No announcement yet.

Resources in Portland, Oregon.. any local person here who understands RCE?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Resources in Portland, Oregon.. any local person here who understands RCE?

    My life is unusual. I am completely alone and I have no permanent housing. My partner and kids are overseas. We have been cut off from each other for over a year due to the pandemic. I do not have any family in the U.S because I grew up in foster care. I have spent a good part of my adult life in Asia. I have been suffering from RCE for over 5 years now.

    I have an opportunity to do a Superficial Keratectomy. I get 10/10 pain from random corneal erosions that of course only happen at night and/or first thing when waking up. Even I use the best lubricating preservative-free eye drops available religiously, and have for years, however, the corneal abrasions/erosions still occur randomly. In my case, the RCE seems to be genetic, there was never any blunt trauma in either eye. It started in my left eye, but since two years ago, they also happen in my right eye also.

    To be honest, my left eye has been blurry for months now, due to a string of corneal erosions, and unlike in the past, my vision is not becoming clear on it's own after a few weeks. It makes me think the left eye is worse than the right now.

    Back to the Superficial Keratectomy...
    1. I have a chance to do it this month in the left eye. The problem is here in Portland, Oregon, I do not have any permanent housing. There is one option with someone to possibly stay there house for "up to 3 weeks." My concern though is whether 3 weeks is enough time to recover for sure from a Superficial Keratectomy. What are the odds of some complication or some other mishap from the procedure? What are the odds of an infection? I think I can manage the 3 weeks here, and then plan to spend the rest of the summer (until the housing market calms down) in some cheaper place such as Mexico or Turkey. Basically, I want to know if 3 weeks is enough time to be certain that I can recover from the procedure? Technically, they want me to come for a follow-up "4 weeks" later. I am planning to ask whether I can come at 3 weeks instead. Having never done any procedure like this before, I just worry whether 3 weeks is enough time. However, in my situation, that is all of the time that I have! I don't know anyone else in this city, and with the pandemic it has been hard to meet people.
    1. Here is the second very complicated thing. Ever since I was a child, I have had some kind of super sensitivity and cautiousness with things touching my eyes. I seem to flinch, and jerk my head away uncontrollably when anything goes near my eyes or particularly when something comes close enough to touch it. I believe that mine is worse than almost anyone else in this regard. Basically, the plan would be to use General Anesthesia or some kind of deep sedation in order to do the Superficial Keratectomy. Whereas, most people can do the procedure as an in-patient thing with just some numbing drops, due to my eyes' sensitivity and perhaps also phobias, it seems perhaps the only way to do it in my case is with General Anesthesia. I have never done GA before. There is some degree of risk there. Is it worth it?

    In 2019, in Singapore, where my partner lives, and when I was visiting, I had an eye doctor / surgeon who was very patient and kind. He took a lot of time to practice with me in his clinic. We spent two hours with the help of his nurse practicing to get a speculum in my eye. After some very strong numbing drops, and after two hours of trying, he managed to get the speculum in my eye. It felt extremely uncomfortable and I was still flinching a lot.. but he managed to put it in and take it out. Here in the U.S, in my experience here in Portland over the years, the doctors have neither the time nor the patience nor the care in which to do anything like this. In fact, the doctor who I saw who is supposed to do the SK procedure on me.. I was only able to meet him for 15 minutes. That was it. No follow-up was available. The option is either do the SK, or that's it.. and that's the only option. There is no other line of treatment. I believe this is the correct procedure to do.. as it does have the highest rate of success, I believe, out of the options available. So my point is one doctor managed to get a speculum in my eye one time while I was conscious. However, I have tried with many doctors on several options to try to install a contact lens in my eye. Every time we have been unsuccessful. Does anyone else have this kind of problem that I have? I feel like a freak. I feel so bad that it is so difficult to touch my eye while I am conscious. Has anyone here ever done a SK while under general anesthesia? How was it? There is also a smaller concern about the contact bandage being installed after the SK. How does it feel? I know I'll be in a lot of pain anyways, and probably won't even care about the contact bandage but a week later is it easy to take out with someone who has my kind of sensitivity? What if it were to fall out.. and somehow it would be nearly impossible to put another one back in?