I don't want my eye closed again, please help!

[Angel894]

I had my AN removed in March of 09.  They did a tersorraphy (sp?).  I went to am ophthalmologist who also does cosmetic eye surgery to have it fixed on the 16th of Nov after he said  it looked ready.  Had my post op yesterday...cornea is dry.  I go back on the 13th.  If it's any worse, closed it goes. 

I don't understand hot some people say it isn't that bad.  Maybe mine was more?  It was closed on the inside of the eye and out.  There was a very small opening, but it was obvious and horrible.  I have not allowed one picture of myself since it happened.  Plus my vision was sooo strained with it.  I haven't driven since.  I stay at home with my 2 year old.  You can imagine the sanity issues that are going on here. 

Plus, I remember the first time around.  I was awake.  He used a local anesthetic.  I HEARD him cutting my skin.  I heard it.  I still feel ill thinking about it.  This isn't the same dr.  But why does it have to be closed?!?  Wind still gets in.  My eye still gets dry.  Shouldn't they be trying to figure out a way to make my eyes make tears instead of making me feel so bad about myself.  At the moment, I feel like I'd rather go blind.

[saralynn143]

I keep Refresh PM gel on my eye around the clock. In the winter I have to put it on morning, afternoon and bedtime. My vision on that side is blurry but my brain has learned to compensate so that most of the time it is not an issue. This is the only way I can keep my cornea from drying out.

Do you have an eyelid implant? That helps but will not by itself keep the cornea from drying. You can also ask your ophthalmologist about whether puntal plugs would help in your situation. Depends on whether your eye still produces tears.

Best wishes. I understand how you feel.

[Kaybo]

Angel894~
OH...I KNOW EXACTLY ABOUT THE HEARING HIM CUT THING!!  When I had my eye sewn totally shut about 3 months after my AN surgery, I could HEAR the cutting also -  that was by far the most traumatic thing I've experienced.  In fact, when I got the weights, I had them give me something to relax so I wouldn't hear/associate that!  I am a little confused as to why they are just sewning it shut (partial, it sounds like?) instead of trying other things...like a gold weight?  I've had many of those over the years and they really helped me...I have had scratches (very bad ones) but have never sewed my eye shut after the initial time when it was so severe.  I use Refresh PM 24/7 - it does distort my vision but I have become accustomed to it.  I don't really see out of that eye but I still drive - I started driving about 4-5 months out.  My eye wasn't necessarily what kept me from driving - I had a stroke and my reaction time was too slow...I would ask the Dr. if there are other options you could TRY first...

Please feel free to PM with you phone number - I'd be happy to chat with you - I certainly know how it is to stay home alone with a little one & can't imagine not being able to get out at all...

K

[Angel894]

No implants or anything have ever been tried.  He talked about maybe doing gold implants before the surgery, but ow the talk is going straight back to closure.  The tear duct implant thing...I've been reading.  Think I could ask him to try that and weights if it comes down to it?  I know it's vain and this is my health/vision.  But I am 23.  The last thing I want is to have people staring at me funny.  After having a baby and being pumped full of steroids, I feel self-conscious enough, thank you.  Though I had the surgery when my son was 9 months old so it actually took him several days to get used to my eye "working".

[Cheryl R]

I would also see another opthalmalogist.         Is there a neuropthalmalogist any where close to you, possibly at a large university?    I have heard the eye closure is is not done as much as a long time ago and you do have the right to refuse it and get another opinion with very good constant use of eye gel in the meantime.           You had a very very large AN I see on your profile.    Nighttime eye care has some people wearing some types of googles.        Nancyann has good info on what she uses.     
I have have been thru non blinking eye which did improve over time but case was a facial nerve tumor and severed and nerve graft done at the same time.              Did you have an intact facial nerve post surgery?
        Feel welcome to ask all the questions you want here and we try to help.                         Cheryl R

[Angel894]

I would also see another opthalmalogist.         Is there a neuropthalmalogist any where close to you, possibly at a large university?    I have heard the eye closure is is not done as much as a long time ago and you do have the right to refuse it and get another opinion with very good constant use of eye gel in the meantime.           You had a very very large AN I see on your profile.    Nighttime eye care has some people wearing some types of googles.        Nancyann has good info on what she uses.     
I have have been thru non blinking eye which did improve over time but case was a facial nerve tumor and severed and nerve graft done at the same time.              Did you have an intact facial nerve post surgery?
        Feel welcome to ask all the questions you want here and we try to help.                         Cheryl R

This guy is my 3rd ophthalmologist.  Everyone keeps telling me he is the best.  I will look into finding a neuropathoalmalogist.  I know this sounds bad, but I have no clue about the facial nerve.  I had so much to worry about after the surgery.  I do know that I can blink perfectly and with my eye open, aside from slight bruising and puffyness left from the surgery, you'd never know anything was "wrong".  My smile is even, nothing is droopy.  I do have limited feeling.

[Cheryl R]

Yeah, You do have an intact facial nerve!        If you have blink, also then think very good frequent gel use would help.    This dr might be good for cosmetic but my personal opinion is that it is not cosmetic that you are going for.            There should be some other posts in time with others views and think the eye shut is not the best option for your case.     This just is our views though so and the eye does need good care.              I just know my own eye experience and having been on forum for long time due to my NF2.   
                                                      Cheryl R

[Angel894]

Sooo...I used to work for an Optometrist.  He is the one who sent me to the opthamologist who sent me to this guy.  I am thinking I am going to go back to the one he sent me to.  The current one talks about doing it back like he is going out to get the mail....I checked and asked the dr I worked for.  No neuro opthamolagist around here.  He said he'll dig a little to double check for me.  He is not an opthamologist, but he did give me some advice from what he knows and has seen.  I am not just letting this guy sew my eye shut again without a fight.

[moe]

Angel,
So sorry to hear about all this mess with the eye

I'm wondering, is a neuropathoalmalogist the same as an oculoplastic surgeon?

I had an ocuplastic surgeon do the tarsorrhaphy (SP?) right after my surgery, because my face nerve was cut.  It was reversed after 3 months, and a gold weight was placed on the upper eye lid. (This doctor was so concerned about the cornea drying out, because you can lose the eye if it gets too dry.)

I'm also wondering if they told you to do the eye gel 24/7? I too run around with blurry vision in the left eye, but am accustomed  to it. I use paper tape at night (thin strip) to keep eye closed and always go to sleep with an eye pillow.

I can totally understand your angst about the threat of getting your eye stitched shut, given the fact that you CAN blink! And of course you are not being VAIN, just realistic.
I have been threatened with another tarsorrhaphy if my cornea gets too dry. So it is lubed up 24/7. The thought of it disgusts me.
(Being home with a toddler to boot, is not my idea of fun.)
Hang in there, lube that eye up and get a 4th opinion if need be!
Maureen
Let us know how things progress.

[Angel894]

Just picked up some Refresh PM.  Even my bad eye almost teared up when I saw the price for such a little tub.     But seriously.  We had Chik-Fil-A for dinner.  I ate a spicy chicken sandwhich.  My bad eye watered.  No tears, but it watered!  My husband even said he saw the sheen of moisture forming.  So I am now dead set against letting him tell me it needs to be closed again.  I have been using Refresh Liquigel fairly often.  My eye is still a little bloodshot, but they both are.  The redness is gone.  I have some paper tape left over, but I am not sure it will make a difference at night.  My eye closes all the way at night.  I will try an eye mask, though. 

I was thinking about maybe a warm, damp compress a couple of times a day.  I am hoping it will help keep moisture in and maybe help relax something and get the tears flowing.

[Kaybo]

YEP - expensive stuff but it works!  I have been forking up that kind of money for 15 years now!!    If your eye blinks so much - maybe you won't have to do it that long!!  Try putting some in your good eye (night only) and it will help it feel better!!  That's what it's real purpose anyway! 

K   

[Angel894]

So I have read Fish oil works for some people.  The Dr I worked for told me studies have proven time and time again that Fish oil can help with dry eyes.  He told me to look for Omega 3 and 6.  The only thing I found with both was a Flax, Fish, Borage mix.  So after I opened it, I started wondering if this is gonna bite me in the butt.  Any advice on taking supplements like this?

[lori67]

I went to an oculoplastic surgeon for my partial tarsorrhaphy and he did an amazing job.  I've had it for 3 years now and you can barely tell.  I also had my tear ducts cauterized to try to keep the few tears that I do make in my eye.  That has worked great for me also.

I use the Refresh PM at night (I know it's expensive, but worth it).  I bought a tube of the Walgreen's brand stuff - the box said "Compare to Refresh PM" and it was horrible.  It was like water and didn't do a thing.  So, the good stuff is worth the extra expense to me.  During the day I use Theratears or Optive.  If find that if I use anything with preservatives, my eye gets red and irritated.  You might want to give the preservative free stuff a try and see if that helps.  I a;lso make sure I have my sunglasses on anytime I'm outside to keep the wind out of my eye.  I also have a cheap pair of very low magnification reading glasses I got at the pharmacy that I can put on if I'm indoors and find it dry.  My daughters take gymnastics and with the fans blowing all the time, my eye was alway so uncomfortable, so I just put those on to help protect it a bit.

I think if I were in your situation, I'd say no to the procedure too.  It does matter what you look like, it's not a matter of being vain.  I'd keep searching for some other options.

As far as the supplements, the mixture you got should be fine.  Omega fatty acids can come from different sources.  It won't hurt.  Another thing I just recently started was Restasis - the eye drops for dry eyes (it's a prescription).  We weren't sure they would work because my dry eye is not like just run-of-the-mill dry eye, but after a month of using it, it really seems to be helping.

Good luck to you and I hope you get some relief soon!
Lori

[Nickittynic]

Oh yuck, it sounds like your tarsorrhaphy was really big! It sounds like that's the only thing they've tried for you? Hmm... that's weird. I always thought that was typically a last resort kind of thing. 

Like many of the others, I also use Refresh PM (or the Target Brand night time ointment, which I actually like better), mostly at night but also sometimes in the day if needed. I use Refresh Celluvisc drops throughout the day, as needed. For the first month out of sugery I wore a 'moisture chamber' (aka piece of plastic wrap held on with a ring of vaseline) over my eye constantly, because it didn't close very much or blink at all.
To be able to get rid of the moisture chamber, I had a gold weight implanted in my upper lid, which helped with the closure.
Then, when my eye was still feeling irritated all the time, I got a punctal plug in my lower tear duct. This helped immensely, because the artifical drops I put in were then staying in my eye instead of just washing right out.
Everything was going smoothly until a couple months ago when I let my eye get too dried out. Then my doc put in an upper punctal plug. This helps even more with keeping the drops in. Now the only place for them to go is down my cheek. So they last longer.
Finally, I did have a small tarsorrhaphy done not long ago, to help avoid damage to the 1mm of cornea that just never gets covered with eye lid. My eyes don't match, but it doesn't look terrible. The doctor who did it said he only sewed "a very little bit". It sure was painful though! I dn't blame you for not wanting that again! It doesn't seem right for your doctor to think it's an easy "flip flop" procedure. 

Anyway, I post my whole history just to give you some ideas of things that can be tried first.

Also, I would be careful with the warm compresses. I know they can feel good (especially when your eye is full of ointment 'crusties'!), but I was warned to be really careful with them. I guess because an exposed cornea gets 'numb', and it's hard to tell if it's getting too hot under the compress and damaging your eye.

[Angel894]

Had to move my appt from the 13th to the 15th.  The eye has been doing a lot better.  The cloud that has been in my vision (I was told from being dry) is gone.  Between Liquigel and PM my eye feels great.  Crossing my fingers and bracing for a fight.