
Looking at the 'Contact Us' page, it appears that they have a division in the UK so I bet you can probably find them in the Netherlands, somewhere. Perhaps your eye doctor could get them for you? She may have other patients who would also be interested in prescription swim goggles.

Cauterization ... One of my former eye doctors wanted to do it. I didn't trust or care for him despite him being a well-known "expert" in dry eye issues though so the idea always made me nervous. Plus, when he put plugs in, he caused me so much pain that I actually jerked away and I didn't feel comfortable with him using a cauterization tool near my eye. I ended up finding a new doctor, one who I like and trust, and the new doctor isn't as thrilled about plugs / cauterization as my old doctor. Still, if plugs helped my symptoms enough, I would consider it (they don't). The idea of permanency makes me nervous. That said, I recall people on this board saying their ducts opened back up after cauterization eventually so it may or may not be permanent depending on the person, although it would probably last longer than a plug. If I were to get my ducts cauterized, I'd probably just get the upper OR the lower, not both, done and see how that works for a while since it is theoretically permanent. That's just me though. I'd rather take baby steps then go all of the way with something that's permanent that I'm not 100% sure about. If the plugs make a significant difference for you, it could be worth doing it all at once. Only you know how much they help and if you have to come all of the way to the U.S. to get it done, that certainly plays into your decision.

I wish you didn't have to deal with this.