Introducing

[maggie123]

Hi from South Africa. Started to wear contacts 40 years ago. After 6 years had very dry eyes and had to stop wearing them. After 5 years wors soft lenses with slight improvement. Had RK in the late 80s and from there my problems started. Vision deteriorated - had become long sighted due to surgeon error. For two years struggled with this and decided to have corneal transplant in London. Epithelium did not heal and I was in a great deal of pain. Another two years whilost vision adjusted and spent days in a dark room with left eye covered and unending pain I then began to form ulcers and erosions and "Pit" marks in the cornea. During all this I was advised that my problems (in both eyes) was poor blood supply and a little eye dryness. My situation become worse and was advised to have left eyelid sewn up!...I began using an ointment in both eyes at night and litres of Thera Tears to wet my eyes. After reading your forum I stopped using the ointment and am using the baggie and lid scrub - a little better, but my eyes sting and burn and I have to rest them a lot. Have great difficulty reading and driving and have no depth perception. I have ordered tranquilleyes and heat inserts and Dwelle eyedrops and am trying to decide what to do about Panoptx as you cannot get them here in SA. However will be in New York in June so will see a dry eye specialist whilst there.

Anything else you can suggest??

[Rebecca Petris]

Maggie, welcome! I'm so sorry to hear what you're going through.

How long will you be in the US? In a very severe situation like this, post transplant and where tarsorrhaphy (lid sewing) is being considered or has been done, Boston Scleral lenses are the first thing that comes to my mind as a long-term solution to get some sight back for you. Your situation is complex so one can't be sure without an evaluation but I know many post RK and post transplant complications cases as well as some people who were able to have the sewing reversed and use sclerals instead. Something to consider, if you're able to travel to Boston while in the US. Feel free to contact me privately about this or visit BFS and contact them.

Regarding Panoptx: Is the problem with getting them in SA that you need a prescription in them, or need to try on the frames, or both? I say that because if you are going to be in Manhattan and planning to try and get Panoptx there, make sure to plan ahead. I have a lot of customers in Manhattan who have NOT been able to find the right kinds of Panoptx frames locally - this is really amazing to me - that no local dealers seem to keep these dry eye friendly models stocked. If I can be of any help let me know. For example what I've done with some people is send them a few different styles to try on, and time the shipment to arrive at their hotel when they arrive, then they pick what fits and send the rest back, and get a local optician to do prescription lenses (or send them to Panoptx for custom lenses there if needed).

In the meantime, you could take a pair of wraparound sunglasses and modify them with some kind of foam lining (eg weatherstripping) or something perhaps? Or use some other kind of eyewear, swim goggles, foam-lined goggles...?

[maggie123]

Help at last

Hi Rebecca
For the first time I feel as though I am not alone!! Thanku for your prompt reply.

I consulted with a corneal surgeon in Manhattan two years ago. He was more concerned with the ulcer that was sitting on my cornea than anything else. On subsequent visits he made little mention of anything else other than I had made progress with the ulceration and erosions by using copious amounts of ointment.

My eyelid was not sewn up because I refused and carried on with closing my eye up completely and using the gloop.

I will be in NY from the 24 June for about a week. I can stay longer if necessary. My thing with Panoptx is the fit. I ordered as pair of Churados that a friend in NY kindly brought to me. They were too big and the foam inserts kept falling out. Even though not perfect I wore them all the time. Because of the foam insert falling I ultimately lost this and did not know what to order. From the site, I decided that maybe Solano would fit as their sizing showed s/m. As u know, no stock! I like the polarised frames as they give me a little visual edge when driving. I would if possible like to have a pair where the foam cup does not come out so that I cant lose it and I need another day night pair that I can wear when I am in lighter environments. Sunlight (plenty of it in SA) is so painful I have to have the best (darkest) PROTECTION) so copper or grey is OK. What do you think of the Zephyr for women from Ptx? So, to sum up, finally, I need two pairs - day/night (do not have to be polarised). A further polarized pair for bright sun preferrably with fixed cup copper or gray/ I would say my face is small. I tried to get a prescription for them but mine is too strong and I have that other thing - er - steep sides!! Oh, my eyes do not close at night either - so my eagle eyed partner tells me.

When my eyes were at their worst - I didn't mention that after my l. eye had healed after transplant, I had a cataract operation. The next day I was in the doctors surgery at 7.00 a.m. in the most indescribable pain. My eye looked like a piece of raw steak - I had formed an ulcer overnight. For approx. a year I struggled trying to heal my eye - during this time a South African doctor endeavoured to fit me with Boston sclerals - when I could open my eye the vision was stunning but the lens irritated the pit marks and slight erosions making the lens too painful to wear so we gave up. That was 3/4 years ago and I am told that the cornea is now healthier. I am wondering whether I should try again? What do you think? I am considering visiting another MHattan opthalmologist - the one who wrote that book, I am sure you will know who he is.

I have ordered another pair of tranquilleyes. I had a pair sent to me approx. 3 years ago direct and I found that the sides of the goggles dug in a bit so did not get very far as I found them uncomfortable. I am prepared to try them again as they now have the heated inserts etc. I will try anything.

Sorry this is such a long of tale of woe and you have probably keeled over from exhaustion reading all this - promise this will be the last time. I was also interested in the "bubbles" you put over and throw away. Could you tell me where I can get them from - your shop? and also the tape? I was in Switzerland last week and the extreme cold was indescribable so I bought some 3m tape but it was obviously not the right kind - getting it off was having a baby all over again. Can I get the pink stuff from you?

If you have managed to read all this - thank you, I am grateful. Look forward to hearing from you.

[Rebecca Petris]

Regarding Panoptx...

I think I had a pair once where the eyecup tended to slide out; I don't recall which model. Different models have different 'snap' mechanisms. Sounds like the Solano would indeed be a good choice. You can still get this in jade (mind, it's not like what it sounds and not like the pics! it's sort of a dark olive) - at least last I checked they had some pairs left. Also there are the fixed-eyecup ones Viento and Cyclone. These have the foam built right onto the goggle, so the eyecup isn't an issue, except that if it gets worn you need to send it back to Panoptx to get 're-foamed'.

Regarding lenses: With Panoptx, the darkest lenses are actually the cheapest ones - used to be called Baseline, then was called Sharptec, now they've renamed it Sharpview I think. The polarized Panoptx lenses are not as dark though of course the optical quality is great. I was working with a lady in NY on this last week with similar needs and she ended up with the low-end lens for bright sun and the day/night lens for indoor and I think that is a sensible/popular combo.

Zephyr is an SPF 75 model so it does NOT have the form fitting foam which will give you maximum moisture retention and light occlusion. I'd definitely stick with the SPF 100 models if at all possible. On a small face the Viento or Cyclone is probably the best fit.

I tried to get a prescription for them but mine is too strong

Another possibility then is the new moisture chamber product coming out (more about this in the weekly bulletins).

For approx. a year I struggled trying to heal my eye - during this time a South African doctor endeavoured to fit me with Boston sclerals - when I could open my eye the vision was stunning but the lens irritated the pit marks and slight erosions making the lens too painful to wear so we gave up. That was 3/4 years ago and I am told that the cornea is now healthier. I am wondering whether I should try again? What do you think? I am considering visiting another MHattan opthalmologist - the one who wrote that book, I am sure you will know who he is.

Dr. Latkany is excellent and I think seeing him would be a great idea.

Regarding sclerals, there are several types of these and most are ordered from a manufacturer after they try some trial lenses on you. The Boston lenses can only be obtained in Boston as they are custom lathed on site to fit your eyes. All types of sclerals have had some success with various types of patients but the Boston ones are different enough from others that based on past experiences with others I do think it's worth trying them even if you haven't been successful with earlier ones. These technologies are always evolving, too, and the lenses made just 3 years ago can be a world away from the ones made today.

I have ordered another pair of tranquilleyes. I had a pair sent to me approx. 3 years ago direct and I found that the sides of the goggles dug in a bit so did not get very far as I found them uncomfortable.

Sometimes it takes a bit of playing around with them to get them to fit just so. Worth a try definitely.

promise this will be the last time.

Keep it coming, this is what we're here for!!!

I was also interested in the "bubbles" you put over and throw away. Could you tell me where I can get them from - your shop? and also the tape?

Do you mean the Medtronic bubble eye bandages? Check out this link - look at both the "Nite Eye" products. Wish we could stock them but they won't sell to us.

I bought some 3m tape but it was obviously not the right kind - getting it off was having a baby all over again. Can I get the pink stuff from you?

I had good luck with the 3M Micropore - at least it did not leave any residue and was reasonably comfortable. I spoke with a user the other day who is happier with the 3M Transpore. He also shared a tip - pressing the tape against your clothing several times to take the edge off the 'stickiness'. Another very sensible thing that I just never thought of. Of all tapes I've tried I like the pink one best and yes we have it in the shop. I seem to be perpetually behindhand these days but I'm going to give Transpore another whirl soon.