Terrien’s Marginal Degeneration (Video)
This video shows an eye with Terrien’s Marginal Degeneration. This is when the cornea thins at the edges toward the limbus. The etiology of this condition is not understood, but classically these eyes present with a band of thinning with a step-off toward the center. Also, you can see white lipid deposit, vessels growing into the area.
In this video you can see the area of thinning at the limbus. You can also see the sloping central edge that spares the limbus. This eye has no injection and the patient was without complaints.
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I suffer from Terrian’s Marginal Degeneration I am a 27 year old Female. who has suffered from this condition from the age of 21, not knowing much about this condition I as doctors are telling me very little I would really like more info sent out to me. I am a 1 in a billion case so I am told, and I also Have scleritis in the eye aswell. I found this page informative. Please contact me if you would like more info.
hello there,
my name is vijay and i too is suffering from b/l terreiens marginal degeneration for past four years. spectacles dont work for me since i have very large degree of astigmatism. rigid contact lens are too painful to wear. now i am with boston scleral lens giving me good vision but my outdoor activities are limited.
is there any known treatment for this disorder. i ve told by a famous corneal surgeon from singapore professor tan that they have advanced surgical techniques to treat this disorder to retain good vision and make the cornea stronger.
if you have any opinion and suggestions please reply my mail. regards , vijay
I AM FEMALE 33 YEARS OLD AND THE DOCTOR TOLD ME THAT I HAVE TERRIEN´S MARGINAL DEGENERATION. AT THIS MOMENT I DONT HAVE ANY VISION PROBLEMS BECAUSE I AM IN THE BEGGINING OF THE DISEASE BUT I AM VERY NERVOUS AND I FEEL DEPRESSED. I AM SCARED OF MY FUTURE, I DONT KNOW IF I COULD BE BLIND. ALSO I HAVE VERY LARGE MYOPIC SINCE I AM TEENARGER.
I HOPE THERE IS A SOLUTION FOR US
Ana, I have had Terrien’s since I was in my twenties (maybe longer). I am now 57 years old. It hasn’t progressed much at all. Once in a while I will have floaters, but that’s about it. I do have an astigmatism in one eye too.
In the beginning my ophthalmologist did not want me to wear contacts, but then he changed his mind. I did fine with them. I wear mainly glasses now because I need readers too. But he told me to never have Lasik surgery because that could really mess up the corneas.
I hope this puts your mind more at ease.
VIJAY, WHAT DO YOU MEAN YOU HAVE LIMITED VISION FOR ACTIVITIES OUTDOORS?
WHEN WERE YOU DIAGNOSED AND HOW MANY YEARS THE ILL TOOK TO DEVELOPE THE LARGE AGSTIMATISM?
HAVE YOU THOUGHT IN LAMELLAR SURGERY?
ana,
i ve been diagnosed with terriens marginal degeneration for last five years. initially the astigmatism wasn very bad but since it gradually progressed my vision can no longer be corrected with spectacles. i have a astigmatism of 8.00 diaptors which is very extreme.
rigid lens give good vision but it is very irritating and painful and falls off. now i am with boston scleral lens, it is giving me good vision but maintaining caring is a difficult job. also, the city where i live is very dusty and polluted and my eyes get tired and red even with the scleral lens.
yes, you are right i am thinking about the lamellar keratoplasty. i want to try this on my right eye first. at singapore they suggested annualr lamellar keratoplasty for my condition. do you have any further informations regarding lamellar grafts. you can send me emails at vijaymi6@hotmail.com or call me at +977- 9851013932 thanks.
Hi
I was finally diagnosed with Terrian’s about three years ago, but symptoms were first noticed when I was thirteen. It can be a very slow moving disorder, it is also hereditary. Because it is so rare a disease there are not many specialist or knowledge about the disease. From what I’ve been told, regular contacts are not an option. They can speed up the progession of the disease. The best that I have found is at University of Rochester Eye Institute, but from what I understand from their website you have to be referred to them.
Hi
I have been told by the doctor I have thinning of cornea.I’m 36 years old, I’m so worries I will lost my my vision oneday.I don’t know what to do.I so depressed……
Thank you
I have it and it is progressing quickly. The first year vision went from 20/20 to 20/60. That was 3yrs ago. I know I wont be driving much longer. Right now its like looking through wax paper.
My son (age 18) was diagnosed with Terrien’s at the age of 12 in both eyes. To date the disease hasn’t progressed or changed. I’d like to receive any information or new information as it becomes available. Thank you.
I have had Terrien’s ulcer for over 22 years and this is the first time that I have ever found anything on the web. It has been a terribly painful and often times debilitating disorder. I too went from 20/15 to not being able to read the “E” at the top of the eye chart. I was hit directly in the eye with a racquetball when I was 16 and Dr. Arlo Terry was the first to definitively diagnose me after visiting nearly a dozen corneal specialists back in the late 80’s and early 90’s. I am interested in talking to others with Terrien’s ulcer, please email me at mikeg_mrclean@yahoo.com.
Me too! I have even had to miss work because the inflammation was so bad! Sensitivity to light, watery eyes, but feel super dry and burning! It’s terrible 😞
Diagnosed in the mid 90’s. One eye has it the other at this point is fine. In the bad eye I can barely make out the big “E”. Have searched and searched for a solution. Doc’s say you have a good eye, deal with it. very frustrating
I’ve had Terrien’s Marginal Degeneration since 1981.I have seen many doctors over the years and to my dismay many of them are not knowledgable about the disease. However, recently my current doctor who actually named my disease (yeah!) informed me that probably with stem cell research going on,it was quite possible that in about 5 years they would be able to use my healthy corneal tissue and be able to duplicate it and have a corneal transplant. This gives me hope. Also, look at UC DAVIS EYE INSTITUTE they are pretty advanced with eye diseases.
I was diagnosed with Terrien’s and in October of 2009, I had a corneal transplant. 5 weeks ago, I was told that my transplant was in failure and that I would be needing another transplant. I also was told that having a second transplant may result in a higher rate of rejection and/or failure. My doctor was also just diagnosed with cancer and is now in treatment and so I have to continue my treatment with a new doctor. Fortunately, the new doctor that I will be seeing this Friday is the brother of my orginal doctor and will be consulting with him. My fingers are crossed.
I have some patient with terrien’s disease. First I am not sure that is Terrien’s disease, but after looking at the book and the clinical sign, Iam sure that is Terrien’s disease. I have experiance only if the patient complain with the disease such as Blurr, red eye, or itching, so I am cure with Metilprednisolon eye drop, alergic agent eye drop, and lubricans
after years of searching forinfo on terriens, finaly, i find this site.
originally informed that this conditon would have me blind by the age of 50-55 (which thankfully, has not yet happened),there has been a marked decrease in my vision. However, at 64 yrs of age, am still able to read with the use of bifocal eyeglasses.
can’t say that there has been a lot of pain associated with my terriens…although when younger, from time to time one or the other of my eyes would become very inflamed, sensitive to light and quite painful. this never ocurred in both eyes at the same time, but once, it hit my left eye, then moved to right eye when the left eye had been cleared up.
it was actually the inflamation of one eye after a weekend skiing trip at age 13which led to my original diagnosis. there was some thought at the time that skiing on a sunny day may have agravated the problem. have never known wether the skiing was the catalyst or not, but every time i skiied when the sun shined, the inflamation would return, which resulted in my giving up skiing.
my father was discovered to have this condition about 10 yrs after i was diagnosed, and one of my nephews was also diagnosed at about 14 yrs of age.
neither of my brother’s have shown any sign of the condition and since both are over 60 now, it would appear they don’t have it, but one brother carries the marker.
i’m female and 64 yrs of age, so have been dealing with terriens now for over 50 yrs.
I’m a 42 year old female! I was finally diagnosed years ago! I do have some Visio problems, but mostly inflammation and it’s very painful! At least once a month. It will be in one eye, it will clear up. Then it moves to the next eye! It’s so frustrating! The only way I can get any relief is with steroid drops! I’ve even had to miss work because of it, it’s terrible!
I have Terriens marginal degeneration in my left eye. I have had this condition since I was about 21 years old (33 as of this posting). I will describe what I have learned about it from doctors and experience.
If you have Terriens and you are like me you won’t have any actual problems. My vision (until very recently) was 20/20 in my left eye. The only problem I actually had are the fact that my cornea was very thin.
What does Terriens feel like? Mostly like nothing, occasionally I would feel a dull aching in my eye, and I would notice more of a whitish /yellow blob that was slowly growing around my eye over time (over the course of months even years). Gradually a depression or a sort of a thinning will develop and spread around the outside of your eye. You likely will not feel any pain.
Some Advice:
DO NOT RUB YOUR EYES, you can rub them a little bit, or try to get things out of them, but do not rub them too much, excessive rubbing of your eyes can perforate your cornea. This actually happened to me, the perforation was minor, and it healed itself after a bandage contact lens was applied.
Avoid or decrease your alcohol consumption, alcohol aggravates this condition. I was told this by doctors and experienced an aching eye after binge drinking on the weekend.
Avoid any blows or trauma to your eye. Your eye is going to be VERY fragile, minor blows to your eye can rupture it. This has happened to me. I had a blow to my eye and it ruptured. I had to get 2 operations to fix my eye. The last operation was a partial cornea transplant which has fixed my eye. Now the Terriens eye is much stronger than it was before.
Be aware that if you have terriens you must protect your eyes from trauma. You don’t have to hide in your house and not do anything, but you may want to wear safety glasses/goggles when you play sports etc.
I hope this helps you. Good luck, and be careful!
Also I wanted to point out (which I did not in my earlier post) that as far as I know there is no cure and no treatment for Terriens. Many of the doctors I have talked to do not actually know what it is. There is some speculation that Terriens is an auto-immune disease. Meaning that your own immune system is attacking your eye. IF this is the case there is nothing much that can be done because you need your immune system to live. So it seems that you will have to put up with the Terriens and be careful with your eyes.
Hi, currently I am 23 years olds, i was diagnosed with Terriens by the age of 13, I have astigmatism and myopia as well. I have read alot from the diseases and have visit many doctors, all of which agree this is an extremely rare condition. The comment left by Paul, covers almost all the important facts about this disease, however I would add the following advises:
1. You should be careful with smoke, dust or any type of polluted air, because it irritates your eyes and causes a lot of pain. (At least thats what happens to me most of the time)
2. Be careful not to rub your eyes during your sleep, try using some protective goggles during your sleep, if you wake up without them you might be rubbing and hurting your eyes while you sleep. Last week, i have a mini perforation because i slept leaning over my sick eye o rubbed it, I had to keep my eye closed during a whole week, with a patch, until it healed, it was extremely painful.
Other than that, i have been told, you can live pretty normal with this disease, just keep in mind you have to be really really careful with your eyes.
I was diagnosed with Terriens Marginal Degeneration about 10 years ago. I am 32 now. I saw several eye doctors before I found one that could tell me what was wrong. I have had repeat flare ups in both eyes (mainly my right) for the last 10 years. It is now visible without a magnifying glass to see the damage to the cornea in my right eye.
The pain for me when I have a flare up is my eye burns, feels like it has sand in it and is extremely light sensitive. There is not much relief for me when I have a flare up. My eye doctor told me to keep my eye shut as much as possible when its flared and that seems to help some. Luckily when its flared up the symptoms only last a few days and then slowly it goes back to normal (or at least not painful and no white cloudiness on the outside of my cornea).
I have been using one drop of Alrex 1% in both eyes for most of the 10 years. That is suppose to help keep the flareups at bay but when it doesn’t and I get a flare up I increase the drops to 4 a day. Then I slowly decrease the drops back down to one drop a day (this takes weeks to a couple months). I have been seeing my eye doctor every 6 months unless I have a flareup and then I see him more frequently to make sure the inflammation is gone.
I have been told this disease could make me blind one day but that if I continue to see the eye doctor every 6 months to once a year then I might be able to catch a perforation before it happens. I was told they could then do a cornea transplant. I was also told I am in the early stages and it could get much worse. That scares me.
I have notices several things that seem to increase the chance of my eye flaring up: bright light (mainly the sun) so I always wear sun glasses during the day, air blowing in my eye and if I get something in my eye and it really irritates it.
I was diagnosed with Terriens Marginal Deg. about 25 years ago. I am female, age 54 now. It started in my right eye and I have severe astigmatism. A few years later, it started in my left eye also. The degeneration is very, very slow so I have been able to function normally with knowing I have compromised vision esp. in my right eye. I am very night blind when stepping from the light into the dark. My eyes don’t adjust quickly. Little is known about Terriens. I have been told it is not genetic, not curable and very rare. I see the only corneal specialist in my state and he only has had one other Terriens patient.
However, here’s a shocker. My sister in her mid sixties has just been told by her eye dr. that she has the start of Terriens. NOT GENETIC??? We will go to the specialist together this summer and confirm whether or not she has Terriens.
I am interest in learning what you are doing to restore vision. I have been told I am a good candidate for a contact lens for my bad eye. Any one have experience with them?
do you guys know any doctors that can help me i am almost bling
After being misdiagnosed several times as a child for the pain and inflammation I was experiencing frequently in my left eye, I was finally diagnosed with Terrien’s degeneration at the age of 11. I am now 18 and instead of having flare ups about every three weeks, I now have them maybe every three months and they are much less painful than they used to be. I was told I will need a cornea transplant around the age of 50.
Try Bostonsight.org, I have recently been diagnosed with Tarrian’s and my corneal specialist has referred me to them.
Hi Im 14 I was diagnosed with Terriens marginal degeneration when I was 12 but had it since I was 9. I have had a few painful flare-ups but they end soon. I have 20-40 vision and a astigmatism. What scares me is that I know that it can only get worse and so I was wondering how hard it would be to get a corneal transplant from what I read it isn’t too difficult to get a cornea and its a fairly easy procedure, not like a kidney transplant if anyone has had a corneal transplant can they please email me about how it affected their eye, if it was succsesful or not. I really do not want this to affect my life and sports. email me at gabe.sullyitz@gmail.com
Also I read that contacts speed up the condition is this regular contacts or all contacts ?
I was diagnosed with this in one eye in 1997 I still see pretty well in that eye. In 14 years it has progressed little. It has not really effected my life other than my initially stressing myself out over it. The eye is a little more sensative and is earatated some by dust and rain. It helps to rinse eye now and then. I guess a good cry would work too. I go from month to month and dont really think about it much. I would think there is some promise in stem cell treatments but I havnt heard anything about it. Love first, Enjoy life
Steve
I am 28- diagnosed with Terrien’s Degenration. Unfortunately I have an inflmatory case where i get self healing PUK attacks in the eye every 10-15 days. Cyclosprine treatment with oral and topical antibiotics did not help from the past 2 years. Eye has regular discomfort where doctors don’t have a clinical explanation of the discomfort. Lubricants like Refresh Plus don’t really help, as they increase the foreign body sensation when used more than once or twice.
Only thing that reducses the discomfort in the eye is dexamethasone, but I had only been given one injection of it during a sever asthma attack. Eye doctors are not willing to prescribe it regularly because of the side effects. Am been taking low end steriods (drops) for as and when needed bases when I get the infiltrate (puk) attack in the cornea.
My name is Sandy and my originally diagnosed was terrines kirakatonis. I went over my symptoms with the Ophthalmologist during my week long flare ups who advised me that I had an eye infection, fortunately after my forth flare up and a decrease in my vision from 20/20 to 20/60 over one year he referred me to Weimar Eye institute, who made the diagnosis of Terrines. I now have it in both eyes and my vision is 20/40 with glasses. I think that I am now stable and I hope to keep my vision and continue to drive for the rest of my life. I have learned to live with my disability of decreased vision. I too have been looking on the web for a site that had other people that suffer with this disease. It is good to have other people who understand the pain associated with the disorder and the disease process. It was very hard to find an Ophthalmologist who understands the disease, but I finally found one that has understood the disease process.
My name is Rose and i have been diagnose with having Terrians Marginal Degeneration disease, I have flare ups consistancey and it’s in both of my eyes.When i was six years old one day i was at school fliping upside down on a rail, i saw out of both of my eyes these bowingarrows like three demention i never said anythang to my parients.the first time ever going to a Dr. i was treated for having allergys,as years went by and not being treated my eyes just got worse. when i was 39 years old i started going to eye specialists i’ve been to like twelve of them.In the year of 2010, finaly a specialists told me i was borned with it. I’m now 53 years old i still fight with this pain,eyes beening red,and have headaches, and the brown of my eyes are changing.im still looking for the right specialists to help me, with my eyes can anyone help me out it would be helpfull. ( THANKS)
I was diagnosed with Terrien’s in 1978 by Dr. Perry. I had a partial cornea transplant in 1978. Dr. Perry from the University of South Florida did the surgery. For a short time it helped my vision, but quickly it got worse.
The really cool thing is that since the surgery, I haven’t continued to have the degeneration of my cornea. It’s fine! I had a full cornea transplant in 1995 by Dr. Stephen M. Hamilton and Dr. Alan Kozarsky at Piedmont Hospital in Atlanta. To this day, though my vision isn’t good in my left eye, each time I return to Dr. Stephen Hamilton, he says my cornea looks great shows no sign of degeneration. YAY!
I am a photographer and following my passion to grow a business – http://www.wingdreamer.com My eyes are sooooo important to me! Don’t give up hope!
I too have Terriens. I have had this degeneration for about 10 years. My doctor is Bert Bertram with The Eye Guys/Augusta Eye Surgeons. He says that I am a small handful of people who has this. He says there is NO cure and gives me Fluorometholone 0.1% eye drops when it flares up. They don’t really help much. I too have the redness, sandiness feeling, sunlight bothers it, tears up, nasal drainage, eye pressure, and whiteness around the cornea. September, I had Catarac surgery in my Terriens eye and have had 4 RX’s changes and known have been right since. One of Bertram’s associates said I should start wearing contacts. They can’t get that right. Either the fit or the kind (hard, semi hard, or soft. Every time I get my eyes checked, they get worse. I too am afraid I’m going to go blind. Is there any hope for a cure or to help? Desperate and very depressed. My job depends on my eyes. Please help. bgooddawg1@yahoo.com
I am 53 years old.
i am suffering from terriens marginal degeneration . their is perforation(neo vascularisation) in my left eye with lipid deposition and have sight of -5 cylindrical which the docor said is high and i am worried about its treatment and since there are blood vessels in eye i want to know the treatment options.
i am suffering from terriens marginal degeneration . their is perforation(neo vascularisation) in my left eye with lipid deposition and have sight of -5 cylindrical which the docor said is high and i am worried about its treatment and since there are blood vessels in eye i want to know the treatment options.
i also found that their is a answer for high perforation case where sight is threatened that is –( boston keratoprosthesis)
called boston kpro
Hi just been told I have it also, so any else in the UK with it, would be good to know who the best Docs are here to see, as its taken my lot 2 yrs plus to work it out, and they had to use google.
I have been able to restore my patients vision by fitting them in GP scleral lenses. I have fit the Maxim 7 by Acculens and got my patient from fingering counting to 20/25.
The first line of treatment i use for redness is zoline eye drops and it is instantaneously reduces redness and if again redness reappear i use lotepred (use with caution as it is steroid ).
would Crosslinking not help?
The terriens i have mentioned above has been clarified as occured due to ocular rosacae which causes frequent redness every other day and the white border type vascularisation around my cornea( black part) .. Take aggressive treatment for ocular rosacae from top hospital near ur locality as it is sight threathning .
Use genteal gel for redness ( very effective)
Your treatment options for irregular and/or high astigmatism from corneal degenerations include RGP contact lenses, custom soft contact lenses, hybrid lenses, and scleral lenses, if eyeglasses no longer help. corneal transplant should be reserved for last resort only. Find a contact lens doc experienced with irregular corneas. Many visits may be needed, and long term follow-up care is important so try to find someone close by. Good luck and remember to be positive; irregular cornea is generally just am inconvenience, not a real danger.