4.5 months - DLK yes or no

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4.5 months - DLK yes or no

Postby prince headley » Sat Dec 01, 2007 1:26 am

I had LASIK on July 12, 2007. I had monovision and my current vision is fine (not perfect but fine). Left (reading) is great: 20/20. My right distance is 20/20, but varies between 20/25 and an occasional 20/15. So why am I writing?

Here is my story -

Surgery week 1 uneventful. 20/20 vision day after surgery; 20/15 at one week visit for distance.

Week 2 pain in right eye, photophobia -
Didn't see MD's OD until week 3 - she diagnosed an infiltrate. First put me on antibiotics to sterilize the eye and then Pred-Forte and the antibiotic. Eye got better slowly. I asked if it was DLK and she said no, but was unclear what it was. Said she didn't think it was an infection. She puts me on restasis.

Weeks 4-6 -left eye bothering me too. Foreign body sensation. Saw MD and he said Right eye was getting better (still not comfortable) and put me on Pred-forte again, this time in both eyes. I asked why infiltrate? He said it was not an infiltrate and the OD should not have said this. He said it was interface debris in the right eye. Left was just irritated. MD takes me off restasis.

About 8 weeks post-op, eyes felt better, not great. Told by MD problem was interface debris in right eye still there (not in visual axis).
I followed drop routine and titered down. Felt I was seeing worse. Vision was 20/25 in right eye. At week 9 go back on pred-forte 1 x per day in left eye because of foreign body sensation; 2x day in right eye to reduce regression. Says he can enhance if necessary.

At about week 9 -call MD and run through list of questions. He is not worried; tells me the debris is not a problem; the drops are for regression and to make me comfortable; no DLK, etc.

Go off drops after 3 weeks (12 weeks post-op). Feel pretty good. Eyes dry, but I assume that is to be expected. Vision seems not to have changed from the 20/25, but don't check it.

3 months post-op, I take an international trip for work. I am less attentive to my Refresh and come home with very painful eyes. Photophobia develops.

I go to a regularly scheduled follow-up visit (3.5 months post-op) and am told that I have inflammation under both flaps. I am put on Lotamax for 4 weeks. Titering 4X/day; 3x/day; etc. After 2 weeks, I am scheduled to take another international trip and am worried so I decided to visit my pre-op regular OD just to take a look.

The OD diagnoses DLK (mild) in both eyes and keeps referring to it as the Sands of Sahara-classic. I feel sick. back on Pred-forte 4X/day both eyes with the weekly titering routine. By the way my distance vision is 20/15 at this appointment.

At 4months post-op (4 days later) - I demand an immediate appointment with my LASIK MD and he scoffs, telling me it’s not DLK and the OD does not know what he is talking about. He says my eye flaps are inflamed and I am an aggressive healer. He wants me to titer off of the Pred-Forte back to the Lotamax. He says he is not worried about my vision 20/20 at this time. I feel my eyes are drier. He puts me on restasis and hydro tears. He also recommends I take some nonsteriod anti-inflammatory like Advil.

I return for a follow-up with my regular now 2nd opinion OD. He says the DLK is 50% improved but my eyes are very dry. He recommends restasis and I tell him I am already on it. He agrees with the Lotamax but wants me on higher doses. My vision is 20/20 distance. FYI- my reading has always been good.

When my eyes feel dry, my vision is fuzzier. I know this is typical. Just stayed in some hot hotel rooms and could not see when I first got up. That resolved quickly.

OK -so I know I am having trouble with dry eyes and I am treating that aggressively. Tears, Refresh ointment at night, restasis, humidifiers.

But do I have DLK or not? If not, what is it? DLK is an infiltration under the flap at the interface. My LASIK doc agrees there is inflammation under the flaps but says it is not DLK. I asked him what it was and he said it more like "haze." He said it was good that I did not have LASEK. He said DLK develops immediately post-op and threatens vision. I know it can also come later (delayed onset), but I agree there is no quick progression.

I can go for a third opinion; but really don't want to. My eyes hurt. The Lotamax makes them feel better (hurt-wise), but they then feel dry. I really want to know what is under my flaps.

Thanks much,
PH
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Re: 4.5 months - DLK yes or no

Postby LasikExpert » Tue Dec 04, 2007 2:18 am

prince headley wrote:I asked if it was DLK and she said no, but was unclear what it was.


If it was DLK and untreated for three weeks, you would have severe scaring and very poor vision. The doctor's analysis makes sense.

prince headley wrote:He said it was interface debris in the right eye.


Probably splitting hairs on the terminology. You have something under the flap that you don't want there. Call it what you will.

prince headley wrote:3 months post-op, I take an international trip for work. I am less attentive to my Refresh and come home with very painful eyes. Photophobia develops.


This sounds like an inflammatory response. Your vision probably was a bit worse too.

prince headley wrote:The OD diagnoses DLK (mild) in both eyes and keeps referring to it as the Sands of Sahara-classic.


Little about what you described sounds like "classic DLK". This sounds much more like inflammation at the interface due to foreign body. You've got gunk under the flap. The steroids will reduce the inflammation, but they are apparently treating the symptoms, not the cause.

prince headley wrote:But do I have DLK or not?


I have two opinions about this. The first is that you do not have Diffuse Lamellar Keratitis (DLK), but that you do have infiltrates at the flap interface that are causing inflammation.

My second opinion is that my first opinion is not worth the bytes used to transmit it. You need an evaluation by a corneal specialist who really understands infiltrates, not someone over the Internet (even someone knowledgeable).

prince headley wrote:He said it was good that I did not have LASEK.


Ahhh. Say what? If you had had LASEK, you would not have a Lasik flap to get infiltrates under. That makes no sense at all.

prince headley wrote:He said DLK develops immediately post-op...


Not always. Late onset DLK can occur spontaneously or due to ocular trauma.

prince headley wrote:... and threatens vision.


Absolutely.

prince headley wrote:I can go for a third opinion; but really don't want to. My eyes hurt.


You need a third opinion, but not from your Lasik surgeon or an optometrist. Seek the corneal specialist at a university affiliated teaching hospital for an evaluation. Ideally (you are not going to like this) you would have a flap lift, a culture taken, the area flushed, and the flaps repositioned.

prince headley wrote: I really want to know what is under my flaps.


The only way to know is to lift and culture.

It is likely you will continue to have this on-and-off inflammation if the infiltrates are not removed. The longer you wait, the more difficult it can be to remove them.
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Postby prince headley » Tue Dec 04, 2007 2:44 am

Glenn,

I live in Fargo, ND. I can go to Minneapolis. There are corneal specialists here. Do you have any advice on how to find someone?

Thank you very much for responding.

PH
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Postby LasikExpert » Tue Dec 04, 2007 2:48 am

Yes, I will email you directly.
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Postby prince headley » Tue Dec 04, 2007 3:07 am

Thank you very much.

PH
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Postby prince headley » Sun Dec 09, 2007 7:39 am

I received a telephone call from my Lasik MD after he received my
request to send his records to a well known cornea specialist. He was
effusive in his respect for the specialist (including that she was
pretty and single). OK - that is part of his personality.

However, he was - as always - reassuring and comforting. I told him it
was worth every penny of my money to learn I was being over concerned.

I will be frank: I like my LASIK doc, but I have no confidence in him
right now. He is very cavalier. I want facts and information, not mere
reassurance.

I originally asked for LASEK.

I am worried that he is being extra concerned because of that request
and because, unfortunately, I am an attorney, albeit one who thinks
lawsuits are very destructive.

He told me the other day as he has before that what I have is like
"arthritis of the eye." Well, that is not reassuring to me; an RN who
practiced for over 10 years before law school. The inflammation from
arthritis can destroy your joints with the scarring. ICK. The good news
is I believe/hope he is using the term inappropriately.

No matter what happens here. I have a message for physicians. Be frank,
straightforward, and stop treating patients like they are stupid. For
many, if not most, of us, it is far from reassuring.

Thanks all for listening. My appointment is next Thursday. I promise
to keep you updated.

Glenn - thanks for your help, frankness, and advice.

PH
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Postby DryEye » Mon Dec 10, 2007 4:07 am

There are two excellent refractive surgeons part of this organization that you could consider visiting for a top notch opinion
One is in Minnesota (I bring that up because you mention it in your string)
the other is in Kansas and when I brought up his name throughout my journey with doctors there was immediate Respect.
I visited him for an opinion and found him to be excellent.
Best & keep us posted.
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Postby prince headley » Fri Dec 14, 2007 6:39 am

:D Hello All,

I saw a wonderful MD today in Minneapolis.

In my profession, this is a crazy time at the end of the year. I decided I had no choice. I was too worried, so my spouse and I took the day and traveled.

Thank goodness she helped me with my worries. She did a lot of tests that I have never had done before to check the integrity of my corneas. She ultimately decided that everyone was wrong and that my inflammation was more superficial - she conceded it could look a lot like DLK.

Although I never had any dry eye problems pre-op, she thinks I have chronic blephoritis and that my last trip tipped me over into crisis.

I will get out of it.

I will do everything as directed and report back on my progress. I am very glad I went.

Thanks all and Glenn!

PH
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Postby LasikExpert » Fri Dec 21, 2007 1:56 am

I'm glad to hear that you have a diagnosis and treatment plan. Please do let us know how things resolve.

There is probably not much that will make a doctor more worried than an attorney with a poor outcome that is difficult to diagnose. Sometimes there is an overreaction that comes off poorly. It is a very good sign that your doctor appreciated the evaluation of the Minneapolis expert. That kind of cooperation is very encouraging.

I imagine/hope that you have greater peace of mind for the holidays.
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Postby LasikExpert » Fri Dec 21, 2007 2:26 am

prince headley,

Several people in this forum would like to know the Minneapolis surgeon with whom you are so satisfied. Would you be willing to provide your email address so they may correspond with you directly, or perhaps contact the person in this thread.
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Postby LasikExpert » Sat Jan 05, 2008 10:25 pm

prince headley has contacted me directly and authorized me to provide the information about the Minneapolis specialist she used for follow-up care. Any reader who is interested may contact me directly at glenn dot hagele at usaeyes dot org.
Glenn Hagele
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Postby prince headley » Sun Jan 06, 2008 6:21 am

I had a follow-up visit with the Minneapolis ophthalmologist yesterday. Once again, my husband and I took a day and drove 8 hours round trip to see her. (I could have driven this time, but I broke my patella (kneecap) on a recent vacation - this made the trip more complicated, but well worth it).

Apparently, the same morning, my LASIK MD called to see how I was doing. My daughter, who was visiting for the holidays, told him I was on a “road trip.” I will call him back and give him an update. I will also follow-up with him. I am currently struggling whether to go back a third time to MN; my MN doc, greatly reassures me because she reads my file before she sees me (I saw her do this), studies the tests and also takes tests, and has been right about her diagnosis. She is an educator. Before, I had no diagnosis and only a vague idea what was going on. She is also not a fan of steroids.

My condition – I am aggressively treating the blepharitis. My right eye still bothers me a bit. I keep a humidifier in my kitchen, bedroom, and office. I rarely use the eye drops. I soak my eyes (warm) at least 2 times (10 minutes per day); I am taking doxycycline 2 times a day; I use AzaSite on my lid margins; I scrub with baby shampoo after my soaks. It is a pain, but also a miracle. So simple – no steroids.

I went from significant discomfort to mild irritation and my MN ophthalmologist looked at my corneas yesterday and said enthusiastically “excellent!” I am vigilant in this routine. The inflammation of my corneas was real and a problem. It is doing well and that is good!

My vision is improved in both eyes. I have monovision. I have a very slight refractory error in my dominant (right) eye. I read the lines on the chart at 20/20. In my left (reading eye), I see 20/50 with a -1.50.

A couple of comments about my relatively good experience (in retrospect).

1. My LASIK doc is a good guy; I like him: he is, however, cavalier. I wanted to do this procedure so badly and was relatively concerned, but I relied on the recommendation of a friend/neighbor/MD. I decided not to investigate further. Don’t do this. I recently reviewed the 50 questions on this forum. Good idea.

2. My LASIK doc is skilled at the surgery (I think), i.e., I think he did a pretty good job. He is pretty terrible at follow-up. He never paid any attention to my problems until I told him I got a second opinion from my optometrist. He just tried to reassure me and give me drugs with no details. When I asked for details, I felt like a hypochondriac. He is very confident and really doesn’t seem to want his patients to know too much. Either way, my comment to folks is the problem was his follow-up, not his skills. When I told him I was going to the specific doc in Minneapolis, he woke up.

3. Glenn’s comments about me being an attorney worry me. I am 51. I went to law school when I was 33. I am an RN (actively practiced for 10 years). I strongly believe our bodies are our responsibility and physicians are very human. I don’t sue physicians. (Maybe if they were drunk during my surgery, etc.). I do, however, hate the question – what do you do? I have never wanted to answer. When I was a practicing RN, I feared they would think I understood things I did not. Now, I fear, they will fear me.

4. My legal clients have always been savvy. I can’t get away with not explaining; not having my facts straight; not being perfectly frank with them about my knowledge, lack of knowledge, or the fact that the answer may be gray. I want medical providers to start treating all of us like this. I know it takes more time. At the same time, we (patients) need to take more responsibility for our health.

I am probably preaching to the choir. That being said, I will follow up with my LASK MD and (at least) one more time with my MN doc.

Best of luck to all of you and be an assertive, but not paranoid, participant in your treatment.

Regards,

PH
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Postby LasikExpert » Sun Jan 06, 2008 7:01 am

I'm glad to see that you are on the mend. This is truly good news.

I apologize that my comment about being a lawyer caused you concern, but it is a reality that has been exacerbated by a few rather large Lasik malpractice judgements recently.

prince headley wrote:My legal clients have always been savvy. I can’t get away with not explaining; not having my facts straight; not being perfectly frank with them about my knowledge, lack of knowledge, or the fact that the answer may be gray. I want medical providers to start treating all of us like this.


I agree wholeheartedly agree.
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Postby rosecmd » Mon Jan 07, 2008 9:27 pm

Interesting story, glad you are feeling better...I had lasik for mild myopia on July 7, 2007 and I had pretty bad dry eye and was a little overcorrected into hyperopia. I'm 48, so my near & mid-range vision was just crap. My distance vision was is 20/25 and 20/30 - which wasn't bad, outside I see great. Long story short, time helped some with the dry eye, but I must agree completely with you on the eyelid hygiene. Most docs seem to ignore that aspect of dry eye.

My dry eye & associated pain and irritation resolved almost completely when I stopped using so many drops, started to rinse my eyes and gently clean my lower eyelids at the margin where the lashes are, and used warm compresses on my eyes twice a day for 10 minutes. I switched to just Refresh drops (to avoid methylcellulose drops) and used my Restasis as my nighttime drops. Bingo, rapidly improved dry eye.

Now, six months out (had my check-up today) I'm faced with decided to go for a second surgery to eliminate the +.75 & +1.00 hyperopia in my eyes. I will likely proceed with it, as I've seen the expected simulated results and would see so much better mid range & near with the corrections. My lasik doctor, who is a corneal specialist, felt that I would not have such an issue with dry eye this time as I've been on Restasis for six months and it really has helped and because she would treat my recovery more aggressively.
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Postby LasikExpert » Mon Jan 07, 2008 10:26 pm

rosecomd, be sure to let us know what you decide.
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