Results of first corneal specialist visit...HELP!

[neve]

I saw my first specialist yesterday and as I have nothing to compare him with, I was interested in what someone more experienced than I had to say. He seemed to do an exam that was complete as well as spending time with me, answering questions and never rushed out or acted impatient. I was told that in my right eye my tear production is a 2 and my left is a 6 or 7, can't recall due to nerves. As soon as I heard "2", I panicked. Also said that there are scratches on my cornea (the worse eye) and dry spots on both eyes. Meibomian glands are not fully functional due to blockage in some spots but did not say that I had bleph, tho tear film is inadequate.

My treatment recommendations - Systane Balance Restorative formula( because it supposedly helps with lipid layer) at least 6 times a day. Stop Alrex (which optometrist put me on). Warm compresses and lid cleaning with baby shampoo; says he does not like the prepared formulas for lid cleaning. I am to use Muro in worse eye at night(but not in better eye) but to use Systane Balance for day. I asked if I am at risk for RCE's and he said yes as there is evidence of scratches in worse eye with such a low tear production in that eye. Have not done Muro yet...kind of not looking forward to the burn as my eyes are so raw and sensitive to so much.

The rest is fish oil caps and stop smoking ( I know, I know!). I am scheduled to go back in a month for plugs. He mentioned Restasis tho he did say that without insurance it is very expensive, may take 6 months to work if at all and he states that his experience with it has shown it to work better on dry eye caused by autoimmune cases i.e. Sjogrens, tho not always the case.

He says plugs are more cost effective for someone without insurance and work quicker (if they work, as I have learned from this forum). When I asked the front desk staff the price of plugs, I was told $467 which I thought was high. Then, after doing some research, came to the realization that they were probably talking about ONE plug, not two. Pretty upset that I will be paying close to $1,000 for an experiment, all out of pocket. I am hoping that they work and that they don't fall out. If they do fall out, do you have to keep paying for replacements or does it have to do with the amount of time that they have been in? Did not ask my Dr. any of this because I did not know anything about plugs specifically...I guess I thought they just put plugs in and it was done. Now I see it has to do with size, type, brand etc.

I would really appreciate any input regarding my treatment regiment as well as any suggestions/opinions on the plugs. I have no idea what type/brand they use. My Dr. did say to me that he does not like the temporaries and prefers the permanents. If the permanents are not working, he said he can remove them. I am in the dark. As you all know, when there are few treatment options and so much is trial and error, it is easy to panic, especially when everything is so costly and there is no insurance.

Thank you in advance for any enlightenment!

Neve

[NeedMyEyes]

Dr. Latkany is in manhattan. Is that where you are ? Sorry I should have mentioned this before you saw this doctor.

I have permanent plugs and I recommend them. I was actually allergic to the termporaries and they didn't work very well anyway. I would say skip the temps and go to the permanents.

If you have blocked MG glands, most say you have posterior blepharitis.

One other thing - a LOT of people will tell you not to use punctal plugs with Meibomian gland dysfunction. I dont' know what I think yet, but the plugs really helped me with my dryness. One day I plan to take them out. I have also heard that you need to calm down the eyelid inflammation before you get plugs but maybe only in serious inflammation. Really I don't think anybody understands this issue.

[neve]

Hi NeedMyEyes - Thanks so much for your reply. I knew about Dr Latkany and he was my first phone call. His office visit is too high for me right now without insurance. I have a feeling that I will probably end up seeing him at some point in the future but now it is not a possibility for me. As far as the bleph goes, unless this Doc saw something under the microscope, I have no swelling or inflammation/redness/lash involvement that I can see. From what I thought, MGD goes along with bleph and he is having me to do compresses and lid cleaning so maybe I am at a stage that bleph is just not showing, tho it is there. Honestly, I am clueless. This entire thing is very hard to figure out or understand. Whenever I think I start to "get it", it just gets more confusing.

What doe MGD have to do with plugs? Specifically, what is the risk factor? Sorry for all these questions...really trying to understand this awful disorder. By the way, do you have bottom plugs? Nice to hear someone say it helps them!

Thanks for your help!

Neve

[PotatoCakes]

plugs - If they fall out within a certain time period, the company that makes them will replace them free (you'll still have to pay for the dr). I didn't realize that and my physician chastised me for waiting until my next appt to tell him because of it. I don't remember what the time period is but it's something like 72 hours. If you do opt for plugs, ask your doctor so that if one / more fall out, you know the time frame.

I just had dissolving plugs put in all 4 today after seeing a new physician. My main specialist (who I'm getting rid of for a variety of reasons, mostly his arrogance), said that my lower ducts were scarred closed but apparently not because the guy I saw today, had no problem putting plugs in. Hoping that with all 4, instead of just 2, I have some relief.

[neve]

Wow - 72 hours. Unbelieveable. Gee, hope mine don't fall out in 84 hours...! Can't help but feel that the high price of most things medical connected to this disorder, coupled with the fact that there is no standard tried and true treatment (s) for all sufferers, not to mention the entire hit or miss feeling regarding treatments. And not to forget how lucky one feels should they hit on a knowledgable and caring physician after trying many. Add "chronic" to the mix and it's your basic nightmare.

I am just getting started, tho I have had a year or so of all of this in the past with no help and an opth that "dismissed" my concerns. Now that it's back, I am trying to educate myself and find the doc and treatments that will allow me to lead a relatively comfortable existence without my eyes dominating my every waking hour. I am scared and I am hurting and I am trying to make myself believe that there is help out there, but very hard with no insurance.

Thanks PotatoCakes, and I hope your additional plugs do help you to find relief.

Neve

[Hopeful2]

Hi neve,
Sorry to hear all that you are going through with getting a diagnosis. Many of us are in a similar boat. . . It's hard to know what to believe and who to believe. I figure as long as i'm not being asked to do something that could cause harm, I'm okay with going along with the recommendations.

If you haven't already done so, please read Rebecca's post 'coping series 101' on the Dry Eye Zone. There is a lot of good information there. I refer back to this post time and time again.

Also don't be afraid to post lots of questions on the Open Forum. I have learned that there are a lot of people here with a wealth of experience, not to mention some really big hearts which are bursting with compassion!

Take care,
Bella

[PotatoCakes]

Thanks. And I feel you on the frustration. I've been dealing with this for 10+ years now and finally know how to find a doctor that knows (mostly) what he/she is doing. I wish I'd found this site years ago; even though it wouldn't have solved my problem, I wouldn't have wasted so much time searching for answers and I'm just now dealing with the emotional part since I feel fairly recently diagnosed with something beyond the average, everyman kind of dryness.

Any medical problem that is somewhat new or not common enough to be a major focus of research (like sleeping pills or common allergy medicine) ends up being expensive. It's also not like cancer, where it's commonly accepted by insurance companies or masses of people have had their lives so affected by it that they are willing to donate millions to research (like cancer). It sucks.

[PotatoCakes]

---duplicate post

[neve]

I am determined to keep trying and to do whatever I can to try to not allow this nightmare to take over my life. The only thing I did when I got my first outbreak of this 5 or 6 years ago (that did not involve listening to the doc that said "your eyes don't look so bad..." and disregarding my pain), was I went for several sessions of acupuncture. After about my 4th session, my dry eye faded within a week completely.No more symptoms, no more artificial tears. None. Coincidence? I don't know. But this particular acupuncturist (who was my primary care physician at the time) had also cured me of massive, unrelenting headaches that traditional forms of treatment proved useless for months. Coincidence? I can't swear to it but I think the acupuncture was the answer in this case. As far as the dry eye? As I said, I cannot swear to it...I just don't know for sure.

My next step is acupuncture again, which I want to do prior to plugs. Unfortunately, I will have to find someone else this time and that can make a huge difference in success of treatment. The way I look at it, everything is trial and error and feel I need to give this another shot before I spend $1,000 on plugs, also with unknown results. I am hopeful but I realize nothing is certain. I guess all anyone can do is try and hope for the best.

[PotatoCakes]

I'm getting acupuncture now. So far, it hasn't helped my dry eye (although after the last session, I had 2 really good days) but it really helps relieve stress for me and I know that has to make my dry eye worse so it's worth it. I can't remember how many sessions I've had (5?) but I have a post going that I update every time I have a session and keeps track of my progress, etc. It's in the main forum section http://www.dryeyezone.com/talk/showt...24-Acupuncture . If we all keep some sort of record going when we try new things, I believe it can make a difference. When / if you go back to acupuncture, please post your experience; anything I can learn and / or pass along to my acupuncturist, I'm interested in and I know others are too.

[neve]

I am so happy to hear that you are trying acupuncture and it is wonderful that you had two really good days!! I have also found that acu helps tremendously with stress; on more than two of my acu sessions I fell asleep on the table. Stress is toxic and I do feel that it plays a large part in so many medical issues. I am definitely going to read your posts about your acu sessions and I am more than happy to document my own sessions once I begin again which should hopefully be no later than next week. Would I post in the open forum? My main goal right now is finding the right person to start with.

I, too, am always very interested in reading of other's treatment experiences and I feel we can all learn so much. This forum is a blessing for me, especially as I have a very limited support system. The alone feeling can be so devastating.

Thank you!....Neve

[Margaret]

I've tried various plugs over the past year and they all cost about $300 for two...I think the quote you were given was hopefully for all four? I would be surprised if it was actually for one?! The procedure is so simple! Who knows, you are in a more expensive area, maybe that's the going rate. if so, I'm sorry you have to deal with that expense for a trial run at that.

[littlemermaid]

One other thing - a LOT of people will tell you not to use punctal plugs with Meibomian gland dysfunction. I dont' know what I think yet, but the plugs really helped me with my dryness. One day I plan to take them out. I have also heard that you need to calm down the eyelid inflammation before you get plugs but maybe only in serious inflammation. Really I don't think anybody understands this issue.

They say for some people with very bacterial MGD, like LM's, resultant bacterial enzyme soup is inflammatory on eye surface, also can result in canalicular infection. If bacterial MG infection is controlled or cleared, plugs will be great. That's what we've been told, it's a skill and judgement thing for the ophth.

[neve]

Hi Margaret -Just called the opth office for plugs price. It is $367 per eye -1 plug for $367 and no reduction at all with no insurance. When I asked the price of plugs as I was leaving the office, I was told $367 (I thought they said $467). I said plugs, plural. I will be mentioning this to my doc so maybe other people w/ no insurance can get an accurate price quote. How hard would it have been to say "Each plug is $367.00, not "plugs are $367". I am sure mentioning it will not help me but maybe it will help someone else. Pretty irritated right now and I don't mean my eyes.

Thanks Margaret! And just as an aside, I do not live in New York City; there it would no doubt be $1,000 for each plug and I kid you not.

[neve]

Thanks littlemermaid - so far, plugs will probably happen for me but I will be trying several sessions of acupuncture prior to spending close to $800 for 2 plugs (no insurance). Was not told I needed antibiotics and my lids are clear...skill and judgement is paramount and hoping my opth possesses these qualities. Not too happy right now but thanks so much for your response.