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Old 05-10-2008, 12:28 PM   #1
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ember919 HB User
PTK and recovery

Hi everyone,
Have searched and read through threads looking for info about PTK and recovery from the procedure, but haven't found much in the way of details other than the "Evie" post. (and thank you for that)

I'm looking for your stories of what recovery was like. On the 1-10 scale of miserable, where did your recovery fall? And how long do you think it took to feel "normal", or do you ever reach that point? Has anyone had to go through two PTK procedures?

My husband has been going through a nightmarish couple of years with very painful RCEs. He is now experiecing what he describes as "the worst yet" and his doctor is really pushing for PTK, wants to do it next week.

My husband is extremely reluctant to go through the procedure (and I'm reluctant to have him to go through it) because the doctor has told us that he will be in pain "equal to what you feel when you have an erosion" for 5 to 6 days. Now, when my husband has these erosions, he's in a LOT of pain. He's not a wimp, but some of these episodes have made him want to curl up and die.

He's been through antibiotic drops and steroid drops and he's been religious with the Muro drops and ointment and OTC lubricating drops. He's worn a BCL every time he's had an erosion. He was on doxycycline for about a year. He's sick of all this and wants it to stop, but he can't imagine going through 5-6 days of what doc has described as "terrible" pain.

Doc has also emphasized that nothing can be done for the pain. He says oral narcotics are useless, yet I've seen mention of them in threads here and people talk as though they help. I've also seen mention of numbing drops, which sounds pretty good, but the doctor has not said anything about this.

Any opinions, suggestions, advice?

Thank you!

 
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Old 05-10-2008, 03:17 PM   #2
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ebmd HB User
Re: PTK and recovery

Quote:
Originally Posted by ember919 View Post
Hi everyone,

I'm looking for your stories of what recovery was like. On the 1-10 scale of miserable, where did your recovery fall? And how long do you think it took to feel "normal", or do you ever reach that point? Has anyone had to go through two PTK procedures?

Thank you!
I had PTK in 2001, and the doc also said I'd be in pain for 5-6 days as bad as an erosion. In my mind, the pain of the surgery was nowhere close to a bad RCE. If anything, the pain was more of a throbbing pain than the stabbing pain of RCE. They prescribed percocet, but I only used it the night after the surgery. I would call it discomfort for a few days, not pain. Vision was clear again after a week. Pain on scale of 1 to 10: 3-4. I got it done on a Thursday, and was back at work on Monday (could have gone in on Saturday).

The journal articles I read on retrospective PTK studies said that fewer than 10% require a 2nd, and none needed a third. BTW, numbing drops cannot be used (and won't be required); they are slightly toxic to the eye and cannot be used on a continual basis.

Look for my old posts - I've described my PTK experience in great detail a few times on here, but the last time I described it in detail was probably 2-3 years ago.

In short: It was the best thing I ever did. The side effects of not doing it were far greater (fatigue, falling asleep while driving, general misery). I had RCE for a few years, with the last year of it being completely miserable. Mine was actually done emergently due to the severity. I absolutely hated the fact that I didn't want to travel or anything - I was in Europe when one severe one hit and almost had to come home. I was having more than half of my cornea erode in these events, but I haven't had a single RCE since the PTK. My eyes are dryer now, but that doesn't bother me. I definitely don't fear RCE's in that eye anymore.

Bottom line is that if I ever start getting them in my other eye, I'm going straight to PTK. Mild cases may go away or be controllable with alternative measures, but it sounds like your husband's is not going to fall into that class, and even if it did, he's lost enough time to this that he should just get it done.

Again, look up my old posts. One difference between mine and Evie's is that she got PRK, so the recovery was longer for her, vision-wise. There were some other people that used to write about it also, and I think in general no one thought it was that bad.

Tell him not to worry - I remember being scared about it too, but the whole thing is over so quickly. He'll be so glad he did it.

hope that helps, good luck, and keep us posted.

ebmd.

 
Old 05-11-2008, 07:59 AM   #3
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ember919 HB User
Re: PTK and recovery

Thank you, ebmd. Every story helps. I did go back a ways and read through quite a few more of yours posts. I appreciate the info.

 
Old 05-15-2008, 10:30 AM   #4
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Re: PTK and recovery

My doctor told me it was a matter of percentages and you wonít know where you fall until you have the surgery. Iíll try to briefly make a few points from my personal experience.

-the surgery itself did not hurt and did not take very long. A sedative is offered, I didnít take it because I already take some medication that has a sedating side effect.

-the painkillers, I had both, but my situation was complicated by getting sick from one and then missing doses. I had both percocet and vicodin. Unfortunately the pain was already too bad when I could finally get the dosages down and they were no longer that much help.

-if I did it again, I would plan, that immediately after the surgery, lay in bed, in a dark room and not move my eyes. I believe I developed a sensitive area during the healing that may have been averted by keeping my eyes still. I would have done this the first couple days and seen how the 3rd day went.

-even with the pain, I felt significantly more comfortable as time went on. On my worse day, that morning my eye was red and lid swollen. I would say I went from and 8-9 to a 3 by early evening in terms of pain. There really was only one REALLY bad day. And like an erosion, the more still you keep your eyes, the less pain you have.

-the minor irritation lasted the longest. That feeling of a lash or something in the eye. That kind of drove me crazy. Prepare for lots of drops for the first couple months.

- I also had PRK with my PTK. I still have ghosting that was present before the surgery and my vision is blurry close up.

-there is some dryness with the eye and nightly lubrication is necessary. I donít have problems with that during the day. Genteal Gel Severe is the product that works best for night time for me. It only lasts about 4 hours (for me)

Like embd, I would do this again, no question. Things arenít perfect, but they are worlds away from pain and misery of recurrent erosions. One year of that was enough for me. I am so happy I did this surgery. It really gave me back that quality of life I enjoyed prior to injuring my eye. The surgery IS like a major erosion, but I can remember some of my bad RCEs, how my heart palpitated, my nose and eyes running, the inability to control my eye from fluttering because of the painÖnone of this did I experience after the surgery. I think it is really different when you can prepare yourself for the pain and discomfort and that you know you just have to get through it. Knowing those painful erosions would be behind me was incentive enough for me to tough it out.

Hope that helps. I hope your husband gets some relief soon. I know it was hard for my husband to watch helplessly as I suffered through all of that.

 
Old 05-15-2008, 10:04 PM   #5
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Re: PTK and recovery

If you are like me and want to avoid surgery at this time then the absolute best advice I can give you is to learn to awaken with your eyes closed, still and relaxed. Then, turn onto your back and add lots of artificial tears IN the corner where your nose meets your eye and let gravity work the tears through your eyes. In about 20 seconds, slowly and gently open your eyes. I was like your husband where my erosions were getting worse and worse and I have used this since July 2004 and been erosion free since.

Also, if you do get an erosion, lay on your back, try and relax and keep your eyes closed for at least 15 minutes and add artificial tears for pain. Don't blink for 15 minutes as that will make the erosion worse (and in some cases much worse) just keep your eyes closed and add artificial tears as needed.

Best to you,
Mike

 
Old 05-16-2008, 06:58 AM   #6
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frankh HB User
Re: PTK and recovery

Quote:
Originally Posted by ember919 View Post
Hi everyone,

On the 1-10 scale of miserable, where did your recovery fall? And how long do you think it took to feel "normal", or do you ever reach that point? Has anyone had to go through two PTK procedures?
I had PTK several years ago for severe erosions (occurring at any time of the day), and a few years since I've looked/posted on these boards.

Seems like the docs always say it's going to be several days of erosion-level pain. Mine was nowhere close to that, and it was the best thing I ever did. I didn't even bother with the pain meds, (discomfort: Some, for a few days. Pain? maybe 4/10 for a day). Vision was fine again in a week or so - in fact it's probably better now that the cornea has been smoothed by the PTK (I'm at 20/10 with glasses). Eyes are a little drier, but not much. I use Genteal Gel Severe at night.

I went from almost daily erosions to never having another one again. That former life was filled with unmanageable erosions at work, in meetings, at dinner, on vacation, and at night that caused severe exhaustion, and now I don't think about it at all. With certain dystrophies, erosions occur spontaneously so the underlying layer has to be repaired.

If I start getting erosions in my other eye (and there are signs that the dystrophy is beginning to affect it), I'll get PTK for that eye with no hesitation. I had a very experienced surgeon.

Good luck to your husband,
frank

 
Old 05-16-2008, 12:30 PM   #7
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Evie4 HB User
Re: PTK and recovery

ember...

regarding the numbing drops. I received some. It was 1% numbing medication (the stuff they use before surgery). The instruction was once an hour. It doesn't last that long. And when you are in serious pain, it doesn't feel like it is having any affect.

To answer the question directly on the 1-10 scale. I would say for me at 7 months post surgery, it is 9. I have occasional scrapes at night, seems it happens when my eye isn't lubricated enough and when allergies and medications contribute to drying my eyes. Those scrapes as all call them hurt, but subside and I'm fine in 10-15 minutes. Initially, it hurts, but doesn't linger like an erosion. Who knows, I might find myself having to do the surgery again if that should become routine, but I would do it before going through the misery I experienced in the past.

 
Old 05-16-2008, 04:55 PM   #8
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ebmd HB User
Re: PTK and recovery

Quote:
Originally Posted by Evie4 View Post
To answer the question directly on the 1-10 scale. I would say for me at 7 months post surgery, it is 9.
Hi Evie -

Are you using "10" as miserable and "1" as comfortable? Misery of 9 out of 10 sounds really really bad, but you would get PTK again?

Just so the original poster is clear - when I gave the pain a 3/10 for a few days, that meant not much pain. After a week or so, I was at 1-2/10 (no discomfort).

Just wanted to make sure we were using the same scale...

ebmd

 
Old 05-17-2008, 08:05 AM   #9
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Re: PTK and recovery

ebmd,

Thanks for pointing out my scales references. In terms of pain, I was using the same scale as you, 10 being the greatest pain. In my overall rating of the experience I meant 10 being the most positive. Having said that, yes, I would do it again. Even a really painful day post surgery wouldn't keep me from doing it again.

Evie

 
Old 05-18-2008, 08:02 AM   #10
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ember919 HB User
Re: PTK and recovery

Thanks, everyone, for all the input. This is really helping my husband to feel more comfortable with the idea of PTK. I think the best part is hearing that he won't be in 5 to 6 days of utter agony, which is what I think he had come to expect. Doc has backed off a bit on pushing the surgery so soon, probably because the latest erosion had finally decreased a bit at last check.

My husband will have to travel for a couple of days next week and I know he's just dreading that whole idea - the dry airplane air, hotel air systems and linens.....bleah! Plus he is going to a baseball game one night and I half-seriously tried to talk him into wearing protective goggles! But he'll be well armed with drops and ointments and will still be wearing a BCL, so hopefully there will be nothing to impede the progress he's made thus far.

Once he's back, however, the we'll probably start talk of PTK again and try to figure out a time to get it scheduled. We're both so nervous..........

 
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