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Hi everyone.
I started a thread about my experience with probing and lipiflow a while back. But it quickly became quite chaotic so I thought I'd start a new one. Also, I feel like my understanding of MGD has progressed a lot and I don't necessarily back all of the statements I made in the previous thread anymore. And I wanted to give you guys an update on my progression too.
I apologize in advance to those who already know me a bit, as I’m going to start from the beginning.
So here goes:
I'm a 20 year old engineering student from Belgium. At the age of 15, I started wearing contacts. I could wear them all day, every day, without problems. But after a bit more than a year, my eyes started to get dry towards the end of the day. Until I could only wear them from time to time and eventually not at all anymore.
At that point, I just thought that I had abused my eyes by wearing them too much. My thinking was that my eyes were 'dried out', whatever that meant, and that I just needed a break. But my contact lens intolerance didn't go away as the months progressed, so I went to see an ophthalmologist (just at the local hospital). He didn't have any answers for me and he just set me on artificial tears and said that I should swap contact brands if necessary. Surprise, surprise, no change. But heck, I thought, if that's my only problem, then so be it. I had almost no other symptoms.
But a year later, that all changed when my eyes began to feel dry even without the contacts. I felt overwhelmed and angry. But I was still convinced it would go away. Of course it didn't, although I still had more good days than bad days back then and even a few weeks without any symptoms. On one particularly bad day, I went to another local ophthalmologist, and he set me on steroids for a few weeks. That seemed to help, but only for a short time.
I decided this was getting out of hand so I made an appointment at the university hospital in Leuven. If those people can’t solve my problem, then no one can, I thought. I saw two different professors specialized in tear ways and ocular surface but neither of them could give me a proper diagnosis, let alone a treatment. In the mean time I had thoroughly searched the internet for a cure myself. And I quickly discovered cyclosporine, azithromycin, IPL, probing etc... But these people at the hospital hadn't heard of a single one of these treatments. It seemed to me they lagged behind at least 10 or 20 years. They just set me on vitamin A ointments, steroids again, anti-allergetic drops etc... None of this was helping and I was getting more desperate as with every month passing, my condition worsened. By that time I was 19.
So my next step was to go to Quinze Vingts in Paris, the most prestigious ophthalmology hospital in France, to see Dr. Baudouin. I didn't get to meet him, but one of his doctors did all kinds of tests and eventually diagnosed me with evaporative dry eye. He didn't bother to look at my eyelids or meibomian glands much though, but just prescribed an anti-allergetic drop and a steroid (again!) If that wasn't working, I could come back and he would prescribe cyclosporine.
I had to take those two drops for about 6 months, but halfway through I realized this wasn't going to do a thing. I started getting interested in new treatments like probing and lipiflow but I thought America was the only place to get that done. However, I learned from someone on this forum that Dr. Geerling at the university hospital of Duesseldorf offers these treatments.
So only a few months after I went to Paris, I now sat in a chair in Germany. They had Lipiview (to measure the thickness of your oil layer) and a keratograph for meibography, staining etc… They looked at my eyelids and for the first time, somebody tried to express my glands. There was nothing coming out. And for the first time in three years, my condition was diagnosed: I had MGD. They put a whole sheet of test results in front of me. My TBUT was 3 or 4, (under 10 is dry, under 5 is very dry) and my lipiview score was 40 on the left and 20 on the right (under 75 is bad). Apparently, my glands were closed by tissue and they proposed to perform gland probing, followed by Lipiflow. At that time, I was also taking doxycycline.
I was very excited about this treatment and my diagnosis. In fact way too much. Because my subjective symptoms did not change one bit. I felt devastated. So many people had some kind of relief, why not me? After three months I had to go back for a checkup. This time I got to see Dr. Geerling himself. They did all the tests again and despite my lack of subjective improvement, there was still some good news. The lipiview score for my right eye improved from 20 to 40, although my left eye stayed the same (also 40). But more importantly, my glands were open and working and when Dr. Geerling put pressure on it with a q-tip, he said he could see oil coming out of them.
He was honest with me and said he wasn’t too sure how he could further improve my situation, but he set me on cyclosporine. He also said that my eyelids are very red and inflamed on the inside.
So I ordered some boxes of Restasis from America and started this treatment with mixed feelings.
How was it possible that my eyes felt exactly the same even though my glands had opened?
I felt that something was missing. And I remembered what Dr. Geerling said about my eyelids and searched the web some more. And I stumbled across IPL. It had never crossed my mind that this could actually help. To me, IPL was just another expensive rip off to make quick money, just like Lipiflow. But I began to understand the biology of it and it started to make sense. Apparently, the light around 500nm gets absorbed by the hemoglobin in the blood, which overheats the small telangiectasia in and around the eyelids, so they close. And once they are gone, they can no longer feed the meibomian glands inflammatory mediators so the glands will start working better. And I read all about this treatment and how Dr. Toyos discovered it. But unfortunately, there are no doctors in Europe that follow Toyos’s procedure. However, one doctor in Reims, Dr. Malbrel, had apparently worked together with E-SWIN, one of the biggest manufacturers of IPL devices, to design and calibrate a device specifically for MGD patients.
I went to see this doctor Malbrel and I had one wonderful IPL session. He confirmed almost everything I already thought about MGD and what was causing it to me and said he sees a lot of good results with his IPL device. However, Reims is a four hour drive for me and he advised me to contact a dermatologist in the area. Now there is a very professional dermatological practice in my town, and after hearing my story and contacting the necessary people to confirm it, even French ophthalmologists and colleagues of Dr. Malbrel that had worked with IP, they said it might be worth a try to do a series of laser treatments. They just sold their last IPL device, so they couldn’t offer exactly what I wanted. Most dermatologists these days are switching to laser as it’s more effective. But this laser works at around 500nm, which is the necessary wavelength. So long story short, I tried my first treatment two weeks ago and I’m having another one next week. But no real improvement yet.
But just after my IPL session in Reims, I also went back to Duesseldorf and I had some very good news. My lipiview score had improved from 40 to almost 50 in both eyes and my TBUT was now 5s on the left (still 4s on the right). My glands were definitely open and clear, fluent oil was coming out easily. This news confirmed my presumption that the mechanical part was effective and that I now need to tackle the inflammation of my eyelids through IPL. And for the first time, my subjective symptoms have also improved somewhat. Not much, but I can go to some classes now. For me this is a big change compared to the previous semester, when I couldn’t go to classes at all. And I’m gradually starting to reintroduce some other things in my life.
But TBUT scores of 5 are still very low and I still have serious discomfort every day. But at least I have some hope now. And hopefully things will get better from here on.
So that’s my story up till now. I probably left some things out. For example, I also tried azithromycin drops a while back, but I couldn’t tolerate them. But overall, I think that’s about it. I apologize for this very long post, but I had to summarize 3 years of suffering and all kinds of treatments. And I didn't even get into the effects of dry eye on my personal life. It has been a very long and rockey journey so far. But I hope this will help some of you guys with MGD. And please, feel free to ask me anything or to start a discussion about IPL/probing/lipiflow… as long as it’s on topic.
I started a thread about my experience with probing and lipiflow a while back. But it quickly became quite chaotic so I thought I'd start a new one. Also, I feel like my understanding of MGD has progressed a lot and I don't necessarily back all of the statements I made in the previous thread anymore. And I wanted to give you guys an update on my progression too.
I apologize in advance to those who already know me a bit, as I’m going to start from the beginning.
So here goes:
I'm a 20 year old engineering student from Belgium. At the age of 15, I started wearing contacts. I could wear them all day, every day, without problems. But after a bit more than a year, my eyes started to get dry towards the end of the day. Until I could only wear them from time to time and eventually not at all anymore.
At that point, I just thought that I had abused my eyes by wearing them too much. My thinking was that my eyes were 'dried out', whatever that meant, and that I just needed a break. But my contact lens intolerance didn't go away as the months progressed, so I went to see an ophthalmologist (just at the local hospital). He didn't have any answers for me and he just set me on artificial tears and said that I should swap contact brands if necessary. Surprise, surprise, no change. But heck, I thought, if that's my only problem, then so be it. I had almost no other symptoms.
But a year later, that all changed when my eyes began to feel dry even without the contacts. I felt overwhelmed and angry. But I was still convinced it would go away. Of course it didn't, although I still had more good days than bad days back then and even a few weeks without any symptoms. On one particularly bad day, I went to another local ophthalmologist, and he set me on steroids for a few weeks. That seemed to help, but only for a short time.
I decided this was getting out of hand so I made an appointment at the university hospital in Leuven. If those people can’t solve my problem, then no one can, I thought. I saw two different professors specialized in tear ways and ocular surface but neither of them could give me a proper diagnosis, let alone a treatment. In the mean time I had thoroughly searched the internet for a cure myself. And I quickly discovered cyclosporine, azithromycin, IPL, probing etc... But these people at the hospital hadn't heard of a single one of these treatments. It seemed to me they lagged behind at least 10 or 20 years. They just set me on vitamin A ointments, steroids again, anti-allergetic drops etc... None of this was helping and I was getting more desperate as with every month passing, my condition worsened. By that time I was 19.
So my next step was to go to Quinze Vingts in Paris, the most prestigious ophthalmology hospital in France, to see Dr. Baudouin. I didn't get to meet him, but one of his doctors did all kinds of tests and eventually diagnosed me with evaporative dry eye. He didn't bother to look at my eyelids or meibomian glands much though, but just prescribed an anti-allergetic drop and a steroid (again!) If that wasn't working, I could come back and he would prescribe cyclosporine.
I had to take those two drops for about 6 months, but halfway through I realized this wasn't going to do a thing. I started getting interested in new treatments like probing and lipiflow but I thought America was the only place to get that done. However, I learned from someone on this forum that Dr. Geerling at the university hospital of Duesseldorf offers these treatments.
So only a few months after I went to Paris, I now sat in a chair in Germany. They had Lipiview (to measure the thickness of your oil layer) and a keratograph for meibography, staining etc… They looked at my eyelids and for the first time, somebody tried to express my glands. There was nothing coming out. And for the first time in three years, my condition was diagnosed: I had MGD. They put a whole sheet of test results in front of me. My TBUT was 3 or 4, (under 10 is dry, under 5 is very dry) and my lipiview score was 40 on the left and 20 on the right (under 75 is bad). Apparently, my glands were closed by tissue and they proposed to perform gland probing, followed by Lipiflow. At that time, I was also taking doxycycline.
I was very excited about this treatment and my diagnosis. In fact way too much. Because my subjective symptoms did not change one bit. I felt devastated. So many people had some kind of relief, why not me? After three months I had to go back for a checkup. This time I got to see Dr. Geerling himself. They did all the tests again and despite my lack of subjective improvement, there was still some good news. The lipiview score for my right eye improved from 20 to 40, although my left eye stayed the same (also 40). But more importantly, my glands were open and working and when Dr. Geerling put pressure on it with a q-tip, he said he could see oil coming out of them.
He was honest with me and said he wasn’t too sure how he could further improve my situation, but he set me on cyclosporine. He also said that my eyelids are very red and inflamed on the inside.
So I ordered some boxes of Restasis from America and started this treatment with mixed feelings.
How was it possible that my eyes felt exactly the same even though my glands had opened?
I felt that something was missing. And I remembered what Dr. Geerling said about my eyelids and searched the web some more. And I stumbled across IPL. It had never crossed my mind that this could actually help. To me, IPL was just another expensive rip off to make quick money, just like Lipiflow. But I began to understand the biology of it and it started to make sense. Apparently, the light around 500nm gets absorbed by the hemoglobin in the blood, which overheats the small telangiectasia in and around the eyelids, so they close. And once they are gone, they can no longer feed the meibomian glands inflammatory mediators so the glands will start working better. And I read all about this treatment and how Dr. Toyos discovered it. But unfortunately, there are no doctors in Europe that follow Toyos’s procedure. However, one doctor in Reims, Dr. Malbrel, had apparently worked together with E-SWIN, one of the biggest manufacturers of IPL devices, to design and calibrate a device specifically for MGD patients.
I went to see this doctor Malbrel and I had one wonderful IPL session. He confirmed almost everything I already thought about MGD and what was causing it to me and said he sees a lot of good results with his IPL device. However, Reims is a four hour drive for me and he advised me to contact a dermatologist in the area. Now there is a very professional dermatological practice in my town, and after hearing my story and contacting the necessary people to confirm it, even French ophthalmologists and colleagues of Dr. Malbrel that had worked with IP, they said it might be worth a try to do a series of laser treatments. They just sold their last IPL device, so they couldn’t offer exactly what I wanted. Most dermatologists these days are switching to laser as it’s more effective. But this laser works at around 500nm, which is the necessary wavelength. So long story short, I tried my first treatment two weeks ago and I’m having another one next week. But no real improvement yet.
But just after my IPL session in Reims, I also went back to Duesseldorf and I had some very good news. My lipiview score had improved from 40 to almost 50 in both eyes and my TBUT was now 5s on the left (still 4s on the right). My glands were definitely open and clear, fluent oil was coming out easily. This news confirmed my presumption that the mechanical part was effective and that I now need to tackle the inflammation of my eyelids through IPL. And for the first time, my subjective symptoms have also improved somewhat. Not much, but I can go to some classes now. For me this is a big change compared to the previous semester, when I couldn’t go to classes at all. And I’m gradually starting to reintroduce some other things in my life.
But TBUT scores of 5 are still very low and I still have serious discomfort every day. But at least I have some hope now. And hopefully things will get better from here on.
So that’s my story up till now. I probably left some things out. For example, I also tried azithromycin drops a while back, but I couldn’t tolerate them. But overall, I think that’s about it. I apologize for this very long post, but I had to summarize 3 years of suffering and all kinds of treatments. And I didn't even get into the effects of dry eye on my personal life. It has been a very long and rockey journey so far. But I hope this will help some of you guys with MGD. And please, feel free to ask me anything or to start a discussion about IPL/probing/lipiflow… as long as it’s on topic.
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