Cataract surgery and map dot dystrophy

Posted by bobr1040 @bobr1040, Sep 4, 2020

I have map-dot dystrophy in both eyes. Last September I had to have my right eye debrided and the epithelial cells removed after a laser procedure. It was one of the most painful experiences I have ever had. I now need cataract surgery in my left eye and asked my ophthalmologist about having a corneal specialist do the surgery because of the potential problems with my dystrophy. He said that he would irrigate the eye more and make sure it stayed moist during the procedure and that a "general" ophthalmologist with a lot of experience doing cataract surgery would have a better chance of not having a negative outcome with the dystrophy than a corneal specialist. He said corneal specialists were good with corneal transplants but they really did not to as many cataract surgeries as an ophthalmologist with a large cataract practice. My Dr. is no longer doing surgeries but his partners are. Does anyone have comments on his advice or experience with this issue. I realize that I might have problems with the dystrophy when I have the surgery but I just want to hedge my bets with the best choice of surgeons.

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I had Epithelial basement membrane corneal dystrophy and had Superficial Keratectomy surgery performed on both eyes to remove the cells. I have a high pain tolerance and managed with Ibuprofen. Both eyes had contact bandages placed over the cornea. I was very tired for several days. The worst part of the surgeries, which no one prepared me for was messed up vision. I am farsighted and wear glasses. After the surgery, ( one eye at a time, one week apart), the difference in astigmatism between the 2 eyes drove me crazy. Also the glare off of objects was very scary. No one ever said anything about the glare! Then after the 2nd surgery, I had great near and distance vision for about one day. Then that slowly changed. After 3 weeks I finally went to a 24 hour eye glass place, had my eyes refracted and got 2 pairs of glasses (one for reading and one for distance). The surgery center didn't want me to get glasses, kept telling me that things will get better. The headaches and the dizziness from seeing everything blurry was off the charts. I was totally dependent on my husband (who was and still is a saint) for everything. My sight kept changing, and by week 7, I was able to wear a 12 year old pair of glasses. Without glasses, I couldn't go for a walk around our neighborhood.
Then I had cataract surgery, 10 weeks after the SK surgeries. The cataract surgeries didn't go well. My eyes took forever to heal and I had the same old line, just wait for things to heal. 10 months latter and I am on to my 4th pair of glasses after the cataract surgery.
The SK surgeries did fix a bunch of issues. I had no peripheral vision, my astigmatism was very bad and I had no depth perception at night. Much of that was fixed with the SK surgeries.

I would want to talk to the surgeon who is going to do the cataract surgery and ask about the lens choice and why. And what he believes the recovery time is and how you should handle it.
Sitting in a blur for days is no fun.

Good luck!

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I have an early developing cataract in both eyes which my ophthalmologist first discovered about three years ago. She recommends removing it. I have not been experiencing any discomfort at this stage. Does anyone know if cataract removal at an early stage entails quick and smooth recovery?

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@daisymiq

I have an early developing cataract in both eyes which my ophthalmologist first discovered about three years ago. She recommends removing it. I have not been experiencing any discomfort at this stage. Does anyone know if cataract removal at an early stage entails quick and smooth recovery?

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I had a grade 1 cataract in my left eye and on the verge of grade 2 in my right eye, so both early stage. I don't believe that it the stage of the cataract, but how your body reacts to the various drugs/chemicals that you pour into your eyes during and after surgery. I have negative reactions to a bunch of drugs, especially antibiotics. Of course, you pour antibiotics, along with steroids (which my body doesn't tolerate too well) in all day long for over 5 weeks. Actually, the eye doctors had me stop using the antibiotics because of the side effects in my eyes. All of these meds will get into your blood stream.
Your eyes are an integral part of your entire body and medications used in the eyes need to be considered as medications for your body.
Other people, have no reactions to drugs and I think that helps them with the healing time.
Hope this helps.

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Would you do the opposite eye if it were needed after having so much pain ? Both of my eyes are bad with the map dot so I’m scared really of the comments and no one has mentioned that they were glad they did it after the pain and the healing was done. Please let me know what you think. My surgery is in three weeks.

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Both my eyes underwent the corneal epithelial debridement procedure. Respectively 5 and 3 months ago. The pain from the procedure is managable with drops and painkillers. If you know the pain from map dot fingerprint erosions then it is the same sort of pain. I do recommend to do the procedure as the quality of my life improved. After the procedure it can take forever to heal though. One eye is now OK , the other eye still has some minor issues but it is slowly but surely getting better. Much less to almost no pain anymore and improved vision. At the moment it still to early for me to get proper glasses but once it is possible to get new glasses I will be very happy. Hope this helps and I am happy to help if want to know more about the procedure or my experiences.
All the best.

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@dutchmanmichiel

Both my eyes underwent the corneal epithelial debridement procedure. Respectively 5 and 3 months ago. The pain from the procedure is managable with drops and painkillers. If you know the pain from map dot fingerprint erosions then it is the same sort of pain. I do recommend to do the procedure as the quality of my life improved. After the procedure it can take forever to heal though. One eye is now OK , the other eye still has some minor issues but it is slowly but surely getting better. Much less to almost no pain anymore and improved vision. At the moment it still to early for me to get proper glasses but once it is possible to get new glasses I will be very happy. Hope this helps and I am happy to help if want to know more about the procedure or my experiences.
All the best.

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Hello,
My eye pain came from the cataract surgery and not the SK Map Dot Surgery. It took about 10 weeks for my eyes to stabilize after the SK Surgery. The glare about 3 days after surgery is off the charts. I had to have all the blinds closed and only go for walks at night. After another 2-3 days, the glare does go away. I did get back my peripheral vision which was a huge plus and lost some but not all of the astigmatism. Lines appeared much straighter. But, if you wear glasses now, be prepared to have challenges after the surgery. I was far sighted and had a lot of astigmatism before the surgery .The first week, I could READ without glasses. Then my eyes started to heal and I went back to being far sighted with some astigmatism and no glasses that worked! Basically, you can't even see TV. Walking in my house was difficult as I had to hold onto walls and counters. Being a passenger in a car was awful as I had motion sickness. I did get 2 cheap single focal glasses and had to get my eyes refracted 2 twice for each pair. But yes, I spent 10 weeks getting frustrated because I couldn't see much and was totally dependent on my husband. He was a saint! That is the part that doctors never tell you about. Drugs can help with the pain, it is how to live in this blury, wavy world that they skirt around.

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@dutchmanmichiel

Both my eyes underwent the corneal epithelial debridement procedure. Respectively 5 and 3 months ago. The pain from the procedure is managable with drops and painkillers. If you know the pain from map dot fingerprint erosions then it is the same sort of pain. I do recommend to do the procedure as the quality of my life improved. After the procedure it can take forever to heal though. One eye is now OK , the other eye still has some minor issues but it is slowly but surely getting better. Much less to almost no pain anymore and improved vision. At the moment it still to early for me to get proper glasses but once it is possible to get new glasses I will be very happy. Hope this helps and I am happy to help if want to know more about the procedure or my experiences.
All the best.

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Thank you Dutchman Michael. Can you please elaborate on what was wrong with your cornea? What exactly is corneal epithelial debridement? Many thanks, Marianne

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@irinig

Thank you Dutchman Michael. Can you please elaborate on what was wrong with your cornea? What exactly is corneal epithelial debridement? Many thanks, Marianne

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Hello Marianne, I was diagnosed with map dot fingerprint dystrophy. My corneas where damaged and irregular as the epithelium would easily detach and/or damage. My first symptoms where severe pains (the nerves underlying the epithelium were exposed when there was another erosion. Like a tootache, but then in the eyes. The epithelium would regrow but irregular. This caused blurry vision. Drops and ointments were not sufficient to manage the map dot fingerprint. Also my daily life was depressing with the continuing pains caused by the erosions and damages. Bandage lenses where also insufficient to control the situation. Even with the bandage lenses damages would occur. I was on painkillers most of the time (tramadol). I went to two eye hospitals where I live and basically they told me my cornea where a mess (i could agree) and one hospital proposed the epithelium debridement (first escalation) which means the epithelium is mechanically scraped from the eye. The other hospital advised immediate laser treatment (ptk). This is normally the next step if the mechanical debridement does not give a good result. The PTK means a laser burns the epithelium away. They also offered a bowman layer transplant, but that is still an experimental treatment (at least over here in the Netherlands). Anyway, however the removal of the epithelium is done; it will regrow quickly (couple of days) and the purpose of the procedure is that a clean and smooth new epithelium will regrow and stick better to the underlaying layer. I opted for for the mechinacal removal as my dokter advised it is the least intrusive and during the procedure also micropunctures will be done. Basically a needle that will be sticked in your eye a couple of dozens times with the purpose that it will create scartissue and the new epithelium will stick better as well. The mechanical removal is basically just a small knife that scrapes the epithelium away. Also the eyes where polished with some instrument. All was done by hand by a docter. I was warned that pain after the procedure would be severe. But I was already used to very severe pain so I found it managable. I asked a few docters what if the map dot fingerprint returns? The answers I got was that after the treatment only very few patients would return and then they will just do the procedure again. Now I am a couple of months further and my left eye is OK and the bandage lens is out. The right eye is still somewhat problematic (lens still in) but by far not as severe as before the procedure. The cornea is still somewhat irregular in the right eye (not as thick on all places yet as it should be totally smooth like a mirror). An option for this eye could be the laser treatment still. That was offered and I will discuss during my periodic control in the eye hospital on March 23rd. I hope this helped. If not please let me know (I am not a native english speaker). All the best.

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@bluekittymom

Hello,
My eye pain came from the cataract surgery and not the SK Map Dot Surgery. It took about 10 weeks for my eyes to stabilize after the SK Surgery. The glare about 3 days after surgery is off the charts. I had to have all the blinds closed and only go for walks at night. After another 2-3 days, the glare does go away. I did get back my peripheral vision which was a huge plus and lost some but not all of the astigmatism. Lines appeared much straighter. But, if you wear glasses now, be prepared to have challenges after the surgery. I was far sighted and had a lot of astigmatism before the surgery .The first week, I could READ without glasses. Then my eyes started to heal and I went back to being far sighted with some astigmatism and no glasses that worked! Basically, you can't even see TV. Walking in my house was difficult as I had to hold onto walls and counters. Being a passenger in a car was awful as I had motion sickness. I did get 2 cheap single focal glasses and had to get my eyes refracted 2 twice for each pair. But yes, I spent 10 weeks getting frustrated because I couldn't see much and was totally dependent on my husband. He was a saint! That is the part that doctors never tell you about. Drugs can help with the pain, it is how to live in this blury, wavy world that they skirt around.

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Hi @bluekittymom I am wondering how your eyes and vision is now? In my situation I was in pain before the surgery, I basically had no other option other than to have the procedure as I described done. I could not function normally and be in pain in my bed often. Quality of life was very low. I do agree that the outlook doctor gives after the procedure is too good. Although in my case the doctor warned me about pain and that light sensitivity could last for months. I was happy to take it all, as almost everything was better than keep on suffering. Immediately after the procedure with pain management, I was very optimistic; Everything was colored beautifully and I too could see sharply like an eagle. This was because the epithelium was gone and life can be seen somewhat unfiltered as I would describe it. But with the healing, some of the blurriness returned as well. I did not have it in the same way as you described which sounds awful, I am sorry to say. I also do know and was warned that glasses could become an issue. However, not being able to get good glasses was nothing new to me as my vision was already totally messed up because of the MDFD. I made the mistake to order prescription glasses too soon. I got my eyes measured with bandage lenses still in and my vision was pretty good, nothing too shocking, basically the same as a while before the MDFD diagnosis. However, the lenses probably caused for some cilinder in my eyes that was measured and the glasses I got where not good at all. A waste of money. Now I am patiently waiting (it can take up to a year before the eyes can be healed in total from this procedure I learned) for my eyes to further heal and for a good moment to get relaible eye measurement so I can order some good glasses again. I still have some pairs of reading glasses wich are fine for now, but long term I need better glasses. All the best.

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@dutchmanmichiel

Hi @bluekittymom I am wondering how your eyes and vision is now? In my situation I was in pain before the surgery, I basically had no other option other than to have the procedure as I described done. I could not function normally and be in pain in my bed often. Quality of life was very low. I do agree that the outlook doctor gives after the procedure is too good. Although in my case the doctor warned me about pain and that light sensitivity could last for months. I was happy to take it all, as almost everything was better than keep on suffering. Immediately after the procedure with pain management, I was very optimistic; Everything was colored beautifully and I too could see sharply like an eagle. This was because the epithelium was gone and life can be seen somewhat unfiltered as I would describe it. But with the healing, some of the blurriness returned as well. I did not have it in the same way as you described which sounds awful, I am sorry to say. I also do know and was warned that glasses could become an issue. However, not being able to get good glasses was nothing new to me as my vision was already totally messed up because of the MDFD. I made the mistake to order prescription glasses too soon. I got my eyes measured with bandage lenses still in and my vision was pretty good, nothing too shocking, basically the same as a while before the MDFD diagnosis. However, the lenses probably caused for some cilinder in my eyes that was measured and the glasses I got where not good at all. A waste of money. Now I am patiently waiting (it can take up to a year before the eyes can be healed in total from this procedure I learned) for my eyes to further heal and for a good moment to get relaible eye measurement so I can order some good glasses again. I still have some pairs of reading glasses wich are fine for now, but long term I need better glasses. All the best.

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Hello Dutchmanmichiel!
I never had any pain from MDFD. I had days that when I woke up everything was blurry, which made driving and working not easy. The issues from astigmatism and loss of peripheral vision happened over time and I almost didn't notice. Except my eye doctors were aware of the changes.
I would recommend getting a cheap pair of single distance vision glasses until your eyes heal . That gives you something so you can do things.
The time to heal, eye pain and constant changing vision all happened after cataract surgery.
I also asked about the MDFD coming back and was told that there was a small chance and smaller chance since I am older.

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