Why I am glad I did not get a Gold weight and/or Tarsorrhaphy-- My story

[pmcollings]

Hi all,

I thought my post might help some that are considering these procedures after their AN removal. 

I had my AN removed the end of last October 2012.  I am almost 9 mo. out now.  After my surgery, my eyelid would not close well.  I endured painful dry eye and tried everything.  I taped, eye-dropped, saran wrapped, eye exercises, all to no avail.  I finally went to Specialist and he recommended the procedures to help with the closing of my eyelid.  I was very upset, as you can well imagine, I did not want another operation but I could not see well either - my vision was blurry.  I decided to wait it out, and with the help of my Ophthalmologist we treated my eye with 2x daily antibiotic, I continued the eye drops, and kept taping at night.  My eye doctor checked me once a month to make sure my eye was not getting any worse.  Slowly it started to improve. I did not need to do the drops every hour, I stopped taping at night and then last week I noticed I could close my lid almost all the way.  There is a new development though.  Now my eye lid is a tiny bit droopy when I make certain expressions, like pursing my lips.   My doctor said this can happen and it is the muscles working against each other and the lid may get stronger but it may be permanent - only time will tell.  If I had gotten the gold weight, my eyelid would be VERY droopy now. 
I am so happy I waited it out.  If the droopiness continues, I will look into botox as an option. 
So my advice to anyone considering this eye procedure, if you are early on in your recovery, please be patient.  Things do change. 
Best wishes to everyone !
Pam

[Suu]

WTG Pam!  It seems that your facial nerve is beginning to recover?
I've have the tarsorrhaphy done (lateral) and going in to have it extended.  I've tried everything to lube my eye but it's a desert. I had waited quite some time before getting it done. The extended tars it to help with the minimal eye blinking that I have and hopefully not have to use as much to keep it wet.
I'm so happy for you! 
Best wishes,
Suu xx

[nancyann]

Pam: so happy for you that you didn't need the weight, but for those of us who have permanent facial paralysis, the eye weight is a necessity.  My upper lid was retracted into the eye socket - I looked like I had a skeleton eye. So for me, my eye weight is a blessing, & I will have it the rest of my life.  Again, so happy for you that your facial nerve came 'back to life.'
Always good thoughts, Nancy

[pmcollings]

Hi Suu and Nancyann,

I am still having problems, the nerve is still not all the way back but I am glad I did not jump into the operation.  I do understand that some must have the procedures and what a godsend it is.  The 'specialist' I went to was so eager to perform the operation.  My AN surgery has pretty much wiped out my savings so I really am happy I don't need it at this point.  No telling what the future will hold.  10 months since my surgery and never thought I would still be having problem - ARG !!!  Thank you both for your responses and take care !!! 
Pam

[PamJ]

Hi Pam I had terrible trouble with my eye after my An for a year I had eye drops, tapped it down, lacralube and exercises but still couldn't close my eye to the fact the hospital was worried I could develop ulcers on my cornea.  I had tarrsophapy performed and kept it like that for a year and the relief was instant.  I have now had my tarrsophahy reversed and my eye still doesn't close properly I have a 2mm gap but it was the right choice for me.  I'm so pleased for you the exercises worked for you. Pam

[pmcollings]

Hi Pam J - I'm glad the operation gave you some relief.  2mm gap is a lot better than not closing at all and the taping, lubing, exercising. 
Since I have written that post, my eye situation has changed.  NOW my eye is closing a bit too much !!!!  I might be a candidate for Botox.  I surely am sick of all this nonsense - lol.  The new normal - ugh ! ~~~~ Pam C

[Gloria Nailor]

I am so glad to hear that your paralysis is improving.  I regained some movement in my mouth at a year out, so sometimes things do recover with time.  Unfortunately, I did not regain movement with my eye lid. I did choose to have the tarsorrhaphy and gold weight and am now able to close my eye with effort. I was needing hourly eye drops before the stitch was placed and I no longer need eye drops.  Originally I thought I would have surgery to help the eye lid close in the future, but I think I will just keep my gold weight and stitch. I must admit, I do not like the way the stitch in my eye lid looks but having some control over closing it and not needing the eye drops are wonderful.  Good luck, I hope you continue to improve. Be well !

[pmcollings]

I have had new developments in my eye that are not good.  An ulcer which is not healing and even worse dryness.  Today I had a corneal lens put over the entire eye.  Next step might be the Tarsorrhaphy.  I was hoping I wouldn't have to go this route.    Glorianailor, you mentioned you don't like the way it looks ?  How so ?  I am so frustrated with this eye. 

[Suu]

Hi all
Gloria - is your eye only temporarily stitched?
Pam - I have mine stitched almost half way now.  I'll admit that I was very upset when I first had it done (vainness sets in ) but now I'm used to it and haven't had to use lube through the day hardly at all.  I had the surgery, had the stitches out, and if I can have it reversed then they cut the lids again and it 'heals open'.  I can't see that happening as all of the ops that I've had done to get some feeling back haven't had the desired effect.
Best of luck and please keep us informed of your progress?
Suu xxoo

[PamJ]

Hi I had my eye completely stitched for a year and when they opened it it had worked but unfortunately my eye had dropped through muscle weakness, they're not sure if it was because of the eyelid being closed for so long or due to the tumour I had out.  I have had an op on my eye to  bring it back up in line with my other eye and botox to help it and I'm glad to say no soreness at all.

Pam

[Suu]

I have had an op on my eye to  bring it back up in line with my other eye and botox to help it and I'm glad to say no soreness at all.

Pam

That is so good to know.  I don't know if I'm going to have mine reversed as I am so darn scared of hospitals now.
xxoo

[PamJ]

Hi Suu if you're happy with the way your eye is now I'd leave it as it is.  After I had my eye lifted and botox injected into my eye lid because it was drooping everything was fine, unfortunately now the botox has kicked in it's stopped my eyelid blinking and I again have a sore I.  I'm hoping when the botox wears off in 3 months time I'll be able to blink again and all will be well.  Pam

[Gloria Nailor]

I am so sorry that I have not checked back sooner. My stitch supposedly is temporay - you cannot see it - the skin healed over the stitches, but I am led to believe that it can be taken out if I wanted by just slicing between the eye lids and removing the stitch. It looks like I have pinched together the outer edges of my eye by about 1/2 mm.  When you look directly at me, you might not notice it, but if you look from the side you can see the lids are fused and I just don't like the way it looks, but I plan on keeping it.  I was using HOURLY eye drops and now I use NONE : )  A huge change - it was so dry and painful before.  Dr Teresa Hadlock at Mass eye/ear does amazing surgeries to bring back movement with facial paralysis, I met her and thought I would do that at some point, but now I do not think I will, I have come to terms with my gold weight and stitch.  Take care

[Brytink]

I'm 24 years left AN post op. 1996 I had a Torsorphy(sp) done and besides it being ugly it really helped I had no eye pain and had to use no ointment.  2004 we elected to have it reversed,  My eye has days it fills like pins are sticking in it and around my temple and above my left eye.  I  put ointment in my eye constantly,  I just would like to know medicaly why my eye hurts like it dose and all around it.  I still wear makeup and am always wiping my eye because it looks like I'm crying.  Thank God I'm Alive and It's a Great testimony for what God has done in MY life.   Have a Blessed Day:)

[Jill Marie]

Hi Brytink,

Have you checked out any of the postings about the Scleral Lens, please do.  Several of us on the board have gotten the lens or one like it and we don't have to use ointment CONSTANTLY anymore.  If you get a lens it will hopefully get rid of the pain your experiencing with your eye.  Jill