Map Dot Fingerprint Dystrophy

Posted by corinneh @corinneh, Feb 16, 2019

I have been diagnosed with this condition in my left eye. Does anyone else have experience with this? It is becoming more bothersome in the past few months – always feels like I have something in that eye, i.e. eyelash, and vision is a bit blurry. Then it clears up on its on for a few days. What can be done? Thanks for sharing your experiences and advice.

@rckj

@rwinney hi Rachel. Nice to hear from you. You have had a really rough time of it! Glare and bright light bother me all the time but especially post operatively. I’ve had a few years with some stability from the corneal dystrophy and have been able to drive. Some destabilizing now, may need more laser surgeries, not yet at the point.of needing transplant. I have another unrelated illness that I am also struggling with, improvement with help from Mayo in Rochester. I’m not totally sure about all the factors that contribute to the photophobia. For me, it’s that the layers of the cornea are unstable and not flush with the eye. They don’t seem to act like the filter they are supposed to be. The neuro ophthalmologist continues to be helpful to me. Maybe yours will have some ideas? I think is good that you are getting the nerve and corneal specialists to weigh in. I hope they have some ideas. I know mine is worse as the day goes on and glare is especially uncomfortable. When the nerves are inflamed it is worse. Sorry for your struggle and I hope we can stay in touch to share the battle and potential solutions! Best wishes, Rhoda.

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Thank you for your reply Rhoda. I hope you continue to find stability with your corneas and all the best to you with your other illness. Yes indeed we can stay in touch.
Rachel

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Thanks again for your extensive reply. This method of communication is fine. I have been away from a keyboard for a while and just using my phone. Forgot it was accessible on my desktop.

Your explanations really helped – sounds like a similar timeline. I would be interested in learning about your self-hypnosis techniques as I have used my yogic medications for self-healing of various illnesses. They should be similar.

I am in the healing process now – waiting for my epithelial cells to grow back and reseat themselves. If I have to have more surgery I will be in touch to see if your specialist has any referrals for Dallas, TX or Houston (I'm in Longview – East Texas).

Again – thanks for your explanation. It helped.
Bob

Liked by Lisa Lucier

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@rckj

@bobr1040 hi, this is Rhoda @rckj. Sorry it took me a day to get back to you. Also, if you feel comfortable explaining to me what kind of peripheral pain you have, I might be able to answer your questions better. I have map dot fingerprint corneal dystrophy and have had two surgeries to each eye. I am temporarily stable but showing some signs that may lead to more surgery. I was misdiagnosed for many years until I found a corneal dystrophy specialist. He is really good and compassionate. If you are anywhere near Boston, I highly recommend him. Micheal Raizman, MD at Opthalmic Consultants of Boston. If you aren’t too far away I know an organization that flys patients to medical care free of charge. The surgeries I have had were all debridement plus use of the excimer laser to clear debris and promote healing. Yes, after all surgeries I had excruciating pain. Dr. Raizman explained the issue with opiates. The cornea is filled with nerves but has virtually no blood supply. So taking oral or IV painkillers will never work on the cornea because there is no blood supply to bring it to the cornea. It wasn’t an issue of withholding opiates because of all the current overreaction to opiate use. Patients in pain need should get opiates if they will help. I do, for another serious illness I have. They help with my other illness but not with the corneas. I researched corneal pain and I believe my doctor is right. But, opiates should work on peripheral pain that doesn’t originate in the cornea. All my peripheral pain was referred pain from the cornea so no help there. There are analgesic drops for surgeries and procedures but they can’t be used for post operative pain as they damage and degrade the cornea with any use other than procedures. Bandage lenses help me some as well as several drops that encourage the cornea to heal, plus antibiotic drops. Regarding bandage lens, they have to be carefully fitted and inserted, then kept moist with whatever drop your doctor recommends. Lubricant drops helped me but check with your doctor first. Also any lubricant drop must be preservative free, usually single use containers. I use Refresh Plus. Same brand ointment helped at night. But , yes, the pain was awful due to all those nerves in the cornea and no blood supply to deliver the opiates. I wish I knew what to say. Oh, it also helps to stay in dark rooms and use dark glasses. My doctor gave me dark glasses that fit over my regular glasses, which helped.Regarding peripheral pain, I saw a neuroopthamologist who confirmed, for me, that all the pain came from the cornea, after a series of simple tests. It was awful. I have taken hydromorphone (dilaudid) with minimal effect. I use self and guided hypnosis which helped some. I am a doctoral clinical psychologist who does hypnosis, so had access to those resources. Depending on where you are, I might know someone, if you want to try that. Basically I had to wait for healing. Did they use the laser as it does shorten healing time? Dr Raizman is one of the worlds experts on dystrophy and the laser. I’d be happy to call him for a referral in your area, if you decide to change doctors. Regarding “sand in the eye” feeling, lubrication helped. My doctor also put silicone punctal plugs in both lower lids. It blocks too rapid drainage of tears, keeping the cornea naturally moister. Sad to say, despite all the advice and my doctor warning me about the pain, it is awful and basically I had to ride it out. Dr Raizman kept a close eye on me and adjusted drops, etc. I am hoping you will write back and let me know what helped and what didn’t. I may also have more information on your peripheral pain once I understand what it is for you. All my best wishes and hopes for a speedier relief from pain. Regards, Rhoda.

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Hi Rhoda, this is Bob again. I'm almost 4 weeks from the debridement and very much improved. My vision has improved from 20/400 to 20/40 last week and I will be fitted for a new prescription next week. Your information was most helpful. I came to the realization that I too had to grin and bear it with the pain. However, if there is a next time I will demand pain pills for the peripheral pain. It helps some. I did get a few hydrocodone from a friend and while they did not reduce some of the direct pain it did help minimize the pain overall – eyelid, etc. I do have access to some corneal specialists in Dallas through several references. However if your specialist knows someone in Dallas he would recommend I would be glad to consider it. I will eventually have to have a cataract done in my left eye which also has the map dot dystrophy disease. I'm thinking I might want a specialist to do that if possible to avoid disturbing the disease. I would be interested if you could guide me in the direction of any books related to self-hypnosis. I have used alpha-genics and Sylvan mind control in the past but gotten away from it. I used my meditation to try to direct some healing with the eyes and would like to explore other possibilities if you recommend some. Thanks, Bob

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@bobr1040

Hi Rhoda, this is Bob again. I'm almost 4 weeks from the debridement and very much improved. My vision has improved from 20/400 to 20/40 last week and I will be fitted for a new prescription next week. Your information was most helpful. I came to the realization that I too had to grin and bear it with the pain. However, if there is a next time I will demand pain pills for the peripheral pain. It helps some. I did get a few hydrocodone from a friend and while they did not reduce some of the direct pain it did help minimize the pain overall – eyelid, etc. I do have access to some corneal specialists in Dallas through several references. However if your specialist knows someone in Dallas he would recommend I would be glad to consider it. I will eventually have to have a cataract done in my left eye which also has the map dot dystrophy disease. I'm thinking I might want a specialist to do that if possible to avoid disturbing the disease. I would be interested if you could guide me in the direction of any books related to self-hypnosis. I have used alpha-genics and Sylvan mind control in the past but gotten away from it. I used my meditation to try to direct some healing with the eyes and would like to explore other possibilities if you recommend some. Thanks, Bob

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@bobr1040 hi Bob, it’s Rhoda. Sorry so long to get back to you but my other medical condition flared, requiring hospitalization. I am
more available now, baring a few inpatient procedures. In terms of books and hypnosis for pain, illness, etc., try Corydon Hammond, “ “Handbook of Hypnotic Suggestions and Metaphors”. It bridges the clinician patient gap nicely, is easily absorbed and has large numbers of scripts and suggestions to use. It is organized by topic and easy to use. Hope it helps. It is pricy but any good university library should have a copy for loan. You are already using some sophisticated solutions but this book should add to them and give you new ideas. It’s a good addition to pain killers and to the techniques you are already using.
How are you now? Hoping we can stay in touch. I have been uncharacteristically inconsistent but will try to be better, illness allowing.

Best wishes,
Rhoda @rckj

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HI Rhoda, thanks for the reply. Sorry to hear about your hospitalization. I hope the medical community will be able to help you. Thanks for the information about the book. Finding someone who also uses energetic techniques helps me by confirming I am on the right track. My eye has gotten much better – no additional debridement anticipated. My vision in the right eye has gone from 20/400 to 20/40. I am still experiencing some blurriness in the eye and Dr. attributes that to the fact that the epithelial cells/cornea have not gotten back to the normal curvature. The way Dr. described it to me is "when you cut your skin during the healing process the wound scabs over and then forms a little bump before it flattens out and is healed. That is where I am now – waiting fore the "bump" to flatten out. The epithelial cells look good and are adhering to the cornea. Don't anticipate having to see a specialist this time. Will do so if the problem reoccurs. Dr. thinks my eye will be back to normal (curvature, etc.) in about 3 weeks and will be fitted for a new prescription for my glasses at that time. I would like to stay in touch and will definitely let you know how the book works out. Chat soon. Bob

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@bobr1040

HI Rhoda, thanks for the reply. Sorry to hear about your hospitalization. I hope the medical community will be able to help you. Thanks for the information about the book. Finding someone who also uses energetic techniques helps me by confirming I am on the right track. My eye has gotten much better – no additional debridement anticipated. My vision in the right eye has gone from 20/400 to 20/40. I am still experiencing some blurriness in the eye and Dr. attributes that to the fact that the epithelial cells/cornea have not gotten back to the normal curvature. The way Dr. described it to me is "when you cut your skin during the healing process the wound scabs over and then forms a little bump before it flattens out and is healed. That is where I am now – waiting fore the "bump" to flatten out. The epithelial cells look good and are adhering to the cornea. Don't anticipate having to see a specialist this time. Will do so if the problem reoccurs. Dr. thinks my eye will be back to normal (curvature, etc.) in about 3 weeks and will be fitted for a new prescription for my glasses at that time. I would like to stay in touch and will definitely let you know how the book works out. Chat soon. Bob

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@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

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@rckj

@bobr1040 hi it’s Rhoda @rckj Does this way of communicating work for you? Wasn’t sure after your last post. Happy to chat again whichever way works for you. Would FaceTime or Skype help? Or dictating? Glad to hear that the yoga helps, it’s really good for healing. Looking forward to comparing notes soon. Also finishing up my and my husbands taxes so I have a little bit of an idea of the rush! Hope to talk soon. Regards, Rhoda

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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

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