Confocal Microscope - Convincing my doctor

[Cali]

I want to know if I have post-LASIK nerve damage. A confocal microscope is the only way a cornea specialist can see your actual nerves. Confocal microscopes are apparantly somewhat rare, usually located a large university eye centers (from what I understand).

I have an appointment tomorrow at a university eye center that has one, "one" located in their operating room. Most doctors treating dry eye aren't really focusing on cornea neurology post-LASIK (as most don't have access to a confocal microscope). I think they're just interested in the ocular surface.

How do I convince a doctor to get me into that miscroscope. I had LASIK 8 years ago and have seen many doctors (10-15 over the years), telling them I have a stinging, firing, intermittent pain in my right eye. Nobody has been able to address it and I am now suffering with horrible dry eye on top of the nerve firing feeling. I don't want to leave with the Restasis, Plugs, Cauterization treatment plan. I am already on a dry eye plan (serum drops and probably plugs at some point).

Any ideas on how to speak with my doctor to express the pain properly so I can get under that miscroscope to address possible cornea neurology?

[Cali]

Well, didn't get in to the confocal. I even begged but didn't get anywhere. I went to the Shiley Eye Center in La Jolla. I was told they had one in their operating room. The doctor said it really wouldn't help me to know if I have aberrated nerves or anything about the nerves because the only thing they can do is prescribe amitrypline or garbantan (sp?).

He did say I could go to the "eye bank" and pay about $300.00 to get a confocal. So I think I'm being "neurotic." That's actually kinda funny. So how will it help me to see my wonky post- LASIK nerves? It won't. It will confirm what I already know and probably just freak me out. Long day today. What really tops it off is seeing all the doctors in the refractive surgery wing in GLASSES!!!!!

[Cali]

Oh, I should add that I have a dry eye doctor that I LOVE!!! I went to Shiley on my own, not at the direction of my doctor. I keep fighting this "need to know" how my nerves look which does not serve me. I know all the nerves did not all grow back and that some in my right eye are firing incorrectly. Why do I so strongly feel the need to physcially see how bad they are? Why do I feel the need to further self-punish myself for self-mutilation LASIK? I'm guessing I'll stop this horrible ruminating as my pain resides.

[Rebecca Petris]

I can totally understand why you'd want to see. For several people I've known over the years it's been validating to see right there on the screen what is causing the pain (that's assuming you've got someone with you who knows what they're looking at). Though when there's serious anxiety going on I think that even with this kind of info it will tend to just get rechanneled rather than be dealt with by the info.

The thing with confocals is, they're used for research and not really integrated into clinical practice so far as I know. They don't have a good way to quantify nerve damage and till they do doctors will continue to think of them as devices that are 'interesting' but not necessarily used to guide treatment decisions.

[tommyboy]

My Doctor, Pedram Hamrah referred to me by BFS ... Who is a doctor at the Massachutetts Eye and Ear Infirmary uses the confocal to see exactly what is going on with the nerves. They know what healthy nerves look like and know what unhealthy or simply the absence of nerves look like. It also provides a baseline and a physical way (with pictures) to measure progress or lack of progress. I am disappointed that the machines are not in every LASIK center so they can detect early on weather or not there is nerve damage so they can provide the appropriate treatment plan and take some of the guessing out or the usual "it's normal for 3 months, 6 months, 1 year ... bullshit unscientific nonsense they tell you backed by no physical evidence.

Anyway, this topic strikes a nerve with me.

Stinging, firing, intermitting pain is what I have Cali. How you have been dealing with this for 8 years is astonishing to me. And you still have not given up hope, that's awesome.

Not sure what advice to give you. I would easily drop $300 for the confocal, but to Rebecas point you need to have confidence they know how to properly read it. Then you need a follow up appointment 2 months out to measure the progress.

Anyway, keep us posted on your progress/decision. Your such a fighter and that is so inspiring.

Cheers,
Tom

[Guest]

Regarding the confocal, for sure if your nerves show up as wonky/missing or whatever, that would totally validate all of your symptoms. But, you also might end up like me with beautifully normal looking nerves and no physical explanation for your symptoms. But, as Dr. Rosenthal pointed out to me, the fact that my nerves LOOK normal, doesn't mean that they are functioning properly (they can't measure that yet).

In any case, seems to me it's worth looking into neuropathy treatments... to my shock, if I take dextromethorphan cough syrup (OTC, as directed on the bottle), it helps my foreign body sensation and stinging that I am prone to. (Started this per Dr. R's recommendation). I keep stopping it to see if I'm imagining the difference, and sure enough, more stinging, more foreign body sensation etc. Granted, this could still be all in my head, I know, but it's interesting to me all the same. Plus, makes me hopeful that if things get worse, I could try heavier Rx neuropathy meds and maybe have a hope of improvement.

[sunshinelover]

Saag ,
Have you had the same kind of problems all since the lasik , or has it become better /worse ?
What is the reason for dryness - evaporative or aquatious ?

[Rebecca Petris]

I am disappointed that the machines are not in every LASIK center so they can detect early on weather or not there is nerve damage

Ignorance is bliss.

[Guest]

Saag ,
Have you had the same kind of problems all since the lasik , or has it become better /worse ?
What is the reason for dryness - evaporative or aquatious ?

Before LASIK, my eyes felt normal - used the computer a TON, never protected my eyes from drafts etc... the only clue I had of what was to come from LASIK was the fact that I couldn't tolerate contact lenses (eyes felt super dry if I wore them).

Eyes have had major issues ever since LASIK - they slowly improved over the first couple of years to the point where I could use drops only once every 1-2 hours (no moisture chambers, no plugs, no cautery, no serum, no nothing except for preserved Systane as per LASIK dr's recommendation)... then they plateau'd for maybe a year, then declined to the point where by 2009 they were total crap (drops didn't work, couldn't have worked at my job (lucky I was on mat leave at the time) and I couldn't handle reading or watching TV, started wearing moisture chambers etc.) When LASIK dr. still insisted that I was doing "GREAT!" (picture big cheesy grin on his face), I got very worried and decided it was time for a new dr. and a second opinion (I mean really, how he could tell me I was doing great when I'm telling him I'm not capable of even going to work in that state is beyond me) - been with the new dr. ever since and slowly clawing my way back to a more and more functional state ever since.

I have both evaporative and aqueous issues.

Needless to say, in hindsight, I would have been better off getting a second opinion much sooner... shouldn't have put so much faith in my LASIK dr Will never put 100% trust in a dr. again... new motto is "Trust, but verify."