Docs won't let me cauterize the bottom two

[Danny_]

Well, I had two punctal plugs removed today because I went to another optician and she told me I was at risk of getting a bacterial infection because of the over-tearing with four plugs in. So, my eyes are back to feeling dry as hell.

My plan had been to cauterize the bottom two because it's supposed to be more effective (at least slightly) than plugs and I had hoped that this would give me the balance I needed but the docs refused to do this. Despite, my having done trials before with only two plugs in for months and it not being enough, they are making me do the same now. I wouldn't mind except that they seem intent not to let me cauterize them EVER. I asked if we could do the trial with the two plugs in for a few weeks and then cauterize them and they said that no because cauterization was only something done for people with damage to my eye.

Unfortunately, I think my insurance forces me to continue to use these docs unless I want to pay for everything myself (which I don't) so I am not sure what to do. Very annoyed right now and I'm back to putting systane in every 20 mins. Sigh...

The other thing is that she wasn't able to get the upper plug on the right out because it is very big and jammed really tightly in. I had problems with that side because the plug kept falling out. So now, I have the upper right and bottom left plugged. I suppose it will be an interesting experiment.

[Rebecca Petris]

Yikes. Sounds like time for a new doctor. Seems like over a little time it might be cheaper than using Systane every 20 minutes.

One option that other users here have benefitted from is regular plugs in two puncta and flow controllers in the other two, to reduce overflow. But, that would mean getting that upper plug out.

[Danny_]

Thanks for the informatioin. I did a search on the flow control plugs and am excited to see if they will work for me. I stopped using Systane because I saw it was recalled (besides, it wasn't giving me much relief). I'm back to the genteel gel which I've always found the most effective but I still have to put it on every forty mins or so.

[Julie1]

I would strongly consider the flow controller plugs.

These plugs have helped me. I had quite a bit of overflow with full upper plugs (blotting every ten minutes or so) and have found that the flow controller plugs have helped. It's not perfect, but it's a lot better than only having lower plugs. I don't think anything will replace having a normal tearflow. I was in a similar situation, putting in drops every fifteen to twenty minutes.

The other thing is that she wasn't able to get the upper plug on the right out because it is very big and jammed really tightly in. I had problems with that side because the plug kept falling out.

You might consider leaving the upper plug in and replacing the lower plug with a flow controller plug. That way, you would not have to risk tearing the upper punctum.

Also, you really might want to find another doctor to get another opinion as to whether there is a increased risk of infection from having both puncta plugged. There are quite a few members here that have all four ducts plugged. I agree with Rebecca that using Systane (or even Genteal gel) every 20 minutes or 40 minutes is more expensive long-term than getting another professional opinion. There may even be a long-term risk to your corneas to only have lower plugs... I am a case in point.

-Julie

[Danny_]

I would strongly consider the flow controller plugs.

These plugs have helped me. I had quite a bit of overflow with full upper plugs (blotting every ten minutes or so) and have found that the flow controller plugs have helped. It's not perfect, but it's a lot better than only having lower plugs. I don't think anything will replace having a normal tearflow. I was in a similar situation, putting in drops every fifteen to twenty minutes.



You might consider leaving the upper plug in and replacing the lower plug with a flow controller plug. That way, you would not have to risk tearing the upper punctum.

Also, you really might want to find another doctor to get another opinion as to whether there is a increased risk of infection from having both puncta plugged. There are quite a few members here that have all four ducts plugged. I agree with Rebecca that using Systane (or even Genteal gel) every 20 minutes or 40 minutes is more expensive long-term than getting another professional opinion. There may even be a long-term risk to your corneas to only have lower plugs... I am a case in point.

-Julie

Thanks for the info Julie. You said that the flow control wasn't perfect. Does that mean that the tears still stream down your face, even with them in?

As for getting another doc, I am working on it! Trying to get them to refer me out so that my insurance will cover it but they are giving me the run around at the moment. Honestly, it wouldn't bother me so much if they weren't so darn arrogant, especially when the "head doc" isn't even a cornea or dry eye specialist.

[Julie1]

Hi Danny,

I'm glad you are working on getting another doctor! It's important to find someone who will work will you and help you try lots of different options to manage this tricky disease.

Although the flow controller plugs have been very helpful, I still find that my eyes are very wet with some pooling and sloshiness and need for blotting (when I am outside on a nice day) and dry (when I am at my office or during the winter). My eyes still burn from time to time, and sometimes I feel like I have soap in my eyes and other times it feels like battery acid. The composition of my tears must be of poor quality since I have plenty of tears with lower plugs and upper flow controller plugs. I don't have tears streaming down my face with the flow controller plugs, and it does not sound like you would either. I guess what I am trying to say is that the plugs have been helpful, but nothing will ever take the place of having a normal tearflow. I just want to give you realistic expectations.

I hope that helps!

-Julie

[Danny_]

Hi Danny,

I'm glad you are working on getting another doctor! It's important to find someone who will work will you and help you try lots of different options to manage this tricky disease.

Although the flow controller plugs have been very helpful, I still find that my eyes are very wet with some pooling and sloshiness and need for blotting (when I am outside on a nice day) and dry (when I am at my office or during the winter). My eyes still burn from time to time, and sometimes I feel like I have soap in my eyes and other times it feels like battery acid. The composition of my tears must be of poor quality since I have plenty of tears with lower plugs and upper flow controller plugs. I don't have tears streaming down my face with the flow controller plugs, and it does not sound like you would either. I guess what I am trying to say is that the plugs have been helpful, but nothing will ever take the place of having a normal tearflow. I just want to give you realistic expectations.

I hope that helps!

-Julie

Yeah, it does help. Thank you very much Julie for sharing. I think that I am definitely going to try these. This thing has gone on for far too long and I can't get back the time that I have lost but maybe, I can sort it out now once and for all. I could definitely live with the tears just being sloshy as long as they stay in my eye. I don't see why that would cause any future problems with bacterial infections etc. and it would be nice to be able to go outside without it looking like I'm crying the whole time.

[laine]

my doctor doesn't recommend plugs or cautery

Hi,
I have super dry eyes and some inflammed oil glands in my lids. My doctor told me that the general consensus now for this condition is to NOT cauterize or use plugs as it can create a toxic soup for the eyes. Apparantly tears can sit in around the eyes for too long and can cause bacteria to grow. Just passing on what he told me. I don't have enough tears anyway to warrant having either done to my eyes anyway. Good luck, Elaine

[Jade9923]

Again, I'm so dishearted to read these types of threads where doctors are so obviously misinformed about the disease they are treating. Toxic soup?? Translation: I don't have the time or the interest to deal with putting plugs in your eyes. This is criminal in my opinion!!! If there is a possibility of getting relief from dry eyes, I for one would walk on cracked glass to get a chance at some relief.

My goodness, if it were not for the plugs in all my punctums I wouldn't be able to function in life. What is this continual resistance by doctors saying it is somehow dangerous to plug all the ducts. Rediculous! You could be getting total relief here but instead are dealing with doctors who don't have a clue about the disease or more importantly, don't CARE ENOUGH about your problem to have to deal with putting in plugs. Plugs are a tedious, time consuming thing for doctors. We have to keep remembering where these sort of doctors are coming from other than their obvious lack of caring. No doctor is going to get rich on dealing with dry eyes and plugs!!! If I were you, I would find another doctor first of all. Secondly, I would tell the doctor that you are willing to go wayyyyyyyy out on a limb and get the 4 plugs anyway. Tell them you are willng to live on the edge in order to get potential relief from your DE.

For heaven's sake, when will this madness end????????????? You folks aren't getting the treatment or the RELIEF you need because of this doctors who don't give a hoot. So so sad.

Hi,
I have super dry eyes and some inflammed oil glands in my lids. My doctor told me that the general consensus now for this condition is to NOT cauterize or use plugs as it can create a toxic soup for the eyes. Apparantly tears can sit in around the eyes for too long and can cause bacteria to grow. Just passing on what he told me. I don't have enough tears anyway to warrant having either done to my eyes anyway. Good luck, Elaine

[Rebecca Petris]

The real issue here as I see it is the individuality of our conditions and the need for patient exploration and experimentation rather than buying into any one treatment modality based on common beliefs.

I do not believe the "toxic soup" theory is the consensus - at least not yet - although it's becoming more popular in the last couple of years. Further, I do not believe the "toxic soup" theory is either all right or all wrong. I've known several people who were clearly worse off when quadraplugged (constant burning not present when only lower plugged or not plugged) but I've known even more who fared excellently with all four either plugged or cauterized.

We always have to stay vigilent for what amounts to medical fads. There are plenty of doctors who sincerely believe the toxic soup business and there are also plenty of others who are suspicious of the concurrence of this toxic soup theory with the proliferation of Restasis Rxing (i.e. "use Restasis not occlusion"). I suppose in ten years we'll look back on this with more insight.

For heaven's sake, when will this madness end????????????? You folks aren't getting the treatment or the RELIEF you need because of this doctors who don't give a hoot.

No one knows whether they would get relief with the plugs. But I agree that they should have the opportunity to try, if other treatments have failed. One can always move on to another doctor who is willing to try more things. And most of us do, judging from the poll about how many eye doctors dry eye patients see.

Sometimes the problem is the doctors really don't care or can't/won't spend the time. Sometimes there's a bona fide difference of opinion about what constitutes appropriate treatment. In person, it's usually not too hard to tell the difference, but second hand it's hard to judge fairly.

[indrep]

Recently Allergan, manufacturer of Restasis, has begun running full page ads for Optive, an OTC artificial tear. Funny thing, the ads for Optive are all about the osmolarity of the tear film starting Dry Eye Syndrome, Ocular Surface Disease, etc. No where in the ads is inflammation mentioned.

With all the discretion I can muster I am now asking the Restasis crowd which one is it? Inflammation or Osmoloarity? Since the same company is touting both, surely their rep came by and gave them the answer.

I'm sorry to go on about this but I am sick of pharma companies making promises to consumers in direct advertising. There should be " do no damage first" in the pharma business as well as the doc side. Mental "teasing" of the public with ads is damaging in my book.

[neil0502]

Jade-

I feel your pain.

I actually think the problem is far, far, far larger than the doctors, some of whom, by definition are worse than average.

First, they (BigPharma) really aren't spending a great deal of money in trying to test remedies that will not generate a great deal of money (via product sales), so we aren't really likely to get large scale clinical trials of, say, asparagus as a dietary supplement that helps to relieve dry eye symptoms.

Second, (Shells?? You out there?) statistics. Statistics make all of this really, really tough.

Statistics tell us that you can be awfully sure that a given treatment will probably work on 300 million Americans by testing 4,000 of them in a given clinical trial. Gathering that may people--especially that many WITH, say, DES, is tough.

But let's say you do. Now--to Rebecca's point--you and I know better. We're way more complex than that, statistics, probability, confidence intervals, and sample sizes notwithstanding.

So ... that lends itself to today's test results directly contradicting yesterday's test results (wait a minute. I thought punctal plugs were GOOD for us.....) AND to things that WORKED in trials NOT working for us.

So ... you COULD start requiring that clinical trials include 10,000 people ... 100,000 people ... but ... you really can't practically do this, so ... we're stuck with what we're stuck with: probability and statistics.

I also don't think that our studies spend a great deal of time trying to identify subgroups. For those in whom a product DID show promise, and for those in whom a product DIDN'T show promise (and for those in whom there were bad side effects) ... what was different?? Were they slightly diabetic? Did they have big noses? Was it MGD vs. aqueous-deficient dry eye? Did they have elevated white cell counts?

What??

With that information, you could more narrowly target treatments to those most likely to benefit AND least likely to suffer bad side effects.

Although ... that would hurt sales, now wouldn't it. Hmm.

It's a big, structural issue that isn't likely to improve any time quickly. Nor can I think of a way TO fix it that has much chance of gaining public acceptance.

Hang in there.....

[Rebecca Petris]

I also don't think that our studies spend a great deal of time trying to identify subgroups. For those in whom a product DID show promise, and for those in whom a product DIDN'T show promise (and for those in whom there were bad side effects) ... what was different?? Were they slightly diabetic? Did they have big noses? Was it MGD vs. aqueous-deficient dry eye? Did they have elevated white cell counts?

Ha! You might as well expect a Lamborghini competitor from a company that can't keep a tricycle running. This kind of study is my dream. But who will fund it?

The pattern with dry eye drug approval attempts (though come to think of it this is not by any means unique to dry eye) is all about repeated failure to establish improvement in signs and symptoms, followed by repeated attempts to slice and dice the existing dataset into a small enough group AFTER the fact to obtain approval. - And after the drug is approved, who cares how the original group for whom it was effective were defined: We have a drug! Whoopie! Let's prescribe it to everyone and his uncle. Because frankly, that's what everyone and his uncle (except us maybe) wants.

So in some sense, drugs ARE getting approved on the basis of the big noses and white cell counts, but no one cares. I don't blame just the pharmas for this phenomenon. It's the doctors and the consumers too. We've gotten ourselves in a fine pickle.

[neil0502]

Ha! You might as well expect a Lamborghini competitor from a company that can't keep a tricycle running. This kind of study is my dream. But who will fund it?

I was kinda' hoping that you would

Nah. That is what I'm saying. Things don't get funded in our world, normally, unless they have big ROI (Return on Investment).

The notion of slicing and dicing datasets to determine subgroups for efficacy and for side effects tends to radically diminish the ROI of a drug, not increase it. That's a natural barrier to pursuing that path ... as long as profit is the primary motive for the venture.

As I often say: like it or hate it, this is part and parcel of free-market capitalism. It ain't changing any time soon.

Neil
who is, in an hour or so, on his way to yet another eye doctor ... with FIVE pairs of eyeglasses in hand ... to try to work on the Rx to wear over the sclerals. May be looking at a single pair of wavefront glasses, incidentally. Neat concept (though they can't be made in wraparound frames, so their utility, for me, would be quite limited (eg, DEZ posting!))

[calli66]

Neil-
Just curious---will the doctor do the wavefront measurement with your sclerals ON or off?

Take care and best of luck getting a good Rx.

C66