Cryo surgery for Lattice Degeneration

Cryo surgery for Lattice Degeneration

I’ve been gone for a while, so I haven’t updated my blog. I took some time off for the birth of our first grandchild. I was able to be with my daughter during delivery and it was simply joyful. She is an amazing person that made it through a natural delivery without any medications. The little guy is 3 weeks old now and I miss them all terribly, but I had to come back home to my own responsibilities. Once I got home, I made the promised call to my eye doctor, who promptly called the eye surgeon and set up an appointment for a couple of days later. So we trekked up to Columbia for the appointment, we being my husband and I, he happened to be on vacation that week.
The appointment with the eye surgeon, a retina specialist did not go as we thought it would. They did the dilatation and he spent a considerable amount of time carefully checking each eye, then asked if it would be okay for him to go check some facts concerning the combination of Lattice Degeneration and Ehlers-Danlos Syndrome. He came back and began to explain. It seems the degeneration is my eyes was much further advanced than anticipated, with the left eye being worse than the right. He said I had multiple stage degeneration in all four quadrants of each eye. He was so alarmed about it that he asked me to roll over to the hospital and have surgery on the right eye within an hour, with a return trip to the hospital the next day for the surgery on the left eye. We discussed the options, with me explaining to him that my own research showed that the cryo surgery seem to be the better option (versus laser surgery), with a higher success rate for people with EDS. He said that was what he had gone to look up and that he had found the same answer. So it was decided. His staff kicked in to full gear calling our insurance to get it pre-approved and calling someone from the hospital to come over and escort my husband and me to the outpatient surgery unit.
They do the surgery while you are fully awake, numbing the eye so that you cannot feel it. I have an issue with needles so they gave me 5mg of valium to help with the anxiety. It didn’t work, which I tried to tell them would be the case, but alas they did not listen. I have such a high tolerance for narcotics that I don’t even notice 5mg of valium. The high tolerance came into play again with the numbing agent because I was able to feel what he was doing after the first shot, so he had to do another. All in all, it is a terribly odd feeling to have your eyeballs rolled around while someone is freezing parts of the back of them, during which your pupil is dilated to the maximum so that the surgeon can see the back of your eyeball but making you, for the most part, blind. All in all, it hurt but not too terribly bad. My eye was heavily padded and tapped over to keep it from opening, while it is numb and dilated you cannot feel if the cornea is getting scraped so you must keep the bandage on until the numbing agent wears off. It was painful but not unbearable, so we checked out and headed home. Plans cancelled for the rest of the week, which were to include a long over due fishing trip.
Thursday we returned to the hospital where I was again given the 5mg dose of valium and it again, didn’t work. The numbing shot didn’t work either but the doctor decided to push on through it rather than do another injection. It hurt like bloody hell. As I said before, there was more damage on the left eye, so more work had to be done. By the time the procedure was over, I just wanted to ball up in a corner and die. I don’t know why he didn’t listen that I could feel it. He chose instead to say that it was hurting worse because I was ‘squeezing’ my eyes shut. Well, duh…it’s kind of instinctive to do that when someone is doing something that hurts like that. It didn’t matter, it was over. The eye was a throbbing, swollen, painful thing that was stuck in my head with nothing to be done about it now. It made my whole face hurt and messed up my sinuses to boot. They don’t give you pain killers to take home, by the way, so you just get to suffer it out on your own. If screaming didn’t make it hurt worse, I think I might have just let a good one go.
Home we came, with doctors orders to ‘lay around and take it easy for the next 7 days’ and to ‘stay indoors, avoiding lights’ because the dilation of the pupils would last for days.
I spent a lot of time sleeping, ironically. Sleeping is something I don’t usually do well because of the EDS. I mean really, when you sleep your muscles go lax and then you dislocate or sublex something, wake up to put it back, then repeat. It doesn’t exactly make for great rest. I guess in this instance it was purely self-defense, my mind knew no other way to get through it than to make me pass out cold for short periods. So I went with it, not much else I could do. Doing anything, like trying to watch TV, get on the computer or read just made the pain in my eyes worse. Keeping them closed made them feel a little better, so closed it was.
I started writing this on Monday, 5 days post-op for the right eye, 4 for the left. The right eye is recovering a lot faster than the left, which is sensible since less work was done to it. Still, I have to write this in even shorter bursts than normal because it makes both eyes water. I hope to goodness this surgery works because I don’t honestly think I could endure that again. They would have to knock me out completely. It was just too painful. I am glad I did it, it is much better than playing roulette with a retina separation. Still I have to wonder sometimes, how much else will EDS demand of me? I cannot keep my fingers from dislocating without the aid of special splints. I cannot keep my hip in the socket. I cannot keep my ribs in place. I cannot keep my shoulders in place. I cannot sleep for even a couple of hours comfortably. I cannot take medication to help with the pain because I have such a high tolerance to all of it that it is rendered useless. I cannot stop or even reduce the amount of pain I am in every single day.
And yet, in the end, none of that matters. It really doesn’t. It’s just hard to remember that some days, when the pain is worse than usual, when the demands are higher than normal, when people are meaner than they need to be. None of it matters one fig. What does matter, and what I cling to so dearly, is that I be the best person I can be each and every moment of each and every day, to try and be thoughtful and kind; understanding and patient; calm and accepting. Too bad most days I fail at that goal, but at least I still try, EDS cannot take that from me.