(See Part One of my story here.)
It’s been five years since the dreaded DCR surgery. When I wrote the main content for this site, it was less than a year after I’d had the surgery. I was for all medical purposes ‘recovered’ from the operation, but I didn’t really know what the long-term consequences would be. I suppose that you can never know until you live it. And now—that’s exactly what I’ve done. I’ve gone on living, working, trying my best to have a normal life despite the obstacles, inconveniences, and psychological hurdles I have to deal with as a result of my DCR surgery. It hasn’t been easy, and I haven’t given up on finding permanent relief, but to an extent I am just trying to make the best of it and not let the side effects rule my life, despite their ever-present and painful nature.
In the following writing, I’ll share with you what’s improved, what hasn’t, and the sometimes-tortuous journey I’ve taken to eliminate the symptoms that resulted from the surgery, especially (and ironically) my severe dry eye. The dryness in my left eye (the one I had the surgery on) has become progressively worse with time. And, although my doctors don’t know exactly why, the right eye has begun to experience substantial dryness (though not nearly as bad as the right side, of course). It’s a mysterious thing, but sometimes when there is a problem on one side of the body, the opposite side follows. It may have something to do with the nervous system and how it connects from right to left.
It’s not all bad news, though. Read on and you’ll see how I’ve managed to find some substantial relief, and what I’m doing to find even better solutions today.
Temporary ‘Solutions’: Artificial Tears and Ointment
It’s certainly been a tedious five years. I continued applying artificial tears every five to fifteen minutes for two years. It’s difficult and sometimes embarrassing to drop them into my eyes in public, wherever I am—at a supermarket, on a train, during work. I get funny stares from people as I wipe up excess dripping down my face, and it leads to many awkward, uncomfortable, and generally unnerving moments. As often as I’ve tried to just bear the pain, the pain wins and forces applications of drops, regardless of what I’m in the middle of doing.
One particular time I was at a festival and was exploring all the stalls. The festival was indoors with strong air conditioning, and my eyes (especially the left) became very uncomfortable. So for the 20th or so time during the festival I applied the artificial tears, wiped the excess and continued exploring the stalls. Then one stall owner became very concerned and asked, ‘Ohhh, are you crying?’ I explained that I had just applied artificial tears and they make the eyes look as if I’ve just had a cry. That one instance might not sound like much, but now multiply it by a thousand and you are approaching what I’ve dealt with for the past five years. It affects the way people perceive me, and even the way I perceive myself.
It’s difficult to enjoy yourself with such a nuisance to deal with. Searching for a vial of artificial tears in a pocket, choosing a spot or corner to apply it, tipping the head back, keeping the hand steady as it’s squeezed in (try doing it whilst in a moving vehicle!), then searching for a bundle of tissues to wipe the dripping. Eventually it gets to your nerves and causes anxiety, especially when it’s done 20 or more times a day. It’s enough to drive anyone crazy. To make matters worse, I’ve had problems with anxiety in the past, making it even more difficult to deal with. That anxiety was well controlled before my DCR surgery. But having worry about tending to my eyes five to ten times an hour—often in crowded situations or other instances when it wouldn’t usually be appropriate to apply eye drops—has led to relapses.
The impact of frequent eye drop application on work and social life is significant. Imagine attending full day conferences with business associates in air-conditioned rooms. It’s almost impossible! In those situations, it’s not possible to rely on artificial tears. Even the gel varieties evaporate in minutes and pain returns. Only ointments don’t evaporate as frequently. Since they are made from paraffin wax, they remain on the eyes for up to three hours. So before special functions such as a business conference, I’d saturate my eyes with ointments. It provided a reprieve of constant pain and frequent eye drop application and allowed me to concentrate on the conference.
However, by lunchtime my eyes would become very red and require further application of ointment. The second application is put onto red and irritated eyes, and only makes them worse. At this point, I’m forced to take regular toilet breaks to splash water over my red and painful eyes in an attempt to soothe them. Eventually I have to take oral pain medication to get through the remainder of the conference. By the end, I’ve missed important parts of the lectures and often disturbed those around me a number of times with having to get up or dig through my bag.
It wasn’t until after having fussed with ointments for at least a year that I read eye ointment has been speculated to make dry eyes worse. Since it’s made with a paraffin wax, it’s not water-soluble. While on one hand this prevents it from being washed out by tears, it can also prevent the eye surface from being covered from any natural tear production. Natural tears contain electrolytes and various substances needed to nourish the eye surface and ointments prevent that from happening.
Searching for Surgical Solutions: Punctal Plugs
Having suffered so much pain and discomfort, it was finally obvious artificial tears were not the answer. I was desperate for a better solution. At first, after the experience with DCR, I avoided surgeons. I had lost faith in surgeons in general, and felt like I could never trust a surgeon again. But I couldn’t continue the way I was, so eventually I consulted a new oculoplastic surgeon for treatment of dry eye.
I was pleasantly surprised by the consultation. I instantly gained a rapport with her and could see she was a compassionate and thoughtful surgeon who understood what I’d been through. She listened, letting me do most of the talking, and then answered all of my questions. After a long discussion, we decided to give an outer punctal plug a try, and she put in the largest punctal plug available. Indeed, the punctal plug had to be very large since the puncta on my left eye are overly large due to DCR. The next day, the punctal plug fell out. It was just too loose, and no company makes an external plug large enough to fit my surgically dilated puncta.
I was offered punctal plugs that go further into the puncta (into the canaliculus) where less dilatation occurs. However, many people have had these plugs migrate into the tear sac, requiring surgery for removal. I wasn’t comfortable with this idea, but I was glad to have had the option and the risks explained to me so that I could make my own informed decision.
Punctal cauterization was another possible solution. But since it’s not reversible, I didn’t want to go through another eye operation and cause further complications. So I thanked this surgeon and continued on my way—and on my way to a major breakthrough!
Other Non-Surgical Solutions: Moisture Chamber Glasses
At this point, I purchased a pair of ‘moisture chamber glasses’ from Dry Eye Shop, and it was a major leap forward. These glasses worked! They have a foam seal on the backside of the frames and fit flush against the skin (think goggles) to keep the eyes in a sealed chamber. This creates a warm and humid environment, and prevents evaporation of the watery layer on the eye. Small vents and a special coating prevent fog build up on the inside of the lenses. They worked like a dream, and my eyes felt warm and comfortable. I was able to go without applying artificial tears for up to an hour, which was a huge relief. It gave me back an enormous amount of freedom. I could attend conferences without pain, go out with friends and family to a restaurant without discomfort, use computers longer (essential for my work), and enjoy outdoor sports again. I even indulged in paragliding comfortably! I certainly never thought that would be a possibility again. The glasses were a miracle for me. My use of artificial tears was dramatically reduced and my anxiety levels went down with them. I enjoyed the reprieve—whilst it lasted.
The moisture chamber glasses can be purchased with a dark tint for strong sun, or all-day lenses for indoor and outdoor use. Custom prescription lenses are available, too. One drawback is their goggle-like appearance, which is especially noticeable when the lenses are clear. While they are generally rather fashionable, I am questioned about it regularly, and find myself having to tell the same story over and over again. I try to not go into too much detail, but often one question leads to another and next thing I know I’ve had to relive my whole surgery before the questioner is satisfied. At first it didn’t bother. The pain relief outweighed any prodding, judgements, or embarrassment from wearing them. It was a small price to pay. But day in and day out—it wears on me.
Over the following years, my eyes become progressively drier and application of artificial tears increased despite the moisture chambers. I became more sensitive to the slightest breeze of air that snuck into a small gap of the foam corners of the glasses. Being without the glasses for more than a half hour was impossible.
Headache frequency and intensity increased along with the progressing dry eye. Headaches often became migraines, which forced me to nurture my eyes even more and reduce strain as much as possible (getting enough sleep, reducing computer use, etc.). Taking a Panadeine Forte (same as Tylenol with codeine for non-Australians) for a severe migraine at night is not unusual.
Revisiting Surgical Solutions: Smart Plugs and DuraPlugs
Worsening of symptoms forced me back to the oculoplastic surgeon mentioned earlier. We were both focussed on punctal closing without using irreversible or risky options such as intracanalicular plugs or cautery. She had recommended “Smart Plugs”, which are plugs that are inserted into the canaliculus and expand with body heat to occlude the drainage of tears. They are permanent and difficult to remove once inserted. Fortunately, I had already done research on Smart Plugs and knew they have a high complication rate, and that many surgeons refuse to use them. She accepted my refusal graciously, but didn’t quite believe Smart Plugs were as bad as I have suggested. I understand she works on a multitude of eye disorders and cannot possibly keep up with all the research available.
I allowed her to insert “DuraPlugs” which work the same way as Smart Plugs (by expanding with body heat), but they dissolve within three months. Within an hour I felt more moisture and tear accumulation on my eyes. It wasn’t a lot, and they didn’t provide enough moisture to go without moisture chamber glasses, but any small improvement was welcome. The small relief was short lived, though, and within about three weeks my left eye became bone dry again.
Since the first trial of DuraPlugs, I’ve had them inserted by a few other ophthalmologists with similar results. We suspect the reason they don’t work fully is because of the gigantic size of my dilated puncta due to DCR surgery. One particular ophthalmologist said that it’s like “throwing a car into the Grand Canyon”, and he put two DuraPlugs into the largest puncta. In fact, a third Duraplug would have easily fit. With the puncta so large, the plugs couldn’t expand enough to completely occlude the puncta. We had some success pushing them further in, past the puncta and into the canaliculi.
It seems cauterization was the only way to completely occlude the puncta in my situation. But after my DCR, I refuse to have surgery around my eye that is not reversible.
Meanwhile, I’d heard of these amazing devices called scleral lenses (the sclera is the white part of the eyeball). The scleral lenses are made from a piece of rigid plastic—similar to a large contact lens in design but not material—custom measured and machined to fit your eyeball. It is filled with saline and placed onto the eyeball, providing moisture to the eye all day long.
So, I began a long journey of trial and tribulation to obtain a pair of scleral lenses in Australia. Luckily, I was fortunate enough to find one of the best optometrists in the country for scleral lenses. My optometrist is patient, dedicated, persistent, and has never given up on me despite multiple scleral lens fittings. He vowed to persist as long as I was willing to. To receive such genuine and dedicated service was a huge relief for me, and another huge boost for my confidence in the eye-care community.
The downside is that scleral lenses are very difficult to fit and take multiple modifications and a bit of trial and error. My optometrist is three hours away, and I’ve attended at least twenty consultations in an attempt to obtain a comfortable fit. We are not quiet there yet, but we are at the point where the scleral lenses feel generally comfortable. They are still slightly uncomfortable when first inserted, but within 30 minutes I can barely feel them in my eyes. I can’t wear them all day, but I can wear them for hours. At the moment, we are still adjusting them to enable longer wear time, aiming for a full day of use.
Scleral lenses definitely provide substantial relief for dry eyes, but it depends on how dry your eyes are. An extremely dry eye (such as my left eye) still requires artificial teardrops whilst the sclerals are in. As they begin to dry out, friction occurs between the inner eyelid and scleral lens. Drops need to be applied to provide the lubricating moisture around the outside of the lens. But the teardrops only need to be applied occasionally, not nearly as often as without the lenses. I don’t generally require any teardrops on my least dry eye (the right eye) whilst wearing sclerals, but find I need drops in the left eye, especially if not wearing moisture chamber glasses over the top of the scleral lenses.
Without the moisture chambers and only wearing scleral lenses, I’ll require drops in the left eye every one to two hours depending on conditions and where I am. If in air conditioning, I may require the drops every thirty minutes at the most. The same applies if facing a headwind outdoors. But usually I’ll wear my moisture chamber glasses over the scleral lenses if outdoors in strong wind.
My particular scleral lenses are 18mm in diameter and thus don’t cover the entire exposed sclera, so they are bound to feel some discomfort. But it’s important to note that the discomfort is nowhere near the unbearable pain of not wearing scleral lenses and facing the wind with exposed eyes. The most sensitive part of the eye is the cornea (the layer that covers the iris and pupil). The cornea is totally covered by the scleral lens. So whilst the most sensitive part of the eye is covered, other areas of the eye will be uncomfortable to a degree without adequate moisture.
Compared to applying drops every five to fifteen minutes without sclerals, once an hour with them is fantastic! Being able to have eye-to-eye contact during a conversation without wearing distracting goggle-like moisture chamber glasses is also nice. All in all, for me, it has definitely been worth the expense and tedious fitting process of scleral lenses.
Amidst my long fitting process with the scleral lenses, my oculoplastic surgeon and I continued to explore other options. She suggested the use of mini-monaka stents as an alternative to punctal plugs. Mini-monaka stents are used to repair canaliculus lacerations, not generally used as punctal plugs. However, they fit the criteria for me because they had features that prevented them from migrating into the tear sac, they would not fall out and could be removed (thus reversed). They were also softer on the eyeball than conventional plugs. So I went ahead with the surgery and had them put into both lower puncta. The surgery was done under general anaesthetic and the left lower punctum was sewn tight around the stent to make it hold.
I didn’t notice much improvement, perhaps because my left eye is so exceptionally dry and only the lower puncta were stented (still allowing drainage from the upper puncta). Unfortunately, within a short time the lower punctum of the left eye (the DCR eye) developed a reaction and pushed the stent out. My right eye still has the stent.
So the mini-monaka stents were not a real success for me, and I wasn’t at the stage with scleral lenses to wear them daily. My surgeon was out of options and offered the previous suggestions of Smart Plugs and cautery—neither of which were appealing to me because of possible complications.
It seems scleral lenses are the best option—if I could ever get a pair made to fit properly! I’ve been through many scleral lens pairs, many consultations, and, after a full year, I still don’t have a pair that fit perfectly. So onward I continued with drops and moisture chamber glasses as the only treatments used reliably. Occasionally I’d use a heat pack on my eyes and express the glands in the eyelids for extra relief.
The months passed, and I’ve gone on with my life as best I can. The only new treatment I tried was cyclosporine drops (Restasis), which offered some relief when combined with punctal plugs, but not a lot. My optometrist has painstakingly measured and analysed each pair of modified scleral lens, and we are closer to our goal. Currently, my scleral lenses feel very comfortable and I can wear them up to six hours a day. We are continuing modifications until twelve hours we acheieve twelve hours of comfortable wear-time. Unfortunately, getting the lenses in can be an ordeal. It often takes a lot of tinkering and adjustment to get them to sit right. Some days, especially when in a hurry, I won’t insert them because I don’t have the time to. I’ll admit, many experienced scleral lens wearers can insert them very quickly, without fuss. I supposed I’m just not as experienced with them yet.
I’ve had two major goals for this writing. On one hand, I want to show others going through similar circumstances that there is hope. There are options worth pursuing. Even solutions that didn’t work for me might work for you. I know it’s hard to trust surgeons after feeling betrayed by them, but the right surgeon can help you find relief. Try to find a surgeon who will listen to you and explain all of your options, as well as the risks. If the surgeon seems arrogant and rushed, just walk away. You deserve better. You are the client, the customer, the dependant. You deserve to be treated with dignity and respect. Don’t let your doctor be a bully. You’re free to walk out of the office at any time and take your business and your wellbeing elsewhere. Always remember that.
On the other hand, my second major goal is to demonstrate to the world at large—including and especially oculoplastic surgeons—that the risks involved with DCR are very real, and have a lasting impact. It’s easy to dismiss a risk on paper, but try living it out. Try living for five years with your eye so dry and painful that your eyelid feels like sandpaper. Try living that out, looking for solutions, taking two steps forward and one step back. Yes, I’ve found some relief, but the problem is far from fixed. In all likelihood, it will be years before I can find a permanent solution. In fact, for all we know, I may never find one. That is the reality of the risk you are willing to write off. It’s real, not just hypothetical.
I am hopeful, though. I’m hopeful that I will find permanent relief from my DCR-induced dry eye, and that this writing will save at least one person from unnecessary surgical risks. When a DCR needs to be done, then it needs to be done. At that point, the risks will have to be weighed out. But how often does it really need to be done? How often do patients really need to take these risks? That is the question we need to ask.
Thanks for reading my story. I hope it helps you. See my Blog page for updates.