CT Scan & When are Eyes "Bad Enough" for Sclerals?

[DryEyeSurvivor26]

First of all, I’m feeling quite discouraged at the moment. For the past two months I have been experiencing significant under eye pain that my corneal specialist has been unable to explain. He has referred me to an orbital specialist who has ordered a CT scan, and has suggested that the under-eye pain may be sinus-related. I’m really hoping it is because this would provide a clear problem that could be treated. Has anybody had a CT scan that has shed light on pain around the eye?

Secondly, even if they are finally able to identify the source of and resolve this strange under-eye pain I am having, I am still going to have the everyday burning and discomfort from dry eye. I normally have multiple small punctate erosions on both corneas during exam, but no large erosions or ulcers. In the morning, I generally either can't open my eyes before I put drops in or I am able to open them, but have to put drops in immediately to alleviate the dryness. On occasion, I have pain shoot through my eye upon opening them, which I assume indicates that I just developed an erosion. Throughout the day, even just blinking sometimes drives me to distraction as my eyelids can feel like sandpaper.

Anyway, despite my constant discomfort and moderate staining, my opthamologist says my eyes look "good" and aren't bad enough for sclerals. My question is then how bad do eyes have to be to qualify for sclerals? I live right in Boston close to BFS but I can’t pursue sclerals without a referral, and I’m frustrated because I currently have good insurance that would cover the cost, but will likely have to change insurance companies soon. Does anybody know of a good doc in Boston that may be more understanding and empathetic than my current doc and who would possibly refer me? Or am I just simply not a candidate because my condition isn’t considered bad enough even though I consider it debilitating?

[odydnas]

Hi! You do not need a formal referral letter for BFS. I have spoken to the patient coordinator, and was told that if you do not have a letter, you can just submit medical records from your eye doctor. I do know someone who just sent medical records in, and she was accepted as a patient at BFS. It would be best for you to contact Brenda Diaz (bdiaz@bostonsight.org) who is the patient coordinator and explain your situation. She is very understanding and can help you get started on the process. She is also very busy, so keep trying.

Also, your eyes do not need to look "bad" to qualify for sclerals. The wonderful thing about BFS is that your symptoms and how it affects your life is important to them too, not just the clinical signs.

I do not know of any doctors in Boston, perhaps other members can help you with that. Searching for a doctor can take a while, so I would recommend on contacting Brenda right away to see what you can do rather than waiting until you find a doctor.

Good luck and keep us updated!

[RobinH]

Dryeyesurvivor26,

I just came back from BFS. I could not get a referral from my doctor either. He thought I was making a big mistake by going there.....said I was going to ruin my eyes (duh, how much worse could they get?) He initially didn't even want to fax my records to BFS, but I told him that they were my records and that if necessary I would go to his office to pick them up and fax them myself, as he legally has to release them to me. He finally relented, but it wasn't easy. But BFS was great. With only the records of my past contact lens fittings, they approved me in 5 business days. My advice is do not let your doc hold you back if you've done your research and this is what you want to try.
If you have insurance to cover it, thats all the better. BFS does insist on getting a precertification from your ins company before they will sign off and allow you to start without paying out of pocket, and they tell you that is normally takes 8-10 weeks to get the precert, but usually the process is somewhat faster than that, and you can start before they get the precert if you are willing to underwrite whatever portion the ins co does not end up paying.
My impression is that you don't have to have terrible looking eyes in order to be accepted at BFS.
If you have more questions, let me know.

[DryEyeSurvivor26]

Thank you everyone for the advice and support! I really appreciate it. I just want to be pain-free (and I know so many others on here are struggling toward the same goal as well)!!

Odydnas & RobinH -- That is very valuable information about a referral not being absolutely mandatory. I am going to wait and see what happens with the CT scan, which I am having this Friday and from which I should have results by sometime next week. Hopefully the terrible pain around my right eye is indeed from sinusitis, which they should be able to treat with antibiotics (I do have chronic runny nose so it would make sense that I have sinus problems). If the CT scan doesn't reveal anything further, I will definitely actively pursue BFS, and I might very well even if the under-eye pain is resolved.

Chemia -- That is interesting that your sinuses showed up as inflamed on the CT scan but your doctor said it would not be causing pain around the eye. My doctor said exactly the opposite; he seemed to think that inflamed or infected sinuses might be precisely the culprit behind all this around-the-eye pain I am having, but we'll have to see. Have you tried a course of antibiotics just in case sinuses are contributing to your problem? If you have not and are still experiencing the pain, it may be worth a shot.

Thanks again everyone and I will keep you updated!

[DryEyeSurvivor26]

Hmm why does so much of what doctors say have to be so conflicting? Well I'm sorry you are still dealing with the pain but I'm glad cutting back on milk products has helped. Hopefully there will be more relief for us both soon!

[spmcc]

I'm also amazed at all of the conflicting information, diagnoses, and advice!

And I laugh when I read the side-effects of meds now (I do this religiously because of dry eye). Example:

May cause drowsiness, insomnia, constipation, diarrhea, loss of appetite, weight gain, depression, euphoria...

[Guest]

And I laugh when I read the side-effects of meds now (I do this religiously because of dry eye). Example:

May cause drowsiness, insomnia, constipation, diarrhea, loss of appetite, weight gain, depression, euphoria...

That is SO true! lol

[mary kenny badami]

Euphoria! Yes, that is precisely the one and only side-effect of meds that I ever would want: EUPHORIA !

[RobinH]

Euphoria! How come that's probably the one and only side effect I have NEVER gotten

[Lucy]

Are any of you taking Lyrica (or neurontin) because of pain in the eye(s)? This is not necessarily dry eye pain, but a nerve issue. A real pain in the eye. After suffering post-lasik, plus Sjogrens, for 9 years I was prescribed Lyrica and it cuts down about 50% of the trigeminal neuralgia in my bad eye.

Also, just because you get BSL's it doesn't mean that you will be able to wear them. I have a set in my kitchen cupboards collecting dust. Yes, they were paid by my insurance company for the lens. I made 3 different trips to Boston and still my lens do not fit me. I know what it's like when you're desperate. Lucy

[nycdryeyegirl]

"Does anybody know of a good doc in Boston that may be more understanding and empathetic than my current doc and who would possibly refer me? Or am I just simply not a candidate because my condition isn’t considered bad enough even though I consider it debilitating?

Hi!

I would highly recommend seeing Dr. Stephen Foster (located in Cambridge, Massachusetts) who is considered one of the top ocular immunologists in his field. He sees patients who have all kinds of inflammatory eye conditions affecting all parts of the eye (cornea, conjunctiva, retina,etc).

My eye doctor who did a fellowship (under the auspices of Dr. Foster), knows as much as if not more about rheumatic diseases than some of the rhuematologists that I have seen in the past!

If you want a good doctor who will take you seriously, then Dr. Foster fits the bill!

Dr. Foster's office can be reached at 617-621-6377.

I hope I provided some useful information for you.

Pam

[DryEyeSurvivor26]

Hi all,

Thanks again for the suggestions. The CT scan came back clean, which means I do not have sinusitis or a sinus infection. Trigeminal neuralgia was suggested by one doc because the pain tends to be worse in one eye than in the other, but the neuro-ophth I saw the other day ruled that out because the pain is generally not sharp pain -- more of a dull, achey pain that sometimes becomes really intense. I think it must just be dry eye pain after all? Anyway, I have contacted Brenda Diaz at BFS and will definitely consider seeing Dr. Foster when I am back in the States in June; will just have to deal until then.

Thanks again! Will keep everyone updated.

[Stanza]

Hi, I don't think that my case history reflects yours but I wanted to encourage you to keep trying on this potentially being a nerve problems.
I have facial pain, it was suspected as sinusitus until it turned out it was my jaw, I have tmj disorder, and it's given me cranial nerve damage, I'm currently on the end of a 5 year battle to find out what to do about a lot of pain symptoms.

I now suspect the nerve damage is closely linked to my dry eye, which started around the same time, a specialist my physio knows confirmed it could be.

anyway, keep plugging at it. On Sclerals - I think they're always worth a shot.

[Lucy]

I'm with Stanza in that I have regular dry eye pain (Schirmers= zero in both eyes) plus some nerve damage done to the left eye during Lasik surgery. Until I was prescribed Lyrica about a year ago by my rheumatologist (for neuropathy from Sjogrens and fibromyalgia), nothing ever helped my eye with the nerve pain. The Lyrica takes the eye pain (not the dry eye pain) but the nerve pain in the left eye down about 50%.

If your dr suggests trigeminal neuralgia, I think they would be above average in at least wanting to explore your pain. Most docs won't even admit that might be a possibility. Lucy

[UTPharmer]

Drugs Drugs Drugs....

I'm also amazed at all of the conflicting information, diagnoses, and advice!

And I laugh when I read the side-effects of meds now (I do this religiously because of dry eye). Example:

May cause drowsiness, insomnia, constipation, diarrhea, loss of appetite, weight gain, depression, euphoria...

In response to that, yes, everything under the sun could be written as a possible side effect. If someone reports having had a symptom during drug trials, they are required to include that as a possible side effect. It might not necessarily be because of the medication, but if you fart, and you said that the medicine made you fart, they will report flatulence as a side effect. That's why almost every medication can cause constipation, diarrhea, nausea/vomiting, etc. Many of those people would have had those problems during that period regardless of being on the medication that the SE was reported for. Then again, many of the drugs do cause GI upset...they are chemicals.

As to Lyrica, it does have the potential to cause euphoria. It's an abused drug because it gives some kind of head high. I don't really understand it because I haven't used or abused it. Anecdotal evidence is always the best... Another drug that causes a sense of euphoria is Adderall. Why do you think kids are making so much money selling it? It's not just for test taking purposes for people that don't need it to focus. They really like the high they get when they take it.