Author Topic: What to do with my eye  (Read 10968 times)

william5822

  • New Member
  • *
  • Posts: 28
What to do with my eye
« on: September 08, 2015, 08:50:32 am »
December 2013 was my husbands AN surgery. Unfortunately he did have facial nerve damage which has not resolved as of to date. In 2014 we had a gold weight implant done to help with his eye.
I took him to the eye doctor this past weekend. I am sad to say that his vision in that eye is now 20/50...which it was 20/20 before the surgery. His cornea is covered in scratches and very dry. We keep drops in his eyes but I am just heartbroken that not only has his lost his hearing....his facial nerves...but now his vision on that side.

What other options would we have to even remotely help with this eye? Contacts? I just don't know.
3 cm AN removed 12.3.13 - 12 hours in surgery
Emory Healthcare Midtown Atlanta
Left Side facial paralysis - intact facial nerve
1.31.14 - Gold weight implant and tarsal flap
2.17.14 RETURNED to work :)
10.6.14 - 10 month MRI shows stable

jaqiday

  • New Member
  • *
  • Posts: 41
Re: What to do with my eye
« Reply #1 on: September 08, 2015, 11:31:51 am »
I also have facial paralysis and have been dealing with severe dry eye for 6 months. I am seeing Dr monday (sept 14) to look into a jupiter/scleral lens. I will post after the visit as to how it went. You might look into a scleral lens as well. Search the forum for more info.

I have not found much help from my Drs. I really think unless they have a paralyzed dry eye, they have no clue how to treat it. I was sent home with regular drops which lasted about 30 seconds before my eye was screaming in pain.  Even the neuro opthamologist hasn't been much help, told me to wait till at least 6 months for surgery but didn't suggest anything other than drops. I am waiting for surgery and eyelid weight for another couple of months.

Here is what I do now:
Night - Refresh PM ointment across inner lower lid, gel drops and cover eye with tranquil eyes. I modified mine to only be a single patch. I soak it in hot water, wring it out and wear all night. Really helps with overall dryness.

Day -  Systane gel drops, let it set for a bit then a dab of ointment, and another gel drop. This is the only thing that has worked for me. I rinse the eye with warm water and repeat the ointment and gel drops as needed. I also keep thinner ointment such as Blink on me at all times and use any time the eye feels dry.

You have to keep the eye moist. As soon as i feel a tinge of pain or even think its dry, I use drops. Preferably do drops before you feel any pain. Hot weather, AC fans makes it all worse. You just have to keep on top of the dryness.  Keeping the eye moist at night has helped me the most. It took a while to get it to be tolerable but the tranquil eyes have really helped.  My cornea is healthy but vision is blurry from drops etc.

Its been 6 months of hell, but I am finally starting to be able to actually go out for most of a day.  I still am hopeful this will improve but if it doesn't I will at least have my eyelid tightened.

Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

Kerrybr92

  • Jr. Member
  • **
  • Posts: 52
Re: What to do with my eye
« Reply #2 on: September 08, 2015, 06:16:02 pm »
I am so sorry to hear that there has been damage to his cornea.  I know for me the only way to prevent damage was to have lube in my eye 24/7.  Although that would protect my eye I was not able to see out of it.  It was way to blurry.

I have had amazing results with a sclerel lens from the Boston Foundation for Sight.  I see them in Boston but there are clinics all over the country in particular at large teaching hospital.  I can not recommend the lens enough.  The lens is a large hard contact lens that you fill with saline before inserting.  Once in your eye it baths your cornea all day.  And the best thing is there is no irritation and you can see clearly.

Good luck.
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #3 on: September 11, 2015, 08:04:18 pm »
I’m six years post op and my left eye isn’t any better than is was the day I was discharged from the hospital. The nerves have not rebounded and I still keep it taped shut the majority of each day. I tried the implant route, external weight, and even had it sown partially closed for a time. Sadly, I don’t expect it to ever improve.

Now the upside: While the vision in my left ear has dropped off a bit, because I keep it taped 20 hours a day, the surface is in remarkably good condition.

Tape is my eyes best friend. I go through two + rolls a week of clear adhesive tape which allows moisture to pass thru. My recommendation is to go the tape route until full function returns.

Take Care,

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

Jill Marie

  • Hero Member
  • *****
  • Posts: 549
Re: What to do with my eye
« Reply #4 on: September 11, 2015, 11:53:41 pm »
William & Doc. B. please look into the scleral lens recommended by both jaqiday & Kerrybr92, I've had the lens for almost 3 years now and love it.  Going on vacation in the morning will post more about the lens when I get back.  My vacation will be a lot better then the ones in previous years because of the lens.  Please search this site for more info. on the lens.  Jill Marie  :) :)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #5 on: September 12, 2015, 07:17:17 am »
This is good info Jill. I have not heard about these before. I’m going to check with my eye doctor on Monday.

Thank you!

Doc

https://en.wikipedia.org/wiki/Scleral_lens
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

keithmac

  • Full Member
  • ***
  • Posts: 130
Re: What to do with my eye
« Reply #6 on: September 13, 2015, 01:42:35 pm »
remarkable!    :)

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #7 on: September 14, 2015, 05:19:30 pm »
So I’m being fitted for my first Scleral Lens tomorrow morning. I found an Ophthalmologist ten minutes away that specializes in all things contacts, including Scleral Lens. Can’t wait to see if this will finally make living with my bum left eye any easier after six years of post surgery pain.

I have to credit this thread and Jill Marie’s post following mine. Thank you!

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

jaqiday

  • New Member
  • *
  • Posts: 41
Re: What to do with my eye
« Reply #8 on: September 14, 2015, 05:34:31 pm »
Great news. I had my appt today but will have to wait two weeks for the lens to come in. In the short time I was wearing the test lens in the optometrist office I had no eye pain and could see almost clearly (still had some ointment in my eye).  I am now looking forward to something instead of endless eye irritation and pain.

My new normal finally isn't looking so bad.  I am glad to see someone else is getting help!
Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #9 on: September 14, 2015, 05:56:02 pm »
You make it sound so good. I won’t be able to sleep tonight just thinking about my appointment tomorrow. Like I said, I’ve been six years with the pain and misery.

Glad to here you’re almost there, Jaqiday. FYI - 1800Contacts.Com does Scleral Lens from existing prescriptions if you’re ever in need and an alternate source. I did some homework over the weekend and learned a ton of good info.

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #10 on: September 15, 2015, 09:34:34 am »
Saw the Doctor this morning. Fitting scheduled for next week...yay!
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

keithmac

  • Full Member
  • ***
  • Posts: 130
Re: What to do with my eye
« Reply #11 on: September 15, 2015, 10:34:25 am »
Man this website really can help sufferers!

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: What to do with my eye
« Reply #12 on: September 15, 2015, 10:59:46 am »
...as long as you’re careful to do your own homework, it can be very helpful.
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

jaqiday

  • New Member
  • *
  • Posts: 41
Re: What to do with my eye
« Reply #13 on: September 15, 2015, 11:01:21 am »
Good to know Doc B, Once I get the 'final' lens, I am ordering a back up. I can't imagine waiting another three weeks for a new one if something happens once I get used to using it.

I can't imagine 6 years let alone 20 with this condition.  I wish I pushed for this 5 months ago but I was still in post surgery adapting fog. Drs should do more to help the whole body. I am talking to my neuro about it next visit. No one with facial paralysis should endlessly suffer.
Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

keithmac

  • Full Member
  • ***
  • Posts: 130
Re: What to do with my eye
« Reply #14 on: September 15, 2015, 11:50:40 am »
...as long as you’re careful to do your own homework, it can be very helpful.

I try to keep an eye (ouch, terrible pun) on developments for sufferers my side of the big pond.  I don't know if the lens is over here so I'll do some online searches later...

 


anything