Map Dot Fingerprint Dystrophy

@bobr1040 hi again, Bob. Glad to hear about the improvement in eye. I definitely use self hypnosis for healing and pain, mindfulness meditation for over well being and quality of life. Definitely ask for pain meds post op for peripheral pain.any pain or stress impedes healing. Hope you like the book but if you don’t I have other options. There is also an app available called CALM, which plays music and guides you through safe place imagery. The have a large number of options available. I usually don’t like the web hypnosis programs but I like this one. Also pricey but they do give you a free week to try it out. You just have to remember that they will charge you at the end of week for a years usage. You automatically opt in unless you tell them you don’t want the app. At any rate I find it helpful. Glad to be comparing notes again and chatting. Looking forward to staying in touch. Chat soon. Rhoda @rckj

Hi Rhoda,
Just checking to see how you're doing. My eye has finally gotten to the point where it can be adjusted to almost 20/20 and I will be getting new glasses next week. I ordered that large book you suggested but it was a little overwhelming so I returned it. I have found some others on self-hypnosis and are using them. I don't have a problem determining a script for what I want to accomplish - I just have a problem sometimes getting to the alpha wave level. Nevertheless, when I sit and breathe, meditate, go through my script for 30 - 45 minutes in the morning I am beginning to have some good results.

I do have a question. When and if you are taking opioids for pain does that effect your ability to meditate/achieve lower brain wave levels?

Hope your fall is going well. Regards, Bob

Hi Rhonda this is janice and I live in Massachusetts. I have been diagnosed with this map dot fingerprint dystrophy and am being seen at mass eye and ear. My doctor is taking a conservative approach with the contact lens, drops, lubricants, antibiotics, etc. I am frustrated as I am self employed and have been dealing with recurrent erosions for several months. At what point does a doctor recommend surgery and is my ability to d Ed or know severely impaired. Should I see dr Raizman? Ty janice

Hi there. I was diagnosed with MDFD about one month ago. I am a 50 years old. I mainly had pain for about a month in my right eye before my diagnosis. Like tootache pain. Pulsating and continuing for hours before it relaxed a bit. Also woke up during the night because of pain. I could not tolerate light and only after the sun went down I could feel a bit more comfortable. Together with the pain came a lot of anxiety about going blind or having a horrible disease. After the diagnosis the anxiety increased but now it is getting better as also second opinion excluded other eye diseases and re-confirmed MDFD. Tuesday i will visit a neurologist to check if there are other problems since the area around my right eye and the skull are also painful. Combing my hair at that area is painful and the skin has a burning sensation. After the diagnosis I got a bondage medical lens and that indeed took the edge of the pain. After two weeks the bondage lens was removed to find out what is the current situation. The eye burns every now and again and I get occasional stinging pains and flashing pains that are upsetting and cause anxiety. I drop tears and gel during the day at will. This means I use drops and gel all day long. At night I use fatty creme. All described by doctors. My options are laser treatment (scraping top layer) or bowman layer transplantation if the situation does not stabilize or improve. Now I can use the telephone and the computer without getting too much pain. First I could not tolerate any screens. Also the tiredness of the eyes improved a little bit. Overall I am still not very happy. Vision is stable, not bad, but sometimes blurry and I get eye strain very easy. At the moment the eye feels like I got some punches on it. I am somewhat reassured that the conditions seems to be non-progressive and does not cause blindness or deteriorating vision/progressive vision loss. I too am seeking other people with the same condition as it seems the other people I have talked to so far do have (much) milder symptoms and symptoms seem to vary person to person. I am willing to discuss in the public forum or through email or other means of communication. Edit: I forgot to mention that the tear tubes in my eyelids are chronically infected, which does not help with MDFD. I wash my eyelids in the morning and before I go to sleep. I use warm towels to melt the eyesand before I remove it. All with all taking care of the eyes has become a full time job.

Just a follow up on my previous post. Extensive neurological tests have not found any neurological issues with my eyes. The pains and sensations in the area around my right eye are caused by strain. This is good news for me. I am now sure that all that is going on is MDFD. What I need to do now is keep the eyes in the best condition I can possibly do to avoid erosion and damages (which cause tootache-like pains in my eye). Therefor I use drops, gels and cremes (a lot!). Also the vision gets a lot less blurry by keeping this strict protocol of eye care. Also I take bilberry extract and extra vitamine d. Also I am looking for good fish-oil. Ofcourse I am not sure of any of this works but there seems to be some evidence for bilberry and fishoil for eyestrain and vitamine d for general health. I am now as good as pain free but with occasional burns. A tingling presence is always lingering in the background though. Mentally I have improved as well , I guess mainly by excluding other issues visiting a neurologists and having second and third opinions. This gave me reassurance with what the heck I am actually dealing with and I can focus on just that now instead of having to worry about -basically going blind , or even my life. End of April and the month of May has been the most terrible period in my life. If anyone needs help dealing with with the debilitating pains MDFD can cause please feel free to discuss with me, I haven been there and am now relatively OK.

Following up again. The lingering I described earlier has increased and resulted in another erosion in the right eye. The bandage lens is back in and the eye doctor said I need to have a procedure. Or I will be in first aid every time the bandage lens comes out (bandage lens has to be worn 24/7 and only for about a month, to avoid veins growing into the eye due to lack of oxygen caused by the bandage lens). First it looked like I was going to go for the abrasio, polishing and micropunctures (manual/mechanical procedure), but now it looks like I will go for the PTK (laser). The PTK succes ratio is 95% but can cause dry eye. However my tear production is OK , so it should be fine in my case. The Abrasio etc has a 75% succes ratio. I am fine now relatively with the bandage lens. I do get eye strain and headaches easy though. I am strictly following drop/gel/cremes procedure + eyelash washing two times a day. And I take bilberry, vitamine d and fish oil suppletion. It looks now the procedure will take place Sep 6th (right eye). During measurement my vision in the right eye has actually increases with .5 points which is amazing to me. Vision does get blurry though. If blurry I increase drops/gels. Also when lingering starts I increase drops/gels. It can happen I will drop tears and gels in an eye 10 minutes untill the eye can not absorb any more. (My eyes squeek from moist when I roll them or move them around). I a will keep you updated. The left eye is still relatively OK but I can feel the same process that started in my right eye. This is depressing but I know there is help available. I am very paranoid about lubricating also the ‘good’ left eye. I was also proposed the experimental bowman layer transplantation. They did 25 of them, all successfully. The history is only two years though. The Clinique claim they are probably the only one on the world to offer this type of transplantation. For now I will keep this option as back-up. I am also not sure of my healthcare insurance will cover this experimental procedure. AMA.

Following up again on my MDFD ( I had another follow up post but can't find it?). In anyway, on Aug 30th I had the debridement procedure (aka abrasio) done in the right eye. The procedure went very smooth. Now 6 weeks in there still are some days with sensitivity, which is possible due to my eye doctor. I read somewhere it can take up to one year before the cornea has the normal thickness again. Next Monday I will get my first eye measurement on the right eye for prescription glasses. Also there will be a check if there are any remainders or new MDFD in the right eye. My left eye was treated with the same procedure last Tuesday October 11th. This time it was more painful and more local anesthesia drops had to be used during the beginning of the procedure. Also the eye clamp irritated more because the assistant forgot to give it support so it was sort of hanging from my eyelids. Annoying. The aftermath of last Tuesday was more painful, but probably because I permitted myself more freedom as the procedure on the right eye went so well. So this time I wasn't as strict with painkillers, drops, going outside, not closing curtains etc. for which I assumably paid the price. Also next Monday my left eye will be checked as a routine check one week after the procedure. With regards to vision I can say that vision in the right eye, six weeks after procedure, seems to improve step by step, very very slowly. I have to await Monday measurement result. At this moment during the day I sometimes can see better without my glasses then with my glasses though. Even with the left eye that was treated just last Tuesday. That is somewhat hopeful. Blurryness in the right eye treated on Aug 30th is reducing to almost zero. Pain is also much much better although still not completely gone - can still sensitive as mentioned above already. Mentally I am a lot better, as I am now used to what MDFD means. If I can help anyone who was just diagnosed and is in distress I might be able to help and guide you. For most of the time after my treatments I am able to live life as usual, with some constraints only. Will keep you posted.

I was diagnosed with this condition in 2020, I have seen 4 specialists and have had everything from manual polishing of my cornea to laser eye surgery PTK .
The PTK worked for 2 years and then I got it back in my Left eye.
I have had laser surgery on both of my eyes.
I use Muro 128 ointment 3 times a day in my left eye, and once a day in my right eye.
When I have a episode I get unbelievable pain, it starts very early in the morning and last most of the day,
Your eye will run and even your nose with the pain, which in my case also causes a spike in my blood pressure.
The poor vision lasts for about 4-5 days.
The laser surgery as pretty painful, I had to wear a eye bandage for 3 weeks, and the first week I used 6 different drops through out the day. (Just as a side note the day after I had the surgery my wife cooked a spicy mean and when she was doing the cooking it made my eye go nuts)
After 2 years pain free I have had a new flair up in my left eye, I have seen a eye specialist and he advised to go with more Muro 128 ointment, and more eye drops. (HiLo jell eye drops)