Corneal Scarring and eyelid surgery

[shanku]

For the last three-four months, I am suffering from Recurrent Corneal erosion/pitting/abrasions and scarring. The most recent corneal scarring adjacent to the pupil started three weeks back in my left eye and it is 10 to 15% deep from the epithelium level. My left eye was very red with blurry vision, constant tearing and it was very hard for me to keep my left eye open(keeping it still patched with ointment to ease the pain). The doc is saying there is inflammation around the scarring that is not healing. There was no trauma for this scarring that I am aware of. The doctor thinks that the scarring is a result of my severe dry eyes, lagophthalmos, incomplete blinking and corneal exposure keratitis. My local doctors are suggesting immediate eyelid surgery as the next step. Here are some options I am contemplating to heal from this scarring and also to prevent future occurrences:

a) Muro 128 ointment to heal the scarring.(have already tried Erithromycin ointment and Vigamox drops). But my Doc does not agree.

b) Bandage contact lens- to heal from scarring and prevent recurrence.(Suggested by Dr.L, but no local doctors are ready to try it )

c) PROSE Scleral lenses from BFS(covered by my Insurance and approved for it ) - to prevent recurrence and help me go on with my job and usual activities. None of the doctors i visited favored this idea.

d) Eye lid surgery -Tarsorraphy or Gold Eyelid implant.

e) Dr.L also suggested relocation back to CA (or anywhere else where I lived earlier without these issues) to handle the allergy problems. My allergy tests turned out positive on quite a bit of allergens. But this is long term.

I have had two IPLs and one Lipiflow during the last two months. Dr.L suggested surgery if BCL fails. IPL doctor initially said MGD is my top problem but now suggested eyelid surgery instead of doing any more IPL.

Please share your experiences to heal from this kind of problem.

Should I exhaust BCL as well as Scleral lenses before going for the surgery (given that I have a current unhealed scarring), but my local doctors are not supportive of this.

On Scleral lenses: since I am approved for this already, is it possible to try these without any local ophthalmologist support on ongoing issues with it? What kind of issues can crop up while initially trying it?

Thanks and appreciate your help.

[Ahmed]

Gosh,

I think eye care in the states must be very different, the options you speak of, such as a Tarsorraphy seem so drastic for just a 3/12 history of RCE. To consider some of those options, without an eye care professional making the decisions? I do not think that is wise at all.

regards,

Ahmed.

[shanku]

Thanks Ahmed!

I am sorry to say that medical care in US is very fragmented and docs have a take-it-or-leave it approach. I mean, they hardly work as a co-ordinated team in patient's best interest with a plan and rather many a times suggest solutions in their (as per the expertise) or clinic's best interest. Often they do refuse to accept other peer doc's opinion and dislike that patient is taking other opinions. Patients are left to themselves to pick and choose these treatments. Most of them hardly spend more than 5-10 minutes with patients in spite of visiting them multiple times and each visit involves waiting for months. They do not have time to explain benefits/risks of each alternatives or educate the patients about those. Moreover, patients can practically only pursue the treatments available in his/her local area; the 2nd opinions from remote experts can not pursued if the local docs do not agree with their opinions. Also, these different treatments can only be pursued at different facilities as all options are not available under one roof. In that case, they do not usually direct patients to other facilities for exhausting those treatment options.

[littlemermaid]

I am sorry to say that medical care in US is very fragmented and docs have a take-it-or-leave it approach. I mean, they hardly work as a co-ordinated team in patient's best interest with a plan and rather many a times suggest solutions in their (as per the expertise) or clinic's best interest. Often they do refuse to accept other peer doc's opinion and dislike that patient is taking other opinions. Patients are left to themselves to pick and choose these treatments. Most of them hardly spend more than 5-10 minutes with patients in spite of visiting them multiple times and each visit involves waiting for months. They do not have time to explain benefits/risks of each alternatives or educate the patients about those. Moreover, patients can practically only pursue the treatments available in his/her local area; the 2nd opinions from remote experts can not pursued if the local docs do not agree with their opinions. Also, these different treatments can only be pursued at different facilities as all options are not available under one roof. In that case, they do not usually direct patients to other facilities for exhausting those treatment options.

Ahmed, for US read UK - where are these dry eye specialist docs of which you speak, and how do you think we may access them? Regards

Shanku, I dearly hope you find some wise help with these difficult choices.

[PotatoCakes]

agreed that surgery and some of these other options you mention seem Very drastic. I don't know what the situation is in NC but there have to be some doctors even a state away that can offer some better options. There are a lot of physicians in the US that do not practice in the way that you describe; I'm sorry that you're experience has been so awful. Maybe someone here can recommend some alternative practitioners for you to try? Even my last doctor, who I have issues with, was more put together than the experience you describe.

Have any of the doctors you've spoken to mentioned serum drops? They aren't covered by insurance (you have to pay out of pocket) but they can do wonders to heal corneal damage and seems worth a try before you consider more extreme options. Here is a good thread on serum drops if you are unfamiliar with them: http://www.dryeyezone.com/talk/showt...ht=serum+drops
There are other threads too if you do a search but I like the one above because it's a good starting point.

A quick Google and I was able to find a pharmacy in NC that makes serum drops: http://www.thecompoundingrx.com/
You might ask your doctor(s) about them. If your doctor hasn't heard of them, there is a ton of research online and in medical journals; you could suggest Google or even print out some information for him/her to read. If he/she isn't willing to learn about serum drops, find someone who is willing. Serum drops may not be the end all be all for you but I do know that a doctor who isn't willing to learn about something that may help his patient, isn't a doctor worth going to. Obviously there are doctors in NC who are using serum drops if there's a pharmacy there making them so it's just a matter of finding one of those doctors.

[shanku]

Well, I regularly visit some senior Cornea Disease doctors in University of North Carolina Kittner Eye Center as well as Duke University Eye Center...these days they dislike seeing my face again & again ; these are the top tier local eye care facilities that people here are aware of. Yes there may be better doctors in neighboring states but it is not practical to get regular care from them....for me these days on average I make at least 1 trip every week to some docs related to my eye care and therefore can not do that unless the doc is local. Even in my local area, unless the ophthalmologist you are seeing connect you to other resources available in your area, it is hard to locate which ophthalmologists in the town offer what solutions to my current problem (unless you make visits to them, calling their front desk is not helpful).

I appreciate making me aware of serum drops usefulness in my scenario; This week I again go back to cornea docs as well as oculoplastic doc in both the above centers. I shall beg/prey/preach these items provided they heed to me:

a) Muro 128 ointment
b) Serum drops
c) Bandage contact lens
d) Boston Sclerals

Let me know if there is anything else to add to this list. Thanks again for all your help.

[NeedMyEyes]

is this floppy eyelid syndrome?

For a second, I thought you might have FES??

If so, I have read the treatment is: bland ointments at night, taping the eyes shut, Fox shields over the eyes at night to protect the cornea and conjunctiva from touching you pillow (and preventing further injury and allowing it to heal).

[shanku]

I mentioned couple of doctors about this (floppy eyelid syndrome) but no one cares to evert the eyelids to check for it. BTW, where do you buy these eye shields? I can not locate these in my local pharmacies? how to use these? Can you use these along with Tranquil Eye Goggle? Can you please post me the link to the product you ordered? Please respond on this.

Other updates from my end:

a) no clinic will try Bandage contact lens on me; they think scar has healed and I do not need it...then why do I get the pain if I keep it open? I believe they do not have any answer. one clinic gave me Ciloxan ointment and other gave me Freshkote eye drops to use; unfortunately, none helped; keeping the eye patched with ointment to avoid pain/redness....it is now almost patched for a month and I am pretty sure it is not going to heal this way

b) tried to plead with these clinics to try something else; One agreed to do serum drops after lot of pursuing...will see how that goes; and the other clinic the doctor just suggests surgery - but as I understand surgery is for long term health of the eyes; not sure how that will heal the scarring in the short term; I think scarring has to heal before the surgery; but the 2nd doc can not be easily reached unless I have another trauma

c) Have decided to try Boston Sclerals before surgery; if it suits it may also help with healing of the scarred left cornea...may be I am being too hopeful about it. Have my appt. with them at end of this month.

Thanks and appreciate all your help & support.

[shanku]

One of the doctor here provided me the serum drops earlier this week; I got dramatic improvement with my symptoms just after using it couple of days; Am able to keep left eye open again and use both eyes again, it feels wonderful ... have been missing my left eye badly for last 1 month. Thanks to "PotatoCakes" for the information.

I have a question: They gave me 2-3 week's of supply as it was the first time. Do I need to continue using it indefinitely from now on to keep away from further corneal abrasions/scarring and help relieve my symptoms?

This board is wonderful! Thanks & appreciate again for all your help.