Neuroopthamologist?? Is an eval by one needed?

[autumnn]

Hi All- After reading the thread in the medical literature part of the forum I started to wonder about cornea pain being caused by cornea neuralgia. I know that many of us have clear signs and symptoms that correlate with dry eyes (aqueous defficiency, poor tear film, etc.) but to me it seems important to rule out corneal neuralgia as well. Is this something that a corneal specialist can see or do you need to go to a neuroopthamologist to rule it out? I also am confused about the signs and symptoms of this scary condition......if anyone knows more please post, that would be helpful.
Thanks

[Lucy]

Autumnn, I have been seen by a neuroophthalmologist a couple of times. They did nothing really that the other eye docs had not done. I can't speak for all, but it didn't help me. If you have a neuralgia in your eye, I don't think a doctor can "diagnose" it. I have trigeminal neuralgia from Lasik surgery in one eye. Some time later, the Sjogrens came in and went to town on my system making this worse and permanent. No doctor has ever agreed with my diagnosis. If they cannot see it, they cannot tell you about it. That is my personal take on things. I am taking Lyrica for Sjogrens and it has helped the eye pain (neuralgia) about 50%. I also notice other nerve type symptoms are less.

I just hate to see someone trying to find a diagnosis when it's possible they may not ever get the word. If you can get a doc to treat the symptoms, that is a good thing. Lucy

[autumnn]

Hi Lucy- Thank you so much for your response. It is a confusing subject and I am a worrier as I am sure you can tell by my posts. How did you know you had neuralgia from Lasik and did it come on immediately? What are the symptoms? Does a neuroopthamologist run different tests than someone like a corneal specialist? I was seen by a corneal specialist and he did not mention anything about neuralgia. Lyrica sounds like a great answer for you- do you have side effects?

Because I have MGD and bleph I am always told that my tear film is the cause of the pain- but, after I read that article on corneal neuralgia I started to wonder...

Also, I called my last opthamologist (Dr. Jacobs) and he and I spoke extensively. He stated that my symptoms seem out of proportion with my clinical picture- ie I feel much worse than I look or test- he said it might be a good idea to be checked out by a neuroopthamologist and he gave me the number of a neuroopthamologist that he believes is one of the 10 best- luckily he is in San Diego. I think that I should probably wait awhile- if Dr Toyos believes 90 percent of my glands are blocked then certainly that could also be the cause.

This is all so confusing!

[Lucy]

Autumnn, I'll send you a PM this evening. Lucy

[sazy123]

Hi Lucy- Thank you so much for your response. It is a confusing subject and I am a worrier as I am sure you can tell by my posts. How did you know you had neuralgia from Lasik and did it come on immediately? What are the symptoms? Does a neuroopthamologist run different tests than someone like a corneal specialist? I was seen by a corneal specialist and he did not mention anything about neuralgia. Lyrica sounds like a great answer for you- do you have side effects?

Because I have MGD and bleph I am always told that my tear film is the cause of the pain- but, after I read that article on corneal neuralgia I started to wonder...

Also, I called my last opthamologist (Dr. Jacobs) and he and I spoke extensively. He stated that my symptoms seem out of proportion with my clinical picture- ie I feel much worse than I look or test- he said it might be a good idea to be checked out by a neuroopthamologist and he gave me the number of a neuroopthamologist that he believes is one of the 10 best- luckily he is in San Diego. I think that I should probably wait awhile- if Dr Toyos believes 90 percent of my glands are blocked then certainly that could also be the cause.

This is all so confusing!

Autumn can you describe what the pain you feel is like?

Is it a burning pain with dryness or something else.

My dry eye clinical picture doesn't really match the tests or the opths that say its mild. But the last doc did a osmoloty tear test which confirmed my DE was severe (on a good day). I do think that's typical of MGD sings not matching up with what the tests say. My TBUT test however does match up- only time was taken 5 seconds, and the doc dismissed it despite my symptoms and the lacrimal test being fine

[msienkiewicz]

I have the same problem. I have been told that my complaints are "disproportionate" to my ocular surface. I have severe MGD, yet adequate tears. The burning is insatiable in the afternoons. It is so frustrating to get your point across.

I did see an ocular plastics guy who offered to sew my eye shut - the one I had surgery on - to see if the pain was on the surface of my eye or behind the eye. I keep this in my back pocket. If things get bad enough, I may have him sew it for good. My only question is - would the pain go away if the eye was sewn shut or would it still burn?

Melissa

[autumnn]

Sazy I have a constant burning in my left eye- sometimes it is worse than others- mostly when I am on the computer or underneath a fan. It also is the eye that usually has the lower shirmers and TBUT so I guess that makes sense clinically. I have no other symptoms- burning and once in awhile itchiness. Could that be neuralgia? Or, is that a compromised corneal surface due to poor tear film? I hope the latter, especially since I'm embarking on Dr. Toyos' treatment.
Melissa I hope you find a different answer other than sewing the eye shut....but there are days when I feel like having that done too.

[sazy123]

I have the same problem. I have been told that my complaints are "disproportionate" to my ocular surface. I have severe MGD, yet adequate tears. The burning is insatiable in the afternoons. It is so frustrating to get your point across.

I did see an ocular plastics guy who offered to sew my eye shut - the one I had surgery on - to see if the pain was on the surface of my eye or behind the eye. I keep this in my back pocket. If things get bad enough, I may have him sew it for good. My only question is - would the pain go away if the eye was sewn shut or would it still burn?

Melissa

If its bad MGD have you considered IPl i dont want to endose it as we have to wait until several people on here come back with news (4 people including myself are doing ipl from DEZ). I have severe MGD and normal tear production, ocular surface is white/normal nothing wrong with it. I have been told symptoms are out of proportion because my eyes look ''moist'', but its tear thickness thats needed not how moist the eyes look- look at your tear film- is it thin and watery, compare with a friend. How does your eyes feel when you wear goggles. Mine feel good so that shows its stopping the evaporation.

[sazy123]

Sazy I have a constant burning in my left eye- sometimes it is worse than others- mostly when I am on the computer or underneath a fan. It also is the eye that usually has the lower shirmers and TBUT so I guess that makes sense clinically. I have no other symptoms- burning and once in awhile itchiness. Could that be neuralgia? Or, is that a compromised corneal surface due to poor tear film? I hope the latter, especially since I'm embarking on Dr. Toyos' treatment.
Melissa I hope you find a different answer other than sewing the eye shut....but there are days when I feel like having that done too.

Im not a doctor but my honest opinion is that its a compromised ocular surface pain due to tears evaporating to quickly. How do your eyes feel when your in the shower or wear goggles. The fact that next to fans and on the pc its worse is telling imo. Both my eyes burn constantly some days, other days they are more dry, but i have no pain when my tear film comes back due to an illness and i can notice the difference because the difference of glossiness and thickness is dramatic. If theres inadequate tears the nerves in the cornea will be exposed to the environment, its like having an open wound and getting salt in it. Theres more nerves in one small area of the cornea that anywhere else in the body so it makes sense that there will be pain if exposed. My two cents anyway lol.

[autumnn]

I have never owned goggles but my eyes feel good (for a short while) after they have been steamed. Wrap around glasses help also. Lately I have been waking up without pain but as the day goes on the burning comes back. I imagine it has to do with the occular surface being compromised.

Also, in the past I had this kind of burning and it went away on its own for about a year- perhaps that means this is not corneal neurology....I think just reading about it freaked me out....

I am choosing to trust Dr. Toyos- if 90 percent of the glands are blocked and I have that kind of tengelesia (sp?) it is bound to cause burning- right?

And Sazy, I know of one more DEZ member going to Dr. Toyos soon as well.

[msienkiewicz]

I do agree with you both 100%.

The burning is worse in the afternoons and evenings, and yes the tears get more watery.

I wear my goggles 24-7, but find that the lacriserts help immensly.

Sometimes, every few days or so, I add an extra drop of restasis in the afternoon. That seems to help as well. It could just be the castor oil in the drop. I bet it is.

I used to use refresh PM under the eye during the day to help with the burning. This worked too; I could used drops less often, but I was too worried about clogging my glands further. I don't really think they are clogged though, just not working.

What to do, what to do. I have just been opting for comfort lately.

Did either of you get relief by Doxy in drops or oral. I was thinking of trying that, but my doc says no. He wants me to do azasite again, but I thought that made me drier, possibly the BAK...

Is doxy always a script?

I do wish you both the best. You are so young to deal with this. I am "only" 41, mother of 3. I still feel so young and so much I want to do. We WILL find an answer. I'm praying this is it.

Melissa

[nahzee]

My -personal- experience was not positive and I would say, avoid it unless you think you really need it. Elsewise you're just spending a lot of money to hear the same old tale sung by a specialist.

[Lucy]

Nahzee, you say it so well. Lucy

[autumnn]

I gave in and got some Wileys- now I can see why everyone raves about these things. I look silly as all get out but alas, after a few hours in them the left eye pain is gone but there is some dryness still...maybe I can rule out my horror of it being corneal neuralgia and chalk it up to poor tear film and exposed corneas. If my insurance will pay for a neuropthamologist maybe I'll do it but I am more and more convinced now that Dr. Toyos is right about the glands.

[mary kenny badami]

autumnn wrote earlier in this thread:

I have never owned goggles but my eyes feel good (for a short while) after they have been steamed. Wrap around glasses help also. Lately I have been waking up without pain but as the day goes on the burning comes back. I imagine it has to do with the occular surface being compromised.

autumnn, autumnn, autumnn -- I went to bed last night thinking that if I weren't so tired, I was going to reply to ask -- why not goggles? You've been very serious about pursuing other solutions, and there is so much positive testimony on this bulletin board from people who've been helped. Never wore goggles myself because I found a solution for my moderate dry eyes, which are now manageable (= Dr. Holly's drops). However, I assume that a set of goggles -- even high-priced goggles -- are a lot cheaper than a single visit to a specialist neuroopththalmologist.

So here I am this morning, discovering that in the interim you have posted that you

. . . gave in and got some Wileys . . .

Well, good for you! Never wore goggles myself, but have spent time with a few dry eye pals for whom they are part of a practical daily routine, including wearing them in public.

I vote that you keep on trying more moderate and conservative solutions rather than assuming that you have a terribly dire eye disease!