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Terrien's Marginal Degeneration - rare eye condition

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Hello everyone,

My name is Nastassja, I am 25 female and I am writing in this forum since I am a bit desperate. It seems that I have a very rare eye condition - called Terrien's Marginal Degeneration or Morbus Terrien in German.

In a routine check in 2008, my eye doctor realized that something is not right with my eyes. Firstly, they thought it is a Pterygium - however after going to many other doctors, they called it a Pseudo Pterygium. I have it on both eyes where the conjunctiva is growing over the cornea. Last year in 2012 they said it it could be Terrien's Marginal Degeneration where the cornea is thinning and the conjunctiva is growing over it to protect it.
2 weeks ago, I went again to the hospital - they were telling me I have Rosacea in my eyes. However, I do not believe this since I do not have a permanent redness in my eyes. However, it seems to become worse.

In generel my condition is as follows:
Just from time to time, if I am very tired my eyes become red and the area with the thicker conjunctiva even more. My eyes are always very dry - I need to have eye drops 4-5times a day. On top of that, on one eye, there is already a little cyst which you can see when looking in my eye.

The doctors do not know what to do - and I dont either. I just wanted to know whether anyone of you have heard of a similar case with this rare condition.

Many thanks, Nastassja
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replied March 4th, 2012
I am suffering from Terriens degeneration in my left eye from 3.5 years. It took about 1.5 years for doctors to give me a proper diagnoses and confirm the disease.

What you say is typical with advance stages of terriens. I however have a different variant of the disease.

I regularly get PUK (peripheral ulcerative keratitis) attacks. The severity of the attacks varies every time. Some times I get mild discomfort and some times they are extremely painful extremely painful to the point I cannot open the eye at all. By regularly I mean every 10-20 days (twice atleast a month) for the past 2 years consistent. Some time I get a break for a month or two (once or twice a year), with very minor attacks, hair line infiltrate but then it starts full fledge and regularly again.

Besides this I have 24x7 regular discomfort in the eye, eyelid, cornea, where doctors cannot explain a clinical cause. About a day or two in a month my left eye feels like normal like my right eye. Doctors assume the discomfort is because of low grade inflammation, unevenness of the cornea which is causing dryness and bunch of other problems in the eye. They are not sure, so all treatments are trial and error only.

I had been to Germany for consultation. I meet Dr. Thomas Reinhard, Freiburg University Medical Center who confirmed my condition as "Inflammatory terriens marginal degeneration" or Terriens degeneration with an inflammatory factor.

I have some research documents which took months to dig out from various institutions regarding this disease, I don't mind sharing those with you.

As far as I know, this condition is extremely rare and doctors don't know the etiology or mechanism of the disease, plus cure is a far fetch word, there is literally no treatment for this.

Depending on your condition some sort of surgery may be required. You need to see a cornea specialist and get proper diagnoses and surgery (if required) done. For me I have been told to just sit and keep waiting till my entire cornea gets uneven and damaged due to the PUK attacks, they will only then intervene and consider some sort of surgery.
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replied August 23rd, 2012
I too have Terrien's Marginal Degeneration (TDM) in the my left eye. Was diagnosed in the mid 90's and has reached the point a perforation is possible. I was informed about a "lens" that may help by Dr. DeRosa and introduced to a "Boston Scleral Lens" as of August 16, 2012 by a Dr. Wilcox (Hayes, VA. USA). This an alternative to surgery which I am not ready for. Prior to the lens with glasses (maxed out) 20 800. After the lens was on I went to a 20 30.
I have been told since my diagnosis:
1. Glass (no contacts) will work for a while.
2. Glasses will no longer be effective
3. Surgery

In regards to Surgery. I only want it if there is no other option and I will be blind (which I am almost now) in my left eye. Two options are available that I am aware of (which is how I came to this site)

1. Cornea replacement. Which will take a year or so to heal from and could get infected and will lose the eye completely. And you will more than likely be on medicine for the rest of your life because it is a foriegn body within your body.
2. Synthetic cornea. Lack of better words, fill in the pot holes. Healing time and surgery is far better and risk of infection is lesser then full cornea replacement. Will be on medicine for the rest of your life because it is foreign material in your body.

Hope this helps.
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replied October 19th, 2012
Terrien's Marginal Degeneration
I also have Terrien's Marginal Degeneration in both eyes. My left eye is worse than my right eye. It has caused extreme astigmatism and I need to get new lenses for my glasses every year. The scarring on the cornea of my left eye is now happening in front of my pupil and is blurring my vision. What you call cysts sound like cornea scarring.
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replied January 3rd, 2013
Is it Terrien's or Something else
Hi There

I have TDM As well. I was diagnosed back in 98 or so. There is nothing you can do to stop the progression at all. I have learned to live with it. I have been seeing one of the worlds leading cornea surgions and monitored here. There are some types of sterioids I can take but usually inflame it more. I find when in a (flare up) red eyes burning and the feeling like something is in your eye sleep calms it down a little. The progression with my condition has been fast and painful. I am very close to loosing my drivers license. Over the years I have perforated 3 times. It has been a pain however there is more to this disease than meets the eye. This is an autoammune disease. Do some reserch on you family backgrounds. Is there M.S. or Rhumatoide Artheritis or Lupis in your family. Terrien's can be just a symptom of something more going on in your body. Me personally My mothers side of the family is just littered with these conditions.

I have been exhibiting other symptoms now over the course of a couple of years and have been fighting with doctors to get checked for these conditions. Test for Lupis came back negative as well as Rhumatoid Arthritis but the real fight was getting in to the MS clinic for a MRI as my sypmtoms resemble MS. This should happen this month. Something to think about.
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Thanks for your patience!

replied March 1st, 2013
I am a 32 year old female suffering from TMD also I was diagnosed at the age of 26 though started seeing specialist from the age of 21 I have flare ups constantly and the condition is in both eyes, I suffer from arthritis although it only shows mildly in my bloods and is not always present in my bloods. I have also been told to wait for surgery although I have lost my eye sight in my left eye and my vision in my right id also deterating in my right eye. My focus continually changes glasses haven't helped. My I am looking at setting up a group on facebook if u are interested in joining please message me I will being calling it Terriens Marginal Degeration support.
I am having trouble typing on here as its to small for me to see. So please add this group i am very keen to find out how everyone progresses. I am from melbourne vic australia.
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replied August 12th, 2013
My 45 yr old son has Terriens. Transplants have been rejected. Disease now attacking other eye. Has anyone learned of any successful treatments?
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replied October 9th, 2013
i am 19yrs of now and i have tmd, it grows when eyes are red, gets worst during night. my doctors have suggested only wearing lens as of now. but i have white layer around my eyes which scares me . i am changing my spectacles every 3 months. hope any one finds any solution..
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replied February 24th, 2014

I'm 50 now and have had inflammatory TMD for about 15 years. About 10 years ago I went on 100mg of doxycycline (same drug used to treat acne) a day. The length and severity of the inflamations reduced. My eyesight (while not great) has stabilized. I went off the doxy for about a month and some inflamation is back. There is some reference to doxy trials and corneal thinning on the web, however nothing looks definitive. Yet, it has given me some relief so it may be worth a try. Also, make sure to keep your eyes from drying out - especially at night.
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replied April 7th, 2014
Terreins Marginal Degeneration
I, too, suffer from TMD in both eyes, as well as chronic dry eyes. I feel fortunate as I was just fitted with a soft lens contact and I can finally see distances. It took about 6 - 9 months to get to this point, and I was ready to give up. I could not wear the scleral lenses. I have worn soft lenses 24/7, use an antibiotic drop twice a day, & preservative-free sensitive lubricant eyedrops at least every couple of hours. While not perfect, I finally have comfort and vision.
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replied July 19th, 2014
Hi! I am 34 years old and I have had Terrien's since I was 24. I apparently have the worst case that any doctor has seen. Both of my eyes are affected, and I have lost most of my vision. My eyes are extremley painful often, and nothing hekps with the pain. But, through trial and error, I have found a way to break the ibflammation cycle - by not eating gluten or dairy. I have been gluten free for almost 2 years and after I quit the gluten I noticed a big difference in my inflammation. But it was not perfect so after doing some research I read that gluten and dairy sensetivities go together sometimes, I quit the dairy. That stopped the horrible inflammation ans pain that went with it. I only wish I would have done this years earlier, because my corneas are ruined. Three weeks ago, I had my first cornea surgery, but I cannot see yet out of that eye. In six months I will have my second and hopefully I will see/ Then I get to do it again in my other eye.
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