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I just finished a 2 and a half week trip to BFS and was diagnosed with corneal neuropathy, cannot tolerate the lens, and am involved in the pain study. Curious if anyone on this board is a BFS patient that has been diagnosed with corneal neuropathy? I would really like to compare notes of what they've done with you and your results. OR anyone that has trouble wearing the lens, regardless of your condition, where did you go from there? You can send me a PM too. Thanks!!
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I was fitted with scleral lenses from BFS about two years ago and was also intolerant of the lenses. They never diagnosed me with anything, but said post-lasik patients like me typically have overly sensitive eyes. I went back about a dozen times thinking the fit wasn't right, they made adjustments each time. It felt like the edges were digging in, totally miserable. Basically my eyes were too dry to keep the outside of the lens wet too. So after many many visits there they said there wasn't anything else they could do.
Since then, I was involved in a dry eye study at the Mass Eye & Ear Infirmary, not very successful. I am currently looking into IPL.
Best of luck to you -
Thanks for the post! Did BFS try anesthetic drops in the lense or the pain scrambler for your overly sensitive eyes?
Also, is the trial at Mass Eye and Ear using Kineret for mgd?Comment
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No, they didn't use any anesthetic drops, I think they were more concerned with me not producing enough tears for the outside of the lens than main underneath. I am not sure what a pain scrambler is.
It is/was the Kineret study. I am now using the 5% Kineret outside of the study, not really sure if its helping.Comment
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Interesting. I would be interested in Kineret if they weren't so far away from me and required so many visits and with no financial help.
The pain scrambler is this machine they hook you up to and place electrodes on your face and try to "teach" your peripheral nerves to send normal non-pain signals. Some people have had success, but I was not one of them.Comment
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corneal neuralgia
I went to Boston Foundation for Sight in February and was also unsuccessful with the lenses (same thing...edges felt like razor blades). Dr. Rosenthal gave me a test where they shine a red light in your eye(?) he said my nerves were overly sensitive and I have corneal neuralgia. I suspected it had something to do with the nerves right from the beginning 5 years ago. He wanted me to stop my meds and start the scrambler (Calmare) treatment {good info on youtube.com also google search: "pain without stain" by perry rosenthal}. I didn't feel comfortable because it was so new and truthfully, the thought of stopping my meds and going back to the "suicidal" pain was unthinkable for me. He called me 3 weeks ago and I was actually suppose to see him again this Thursday to discuss treatments again but I have the flu so I guess I'll try to email him instead. I also heard he has another treatment called tDCS.Comment
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FYI: mylittlem is also a part of the pain study with boston foundation for sight. I did a search for scrambler and came up with 2 posts (this one and hers)Comment
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Regarding shining the red light...if it's in that room with the computer, then I think you are referring to the confocal microscopy where they take pictures of your corneal nerves, so they know if they are abnormal or not. I had that done, and my nerves have excessive branching, which is abnormal.
When I was there, he had just got the tDCS, but I wasn't willing to be the first patient ever at BFS to try it out, especially since I already had lots of headaches from the scrambler, so I decided to go home and come back after he gets some promising preliminary results. By the third week, I was getting pretty exhausted, and having my already painful eyes constantly getting prodded was making the pain unbearable, so I was ready to go home.
Keep me posted if you decide to go to BFS. Like I said, some people had improvement from the scrambler, so it might be worth a try for you.
I've been in touch with mylittlem, and it's been so helpful, in terms of trading information and experiences, as well as coping emotionally.Comment
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Thanks for getting back to me and for letting me know what the test was. I'm so scared to try the scrambler therapy. I'm just afraid it might make me worse, and like you, I want to wait until more testing is done. I won't feel confident until more is known about both treatments. Yes, getting thru each day is an hour by hour (sometimes minute by minute) thing. Some days I really don't want to live anymore but I have a beautiful daughter and wonderful son to raise. It's hard not being able to be a part of their lives as much as I always hoped I would. Having them see me in pain and seeing the sorrow in their eyes just kills me. My daughter was only 2 when this started 5 years ago. God bless you and everyone who suffers with daily pain.Comment
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Dr. Rosenthal's Presentation
Hi all,
Found this on the Calmare (Pain Scrambler) website.
Click on the link for Dr. Rosenthal to download his presentation.
Technical, but interesting.
http://calmare.competitivetech.net/downloads.htmlComment
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Thanks for the link!
I was also treated by Professor Guiseppe Marineo using the pain scrambler while I was at BFS. He was unable to relieve my pain, although I believe some patients benefited from his expertise.Comment
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