Back to Square One

[Alix]

So I saw a ophthalmologist on Harley Street, a specialist in dry eye, blepharitis, and CCH amongst other things.

Despite my letter from Moorfields stating I had blepharitis, he told me I absolutely do not have it, either anterior or posterior. Neither do I have CCH - there is a small amount of redundant conjunctiva but it is extremely minute, ie “normal”.

He said my meibomian glands are functioning “normally” in that there is plenty of oil being secreted. My Schirmers Test is “normal”.

However, my TBUT is abnormally low, my tear film is extremely unstable, and there is a lot of inflammation.

I asked him what was the cause, he said it was “complicated” - in other words he did not know.

To address the inflammation he has prescribed me topical steroids to use for one month, despite me saying I had already used them and they did not work.

I don’t think I’m going to bother buying the steroid drops as its just going to be a waste of time. Sure they might work but the inflammation is just going to return once I stop using them so whats the point.

So really I am back at square one. Its been 15 months since I have had burning pain, I see no end in sight.

I’ve now asked about getting an appointment at the Vissum clinic to get PRP drops but I am wondering if they would help control inflammation - I don’t have surface damage.

In the meantime I'm going to carry on with trying to find scleral lenses which fit properly but it's going to be a tall order, there is so much inflammation I'm afraid that putting something on top of it is going to create even more problems......

[TARYN]

Hi Alix, It sounds like the responses I used to get from the doctors I saw until I finally found one that could help me. I felt like I was seeing dry eye specialists but none of them could help. Dr Tseng did prescribe steroid drops the way your doctor did and I did try them but just just like the other times I tried them they did not help once I stopped them. Dr Tseng also thought my CCH was mild but decided since nothing else helped I was willing to try the surgery and it was the remedy for my problems of redness and burning.

[Alix]

The thing is the doctor I saw is a well respected surgeon with decades of experience who performs CCH surgery all the time. Also he knows that my private health insurance will cover all surgery costs so if I had CCH he would definitely have recommended surgery. As it was, he said there was nothing to get rid of, my eyes look "normal" apart from the tear film instability and inflammation.

I now just have to hope I can somehow fit a trip to the Vissum clinic in my schedule and also get sclerals that fit.

[TARYN]

I too saw well respected surgeons. I saw a dry eye specialist at Johns Hopkins and all he suggested was steroid drops. I also had tear film instability. I am wondering if your surgeon has good results with CCH surgery and if he uses amniotic membrane? My doctor uses amniotic membrane as a part of the surgery and I am convinced that is why I had a good result. My doctor didn't push the surgery. I requested it when I ran out of options.
Would your doctor allow you to get in touch with one of his patients who had a good result with CCH surgery.
Good luck with everything.

[Alix]

Thank you I am glad surgery worked for you. In some ways I was disappointed I didn’t have CCH I thought if I had surgery my pain and inflammation issues would go away.

But anyway I am satisfied I do not have this condition. The leading expert in this field in the UK said I don’t have it as well as a senior corneal surgeon at Moorfields. It was a misdiagnosis by a junior doctor which started this whole thing in the first place.

If my glands are working “normally” there must be some other reason for my abnormally low TBUT, unstable tear film and inflammation. My eyes are permanently bloodshot and there is pain in the left eye. It is not allergy as my eyes are not itchy and the pain is unilateral.

I’ll have to carry on with the scleral fittings and get PRP drops, I can’t see what else I can do.

[Topher3]

in regards to your glands, are u referring to all your glands are working normally? however some systemic response is preventing this? i have bad inflammation too i believe, i tend to see more veins popping up and a lot of redness on the sclera where my meibomian glands would touch. do you notice more redness forming or is it staying stabale in regards to veins and things? i believe something is wrong with our immune systems and its creating a problem, like you said, we are very similar cases i believe.

[woodart]

I agree with TAYRN. I have 70 years into dry eye and saw top specialists who wasted my time. I believe some just work off their reputation and you just have to keep going on the hunt until you find one that works for you. I found that it was best for em not to say much and wait to see what they say and then ask questions. Then most of the time I can figure out if they are good for me or just wasting my time. Just like any other medical problem we have. I dislike not trusting them but have seen too many who do not have a clue. The good part is at least today compared to when I first started you have so much more going for you. There are quite a few docs now that can help. 50 years ago all you got was to put drops in and you will be fine. Good luck and keep trying. You will find one if you keep pushing.

[Chemia]

If my glands are working “normally” there must be some other reason for my abnormally low TBUT, unstable tear film and inflammation. My eyes are permanently bloodshot and there is pain in the left eye. It is not allergy as my eyes are not itchy and the pain is unilateral.

Alix,

Your symptoms sound exactly like my symptoms when I was diagnosed with dry eyes in 2009. I had burning and pain for 2 years or so, and like you multiple doctors with different diagnoses. Some would say meibomian glands, SLK, others would say low TBUT but good oil production. I even had one doctor in Chapel Hill (dry eye specialist) say that my glands were great but low mucin.

Red eyes and burning is allergy related. Your eyes do not have to itch for it to be an allergy. That's a misconception. I definitely have bad allergies and within the last 2 years started tearing, itching, grittiness, heavy eyelids. However 10 years ago my eyes would burn constantly and any eye drop I put in my eyes made it worse. Don't dismiss eye allergies.

I also think you have some sort of neuralgia. I was eventually diagnosed with that by a doctor at the Mayo clinic. My symptoms were so severe yet my corneas were healthy. The doctor was a corneal specialist and I trusted him. Also I should tell you he didn't really care that my TBUT was low. The fact that my corneas were healthy and yet I had constant pain and burning made him suspect neuralgia.

[TARYN]

Hi Alix, Happy to hear you don't have CCH. I am wondering if your doctor uses amniotic membrane in his surgeries. It has so many healing properties to help with redness, inflammation, dryness, pain etc. It is pretty amazing how it can heal the ocular surface. It is something you can use alone or in conjunction with other surgeries.

[Hokucat]

Alix, if your current scleral doctor is unable to fit your sclerals, you might want to look into EyePrintPro sclerals where they take an impression (mold) of your eye from which they make custom sclerals to fit the exact shape of your eyeballs. Looks like there’s an EPP location in the UK. My good friend has EPP lenses and it works well for her. I think Rebecca also has EPP. Even my PROSE scleral doctor who has tons of experience and expertise says she sends her difficult to fit cases to EPP. Here’s EPP’s website:

https://www.eyeprintpro.com/

[Alix]

Topher3 - the doctor expressed my upper and lower glands and said there was plenty of oil coming out and that they looked like they were functioning normally. I have permanent thick veins which wont go away in both eyes, and on top of that pink haze which turns a darker shade of pink at random times. That there is something wrong with my immune system is a distinct possibility but none of the doctors I have seen have asked about getting tested for this. Do you have any idea what kind of immune disease can cause the kind of symptoms we have? Apart from my eye problems I feel like I am in good health.

woodart - thank you I will have to carry on searching. The last doctor I saw was a complete waste of time, I will not be buying steroid eye drops thats for sure. How many scleral fittings did you have before you got ones that fit?

Chemia - true but what could I be allergic to though? My eyes look and feel the same pretty much all the time, regardless of where I am and what I eat. I did ask about neuralgia but the doctors say it cannot possibly be the case as there was no trigger like a chemical accident or LASIK. Have you now managed to cure your condition and if so how?

TARYN - thank you. No he does not use amniotic membrane as he feels he does not need it to get good results. He has won awards for surgery so I do not doubt his skills. There are other doctors here who use amniotic membrane on its own for its healing properties as you say but I am not ready to go down that route yet, I will try PRP drops first.

Hokucat - I called them a while back and discussed my situation with them over the phone and they think I should try normal sclerals first as they have a lot of experience with this. If they don’t work then we will go for EPP, apparently only a handful of people in the country have had these since they invested in the equipment so its all still quite new but the results are amazing.

[Hokucat]

Sounds like a good plan, Alix. I think EPP may be very new in the UK, but has been around longer at least in the U.S.

Along with a couple drops of Refresh Celluvisc and saline, I also put a few drops of autologous serum tears in my sclerals (okayed by my scleral specialist) so it can nourish my eyes all day, and it seems to help. If you get the PRP drops, perhaps ask your scleral specialist and Vissum if ok to put a few drops in your sclerals.

[TARYN]

Sounds like you have some options that might work out. You have to trust you intuition. Since we live with our eyes sometimes we know better than some doctors. I was really upset about the cosmetic look of my eyes (the redness and veins) so I pushed for the surgery. Dr Tseng didn't think the conjunctiva was that wrinkled but actually while he was doing the surgery, he saw that the conjunctiva was sticking to my inner eyelid and that was the cause of some of my discomfort and inflammation and red veiny appearance. He actually said it was a good thing that I pushed for the surgery because they can not tell everything from a preliminary exam and sometimes find something extra that is causing problems while performing the surgery/

[Chemia]

Alix,

I think you will have a better understanding and appreciation of neuralgia if you read this publication.

https://www.ncbi.nlm.nih.gov/pmc/art...MC5607443/#R48

It is recent and the resources are reputable. You will find that dry eye in itself can cause corneal neuralgia and especially if the inflammation has been going on for a while. Does not mean that everyone who has dry eyes gets neuralgia just that it does happen to the unfortunate few. You can treat the ocular surface but the neuralgia can remain due to malfunctioning nerves and signals.

As far as my cure, sorry there is no cure. I am functional and I have found ways to adapt to my new normal. I do use restasis and artificial tears and still maintain IPL treatments and although my tear film has improved I still have the pain and consistent irritation. And yes I have seasonal allergies which complicates things further.

My doctor has encouraged me to continue wearing my daily disposable contacts to help with the neuralgia and that has worked. In fact it worked for 4 years before my allergies got so bad I couldn't handle contacts. I still plan on going back to contacts eventually. They definitely helped me in the past. I could not tolerate scleral lenses due to debris build up and eyes would get red.

Good luck.

[MGD1701]

Sounds like you have some options that might work out. You have to trust you intuition. Since we live with our eyes sometimes we know better than some doctors. I was really upset about the cosmetic look of my eyes (the redness and veins) so I pushed for the surgery. Dr Tseng didn't think the conjunctiva was that wrinkled but actually while he was doing the surgery, he saw that the conjunctiva was sticking to my inner eyelid and that was the cause of some of my discomfort and inflammation and red veiny appearance. He actually said it was a good thing that I pushed for the surgery because they can not tell everything from a preliminary exam and sometimes find something extra that is causing problems while performing the surgery/

Thanks for sharing TARYN. That is scaring even the best expert like Dr Tseng can not detect CCH from the slit lamp?
So your redness and pain were constant or sometimes no symptoms?
Your CCH must very mild but bad location? I admire your excellent intuition.
You are very lucky to have Dr Tseng who earns a great reputation. Did Dr Tseng mention triggers for the CCH?

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''dry eye in itself can cause corneal neuralgia and especially if the inflammation has been going on for a while.''
This is also my understanding.