My story - Beware of Punctal Cautery & EyeLash Electrolysis!

[shanku]

Dear Fellow Sufferers,

I think I have "isolated" why I have LAGOPHTHALMOS condition or how I got it in its current condition:

BackGround:
========
I had dry eyes from 2007 and it was in mild/moderate forms and started along with my Sinus problems.

From 2010, I started hearing about eyelid problems like lagophthalmos, incomplete blinking, MGD(meibomian gland inflammation) etc. from the eye doctors

Now the eyelid problems can also lead to dry eyes but their origin are kind of separate or can be from a different source. Here is what I think how I got my eyelid abnormalities:

I think before 2009 or say mid-2010, I did have mild/moderate eyelid problems or else I would have heard of those during my frequent eye doctor( also reputed docs) visits during that time. Also, remember lot of normal people usually have mild/moderate lagophthalmos with out any problem.

So, question is what changed from 2009-2010, which I think is this one :

Event Time lines:
===========
2007-2009: Dry Eyes were very mild/moderate, I tried some plugs but those fell out; so, gave up and was just managing with lubricating drops. Was having lot of headaches and ENTs were not sure if those are from Sinuses and suggested me to see good eye doctor to figure out if the headaches were from dry eyes.

So, In Nov 2009, I started seeing a new corneal specialist in my area (listed as Best Doctors 2001-2010) who is considered best dry eye expert among his peers in this area. His visit notes from that day says that I had 1.5mm lagophthalmos on that first visit; In Dec 2009, he performed my lower cauteries on both eyes with out trying other options like permanent punctal plugs etc.; and immediately sent me for oculoplastic doctor (incidentally his wife and member of ASOPRS) evaluation for my mild lagophthalmos who decided to hold off eyelid surgery but kept it on radar.

In June 2010, this same corneal specialist noticed some ingrown eyelashes on left eye and suggested removing those immediately. Those eyelashes were not causing me any issues and were just noticed in a routine visit. I was not knowing the exact procedure until after the fact because all he told me that oculoplastic doc (again same oculoplastic doc) will remove those lashes which I thought was harmless and not a big deal. I was taken by surprise when the oculoplastic doc performed electrolysis for ingrown eyelashes on left eye just to take care of couple of those apparently harmless eyelashes! Now when I went to BFS, I met several patients with severe eyelash issues for which they were there for getting sclerals. I was more surprised when I learned from them that none of them underwent eyelash electrolysis; rather all of them regularly get those plucked during eye doc visits. So, I now find electrolysis step was completely unnecessary and extreme procedure for my condition.

Now when I started having all these problems (corneal pitting, abrasions, scarring) recently(last 6 months), this same specialist keeps pushing me towards eyelid surgery (tarsorrhaphy, gold weight implant) only as next step which must be done with same oculoplastic doc and won't listen to me on anything else. He frequently uses these phrases - "your eyes are profoundly dry which I have never seen!" or "your house is on fire!" to push his treatments. No other docs who examines me gave any similar warnings.

I was doubting my thyroid may be causing eyelid issues and have ruled out Thyroid Eye Disease with exhaustive blood tests (including TSI, T3, T4, peroxidase antibodies etc.) with endocrinologist & MRI for extra ocular muscle enlargement with multiple oculoplastic doctors.

I was concerned about eyelid surgery and I wanted to explore other non-surgical options. So, last fall, I enlisted for "Expert Medical Opinion program" where a retired Harvard ophthalmology expert professor reviewed my medical records and provided his findings and opinions on my case. He provided his kind expert findings/opinion & postulated in Dec 2011:

Eyelash electrolysis and punctal cautery was wrong move in my case; The combination of rosacea and allergies combine to form an underlying, seething, low-level, chronic state of inflammation. This combination could trigger the meibomian gland inflammation leading to the poor lubrication of the corneas. The same low-grade level of inflammation could account for an extra-strong healing response after the lid and eye lash cautery, leading to lid distortion and retraction—sort of like a gasoline-soaked rag and a spark.

Analysis:
=====
From both these procedures, my both lower eyelids got "distorted, further retracted and inflammed" as those did not like these mechanical interventions. Left eyelid suffered more as it was treated with electrolysis additionally. And gave rise to severe lagophthalmos (3-3.5mm on left, 2-3 mm on right) at nasal fissure as of today, incomplete blinking, MGD(gland inflammation) and I started hearing about those issues from later part of 2010 from all eye docs.

I concluded this after deep analysis for last several months based on timeline, doctor comments & medical records during those times and especially after getting the Harvard Professor's expert opinion in Dec. I confirmed this theory again by a Realself QA Posting with another reputed oculoplastic doc from LA:

http://www.realself.com/question/low...er_url2#456285

Thanks much for reading my long story!

It is evident how seeking treatments for my mild/moderate dry eye problem, gave birth to new problems - like eyelid abnormalities, deformities or made my problems severe or rather pushed me to the edge!

Now, in Oct 2011 seeking treatment with LipiFlow for MGD gave me a Huge Corneal Scarring because of gross negligence of safety guidelines by the performing doctors.

In hindsight, looks like many of my problems were either created or made more severe by these questionable treatments or procedures. Now, these newer problems or severe conditions call for bigger/complicated surgery which comes with its own problems.

I sincerely repent getting these treatments by just trusting the big doctors in my area for relief rather than much self research/study/knowledge/understanding/thoughts or without connecting with other folks who has experience with these treatments.

So, I hope other DryEye Zone members can probably learn & benefit from my sufferings & experience and be more careful while choosing these procedures & be aware of the worst consequences rather than repenting later. I think one always have to be prepared for the worst case scenarios and ask themselves, if they are ready for the worst case scenarios after deep consideration/thoughts, knowledge and others experiences.

This reminds be about the common idiom - 'Out of the frying pan, into the fire'! If possible we should try best to not to land there.

[Hopeful2]

Wow Shanku! I am sooo sorry to hear what you have been through. It really does sound like the eyelash electrolysis was too drastic. I too have the odd eyelash that is growing out of its normal path. Thank you for your warning. . . I will certainly not be looking at electrolysis to remove it.

It is so disheartening to hear about doctors appearing to take advantage of their patients. I had lasik 8 months ago and I think the doctor that I saw was interested in profit first. If they had really been interested in my well being, they would have pursued my problems with wearing contacts, prior to giving me the surgery. Now I have had to cope with 8 months of dry eye. Thankfully my eyes are slowly improving. I am now optimistic that I can come to a place of comfort with my eyes. Having said that, the past 8 months have been absolutely the MOST difficult time of my life!!

I gain some comfort in warning others of the potential for problems with refractive surgery. I thank you very much for sharing your experience with others. I am certain you have already helped at least one other person avoid unnecessary eyelid surgery.

Remember that our bodies are capable of amazing feats of regenerative healing.

P.S. I would be looking into getting another eye doctor. You also might want to see if you can report your issues with the college of physicians and surgeons. They may be interested in what you have to say.

Best of eye health to you Shanku.

[shanku]

Thanks Hopeful2! I am very glad that my experience is valuable to others and can possibly saved them from this kind of misery.

I think majority of this eye industry is geared towards research on profit making drugs & devices and doctors towards unnecessary surgeries. If they were seriously interested in finding solutions for dry eye, then we probably would have had better cures and management tools for it.

I think - sometimes less is more! So, doing less treatment is better as all these stuffs are not well established/tested. I was recently prescribed neuropathic pain meds and saliva production substances but am staying away from those.

Last 8-9 months has been very difficult time for me as well although I had dry eyes for last 5 years. I was out on disability for 2 months with traumas that occurred to my eye and was contemplating if I should quit my computer job. By God's grace and as you said - Body's own healing capabilities - am somewhat back on track. My eye condition deteriorated so much that it was hard to read things on this board, or research anything online. I used to print the email threads from this board and would request my spouse to read it to me (my eyes were patched for several months in pain). This was the only solace during those difficult moments.

I am looking forward to something which can let me maintain my current condition and lead a predictable life. I think looking for a cure is not practical. Aiming a predictable course itself is very difficult target in my opinion.

I think we can possibly choose only less invasive, well established procedures etc. which may be less harmful in case it does not make the condition better and where there is chance to possibly heal from the damage done from those. It needs lot of work but may be worth it!

BTW, I took the Harvard professor's 30-page report to all the eye docs (senior most professors in the top 2 reputed medical teaching hospitals in my area) I see here and pointed out the relevant page to them; Most of them smirked, ridiculed at it and trashed it. They refused to keep it with the voluminous medical file they have on me. Only my allergist cared to look at it. Remember they have only 15 minutes for each patients - no matter how complicated the case is and do not have the attitude, time, patience to accept different opinions and rarely learn from their mistakes.

Always good thoughts! God Bless!

[hirentherock]

Shanku
I think im luckier than others...as my case in relatively severe than the other cases my doctor sees.Hence i do not get robbed for money that much.
Also i do not get much relief from any of the treatments.
I too had cauttery 3 times.once in 2007, 2nd in 2010 and the last one in dec 2011.
the third cauttery was kind of forced by me as i was feeling worse than before.Hence i had doubt that probably punctums are opened and im feeling the discomfort.
Doctor did many things to prove me that punctums are not opened but still i insisted and got the surgical process through in dec 2011.after surgery he told me that probably this is going to be the last time he is performing cauttery on my eyes.He said i would really advise the surgeries not to be done so often on such severe photophobic and damaged eye.surgery costed me about 40$.

I needed to get cataract surgery done in my working eye.The need for surgery is vision improvement and not for any other discomforts.
Local doctors advises me to avoid surgery as long as possible.If the vision is sufficient for daily routine i should not go for surgery, he added.

But im going to get the surgery done soon to a cataract specialist http://www.raghudeepeyeclinic.com/or...eadership.html

Wish me luck.
I will revert u soon regarding lubricants details as asked in PM.

[shanku]

Hi Hiren,
Glad and amazed to see that you have survived 3 cauteries. Wish you lots of Good Luck for the upcoming surgery and keep us posted on how that works for you. Hope you have done the due diligence on it. You're in my prayers!

[tearless2]

Thank you Shanku for sharing your dry eye journey in such detail. It is terrible that your eye doctor recommended these additional and unnecessary treatments. How does he sleep at night? Perhaps there is a way to rate him as a doctor on the internet and/or share your experiences so other's will know. Who rated him as a best doctor? Perhaps you should contact them with your story.

It really makes me think about all the care providers in mine and my family's life and what monetary issues may be driving their treatment choices. After reading your story and many others' here on DEZ, I am a lot more cynical when it comes to following their advice.

I wish you continued healing.

[shanku]

Thanks tearless2!

Perhaps there is a way to rate him as a doctor on the internet and/or share your experiences so other's will know. Who rated him as a best doctor? Perhaps you should contact them with your story.

Good Questions! I believe this best doctors rating is a "closed" system, they call it peer rating....patients do not have a voice there. Unfortunately, these same folks are teachers too...imagine what they are teaching these next generation of docs. I wonder if there is a way to hold these doctors responsible? At least, some how they should be made to understand that they need to be conservative with the choices and not repeat similar mistakes with future patients. It's not surprising that I find it hard to trust Docs anymore. Earlier many a times I have found myself not wanting to disappoint them by not choosing their treatment suggestions....That was very stupid of me I know. I think "trust but verify" is a good policy. Quality doctors striving for patient's long term welfare are very few and far between!