Map Dot Fingerprint Dystrophy

@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.

Extensive reply. I have numerous comments to share and found your information helpful. However I am very awkward texting. If you feel comfortable sharing your email I have a fairly extensive reply that will be easier for me if I can use my keyboard. If you don’t feel like Shaun your mail I completely understand and will the txting. I study with Rod Stryker (yoga teacher) and practice visualization as well as yoga Nidra to assist in the healing preprocess. Not your self-hypnosis but similar. Would like to compar notes. Once again, thank you so much and hope to hear from you soon. Bob R. (I’m a CPA trying to finalize tax season with one functioning eye!😁)

Hi Rhoda! I'm Rachel and I found some of what you said very interesting. I have Fuch's dystrophy. I needed cataract surgery and cornea transplants when I was 43. Between the 2 procedures, my sensitivity to light was to have been dealt with. Unfortunately, it was not and grew worse. I know all about hiding out in the dark, living under hats and behind sunglasses. No more movie theaters, fireworks, concerts etc...Light sensitivity is normal during the healing time after surgeries but my healing apparently never ended. I used to drive home in the dark from work wearing dark sunglasses. Kept my cataract glasses for a long time. The snow and rain would make matters so much worse due to glare. It was very dangerous. Always worried about not seeing a pedestrian on the side of the road. My cornea specialist could never understand why this was and I was referred to a neuro-opthlemologist who blamed it on scar tissue from my past surgeries and oh yeah, I have blue eyes...what a crock! Last winter I finally threw in the towel. It's been 6 years now and each year has gotten worse driving at night. Sharp pains like daggers in my eyes on top of enducing migraines made me give up driving. Even as a passenger I need to wear hats and dark glasses and keep my eyes closed tight when car lights flash by. Often I may lay down in the back seat to avoid well lit areas, traffic lights and cars. This year I was diagnosed with small fiber peripheral neuropathy and can not help but wonder if the fact that there are a large amount nerve fibers in the corneas, it may be the contributing factor to my photophobia. Could neuropathy possibly do this? There is a cornea confocal microscope used for diagnosing SFPN so it only makes sense to me that there would be a connection.I have a message in to my neurologist to shed some light (no pun intended) and my cornea specialist has yet to weigh in. I'd appreciate your thoughts or anyones thoughts for that matter. Mayo Clinic in MN turned me down so why not ask here?Thanks a bunch and I hope you are having an uplifting day!!!
Rachel

Extensive reply. I have numerous comments to share and found your information helpful. However I am very awkward texting. If you feel comfortable sharing your email I have a fairly extensive reply that will be easier for me if I can use my keyboard. If you don’t feel like Shaun your mail I completely understand and will the txting. I study with Rod Stryker (yoga teacher) and practice visualization as well as yoga Nidra to assist in the healing preprocess. Not your self-hypnosis but similar. Would like to compar notes. Once again, thank you so much and hope to hear from you soon. Bob R. (I’m a CPA trying to finalize tax season with one functioning eye!😁)

@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.

@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.

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