ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: nancyann on March 02, 2007, 08:03:52 am
Just an FYI: I'm scheduled for the gold weight removal 3/7.
The doc said he has to wait at least 6 weeks for the upper lid to heal
before he can put in the platinum weight.
I almost cancelled the surgery because I'll have to deal with no weight in
for the 6 weeks, & remembering the pain from dryness....
I don't know what's worse, going thru this or keeping the eye the way it is.
Just needed to vent. Nancy
Sorry to hear that you have to go through that. Hopefully, those 6 weeks will fly by much faster than any other. Maybe, you'll even discover that your eye is not as dry anymore. Wouldn't that be nice!
Hang in there! You can do it! Just think, six weeks is better than six months. :o I hope the platinum weight works well for you. That's what I have and so far so good. Let us all know how it goes for you!
Hi Eve & Denise: yes, I'm hoping the time will pass - I know it will look better when it's all said & done.
Denise - hope you continue to get more & more movement; the 12/7 jump will be the
next issue for me to deal with if nothing more happens over the next 4-6 months.
ps. the girls at work here told me I 'have' to do the surgery - the upper lid is so swollen, even after 8 months.
PSS: DOES ANYONE REMEMBER THE NAME OF THE 'PLASTIC BUBBLE' YOU CAN PUT OVER YOUR EYE AT NIGHT TO HELP BUILD UP MOISTURE ??? I CAN'T FIND IT UNDER EYE ISSUES.
It's called a moisture chamber. I had a hard time finding them. They had to be specially ordered. I used plastic for ahwile. That works great. Also how come they don't put plugs in your tear ducts? I have them and my eye gets watery alot. It doesn't close all the way though so they are now going to put in the gold weight. Good luck to you! :)
Yes, I found a link with the phone # to call.
I'm not getting the plugs because I do get those
'crocodile tears', & they seem to be coming more frequently.
You're going to LOVE the gold weight. What a relief it was
when I finally got mine (however now I have to have it replaced
with platinum - I had some kind of reaction to the gold).
So sorry that you must go thru the discomfort of dry eyes. Were you surprised about the allergic reaction to the gold wt. ? Before the gold wt. implant, Christopher's doctor told us to use Lacrilube at night. It has the consistency of Vasoline and it really helped prevent dryness. He also used eye drops during the day, Alcon Isopto-Tears.
Christopher received a moisture chamber while in the hospital. He never liked it. He seems to be happy with the gold weight. He still uses eye drops daily especially in situations where it is dusty. I imagine that would irritate his eyes. He wears goggles in the shower, to keep the soap out too.
He had the jump graft surgery in October. The doctor used a very,very small portion of the Hypoglossal Nerve, this was done to prevent tongue and swallowing problems. We are hoping to see movement soon. I keep looking for it. I see tone and sometimes I almost see movement. Good luck with both problems.
Hi Chrissmom: I'm so glad you wrote - I was thinking about Chris the other day -
I couldn't remember what month he had the nerve graft (October).
I was real surprised about the reaction to the gold - it's very unusual.
I'll have it removed tomarrow, then the platinum put in in about 8 weeks.
Glad to hear the tone is coming back - it's only been 5 months.
Keep us updated on his journey; I'm behind him in waiting to see if I'll need
the graft (at this point it sure looks like it).
Take care, give Chris my best, Nancy
ps: I was going to order the moisture eye chamber(for night use) for the next 8 weeks - what didn't Chris like about it ?
Hope your surgery goes well today. I work for Dr's from Wills Eye Hospital and Scheie Eye Hospital and the best moisture chamber is the old fashioned saran wrap and the scotch tape that does not show on gift wrap, not the shiny kind. First put in gel or ointment then cut wrap to fit around your eye tape around the area and it creates a soft chamber for your eye. We even use this type of tape for our eye surgery patients it causes the least amount of irritation, especially since you tape the same area each night.
Unfortunately my husband has had to wear the chamber every night since surgery on 7-20-06.
I'm just wondering did you or do you experience pain under the eye, like a pulling or burning sensation, a pain different then dryness of the cornea. Don has had this since day 1. He uses Genteal gel at bedtime and occasionally thru the day, also tears every 15 minutes or so. We keep hoping the instinct to blink will come back soon. He still uses the external weight since he does not want any more surgery, especially since the an surgery caused him so many problems. Keep me posted on your recovery.
Keeping you in our prayers
I wish I would have read about the eye problems before last week. They sent my daughter home with some drops and told her to use them as needed. No one told us that even if her eye is tearing that she still needed to put the drops in. So after going to the eye doctor yesterday we found out she has some cornea damage to her right eye. They put a patch on it and the plan is to have a few stitches put in and then eventually use the contact lense for moisture in her eye. They are not sure how much damage yet because her eye is fire red and really filled with the lube gel and moisture drops. It is surprising what they don't know in the hospital about the eyes. We had a really good neuro surgeon and an ok ENT doctor but they really need to include an eye doctor in their group. I plan to tell them that when we have our office visits. I hope I can be nice and they don't throw me out the door when I start to tell them my daughter could lose her vision because of their stupidity. :) Thanks again to all for the information. This site is extremely helpful and everyone is terrific for sharing their experience with AN.
Maureen my husband had his surgery at Jefferson Hospital in phila by the same Dr's who are sponsoring the symposium this year so I also thought they would know more about the eye problems especially since Jefferson is connected to Wills Eye Hospital. If I did not stay at the hospital with him and notice his eye was not closing he would be in the same situation. I had to call the Dr I work for who is on staff @ Wills to get a consult for his cornea. If i did not work in the field I would not have known to do this. I would expect all of the surgeons to know how often eye problems are a side effect of an surgery, it really makes me wonder why so many patients are left suffering needlessly. Actaully 1 night I did go home to sleep only to find out that during the night a nurse @ jefferson was "cleaning out" my husbands eye with a gauze pad which gave him an abrasion!!! WHY???? would a nurse take this upon themself to do this, there were no orders!!! Like I said Jefferson is hosting the symposium this year and based on our experience we would recommend another opinion.We sure wish we did, my husband has been suffering for almost 8 months now! I hope your daughter does not have any permanent corneal damage.Please keep on top of it with your eye dr, use the drops and gel as often as needed. We will keep her in our prayers as we do with all the other an patients suffering the side effects of surgery.
Hi Meb: I just got back from the surgery. I did use the 'makeshift greenhouse' for the eye prior to the gold weight implant.
I was going to order the moisture chamber, but then I heard Chris didn't like it; today I found out from a fellow surgeon
working with Dr. Jewett that I can purchase them at the Univ. of Miami ENT dept. - WHY DIDN'T THEY TELL ME THIS
FROM THE GET GO ???!!!!
I plan on stopping by there next week when I go to have the stitches removed.
I don't get pain or pulling on the lower lid from the stitches unless I touch that area - it always remained sensitive -
don't know if that is what your husband means.
Well, now I wait about 8 weeks to have the platinum weight put in - I have a feeling it's going to be a long 8 weeks.....
Maureen: I can't believe no one told you/your daughter about taping the eye & using lubricant frequently (actually, I can believe it -
healthcare isn't what it use to be that's for sure....
Nancyann, hope all went well with your surgery. the time will go by fast enough.
I feel lucky that my ENT took care of my eye right from the beginning. He had a patch put on it the day after my surgery. He also had me get the gold weight in my eye before I even left the hospital. I went home with instructions to put ointment in it at bedtime and in the morning.
I saw my eye doctor after being home for a week. He told me I could use gel during the day. Even with all of this care I still ended up scratching my cornea and it turned fire red. It did clear up after about a week and did heal. I still have problems with it turning red from time to time. Part of my problem is that I have no feeling in my cornea. Because of that I had the corner of my eye stitched and my lower eye lid lifted to have less of my exposed. People can't even tell looking at me now. Winter is the worst time of year because the air is so dry.
glad to hear the weight is out, and hope all went well. The 8 weeks will hopefully go by fast for you. Do you get any closure of your lid with no weight on? Don tries to go a few hours without it since it annoys him so much. If he just blinks it is still open about 1-2mm or less, but when he thinks blink he does get it all the way closed. We hope that someday we can take that weight and .... >:( Anyway the pain is his eyeball itself down low hurts all the time the cornea is fine. Dr thinks it's just a nerve-muscle thing???, from him having to think about blinking all the time.?????
Hope you have a quick recovery :)
Hi Meb: The surgery went fine - right now it's my head hurting (I rarely get headaches..)
I can close my eye now only because of the swelling in the upper lid (the fluid is taking the place of the weight),
but once the swelling subsides, it will be wide open, unfortunately.
Sounds to me like Don is headed in the right direction, prior to the weight I could 'think blink' all I wanted
but nothing would move...
Jean: you certainly were lucky to have the weight put in immediately after the AN surgery.
Right now I'm having trouble with using lubricant - the lower lid is so tight & painful if I try to pull it down a little
to get the lubricant in, so I'm constantly using the Systane eye drops.
I'm not looking foward to not being able to blink once the swelling goes away, but 'ya gotta do what ya gotta do'
the end result will be worth it (I hope I hope).
NancyAnn, I don't even try to pull down my lower lid when putting in the ointment. Since my eye won't blink I just put it in near the bottom of the eye. Actually, my husband puts in the ointment. It's his nightly task. I put in the drops during the day. No need to worry about blinking then either. I also have the added advantage of not feeling any of it either.
Jean: If I don't pull the lower lid, the lubricant just sits ON the lower lid & doesn't do anything.
How does it get onto the eyeball if it's not put IN the lid?
Hi Jean: I just tried doing what you said with the lubricant - IT WORKED!!!!
I just let the line go on the lower lid above the eyelashes,
& with several blinks & a little help with my finger on the lower lid, the ointment got in.
THANK YOU !!!!!!!!
The visiting nurse told us that it was ok that Meagan's eye was watering a lot because that was nature's way of tearing up the eye since she couldn't. What an idiot. The eye doctor told us that those tears were not the same as blinking tears and eventually they would stop tearing up the eye because of being overworked. Which did happen. She is going in today to get the stitches in the outer corner of her eye and then some additional drops she can put in the eye. She didn't need this extra problem since she already has gone through so many others and was making a little progress. I watched her like a hawk and asked questions and drove the hospital staff nuts with my questions. I wish I had asked about her eyes.
Hi Maureen: I know, medical people aren't very forthcoming with info at times. Is your daughter getting the 'moisture contact lens' I've heard about
instead of the internal eyelid weight ? The stitches in the outer corner will help. Does she have the facial paralysis, or is the eye issue
a single complication ? I'm looking into Blinkeze external eye weight during the waiting period before the platinum inplant.
Wishing your daughter & you all the best today. Nancy
ps. I get 'those tears' now, I didn't get them post op till maybe 6 months out. No telling when they're coming on. I'll be at work, home, anywhere,
& all of a sudden the huge 'crocodile tears', which I'm grateful for of course... I hate to think they may disappear at some point...
Nanyan, How far in to your recovery are you? I can't be on here long and haven't read all the messages on this board. I am 9 months post op of a 4.5 cm ana. I'm just now getting those croc tears too. I do have the gold weight and outer stitches as well as two tear duct plugs. I was having terrible dry eyes. The best ointment were the sustane gel drops! They have recently been recalled and I had to return all of my unsed bottles. :-\ I have found that wearing goggles at night although not the most ideal way to go to bed, extremely helps during the day! I NEVER have to use drops anymore! I never go to bed w/o my lovely goggles. Do you think I will have my more improvement over the final 9 months of healing time? I've had very little so far. I am currently having craniosacral therapy done 3 times per week and it seems to be firming things up. Gotta run, Thanks! Carol ::)
Hi Carol: I'm also almost 9 months out (surg. date 6/19/06).
I've worn goggles in the past for swimming - they're usually tight on my head
& leave a red rim around the eyes - I can't imagine sleeping with them, but if it helps...
What brand goggles do you use ?
I use Systane lubricant eye drops - are those the ones that were recalled ????? I hadn't heard anything about a recall !!!...
Don't know about more improvement - I certainly wish that for all of us, but each case is individual..
but if you don't have to use drops anymore - THAT'S AMAZING!!!!
Do you have facial paralysis also, or is the eye issue a single complication ?
Take care, write back when you can, Nancy
The drops are called sustane gel drops. They worked great! They came in a green bottle. I'm sure you can call the number on the bottle and ask to be sure. They found mold in several boxes. I'm not sure if that was contributing to my eye infections and redness, dryness, etc. I guess I will never know the cause. I highly recommend the disconinuance of all antihistamines and decongestion meds too! benedryl, cold tabs, etc. Since I quit those products and wear the goggles at night, it has been wonderful! I did get the red circles around my eye as well at first. My skin was becoming allergic to the rubber. (small swimming goggles) I came up with a crazy idea to place cloth bandage tape all around the rubber that touches my skin. I have no problems now. I loosen up the band as well and I've gotten used to it with a few little adjustments. It is SO convenient though. I keep them right next to the bed in the nightstand. When I'm really tired, I don't have to go through the whole patch my eye thing, I just plop them on and go to sleep. Just give it a try. What is there to loose. The bandages must be cloth and buy the very large ones and cut the center out and use the sticky tape part to cover the rubber. I know it sounds crazy but as crazy as it is, it works great.
Sounds like a plan Carol, I'll just have to wait since I'm 2 days post op gold weight removal & as you can geuss the whole eye area is pretty sensitive right now.
What's the brand name of the bandages you use ?
Thanks, I will surely give it a try, probly in a week or 2 when my eye heals...if this will help decrease amount of lubricant I need, WOW !!!!!!!
I think Chris just didn't like the pirate look. He wore it at night too and it came off center and bothered him. Now he just uses the drops and the gold weight does the rest.
As for the jump graft. We see movement ! After 4 months...we are so excited.
Hi Chrissmom - I read your post on the Chris update, but I'll say it again here, just cause I love saying
YEEEAAAAAAAHHHHH !!!!!!! Gives me hope to do the graft if I have to, so
Hi Carol: Just wanted to say: Early this morning I woke up & my eye was burning so bad, so I got out the swimming goggles
& it worked great !!!! Fell back asleep, woke up 3 hours later & there was moisture on the goggles, my eye felt great.
Unfortunately, my eye was real swollen lower lid (probably b/c I just had the surgery), the other eye was fine. Then the
burn started up about 1/2 hour later, so in with the lubricant. I will definitely use the goggles tonight, it was great,
(Now if I only had a swimming pool in my bedroom I'd have something great going here...)
Thanks again for the advice, Nancy
The swimming goggles are similar to the moisture chamber so I think it would work. I have a genetic cornea disease and I have bouts of severe tearing, scarring and dryness. I know how painful that can all be. If the cornea becomes centrally scarred, a transplant is necessary. So I quess we do what we have to do. Can't you get a moisture chamber from your hospital pharmacy or local pharmacy, if you have a script.? I think that's how Chris got one.
I'm so glad his doctor took care of his eye while in the hospital. I feel for Maureen's daughter. I wear special moisture contact lenses but my cornea is becomiing intolerant of the lens. I think the eye weight is a good idea.
I've heard of the external weight, that sounds like a good option for the interim By the way, I didn't know that it was recommended to change the weight every 5 years. I plan to ask Chris Dr. that question next time. Amazing what you learn on this site. ;)
Hi Chrissmom ( what IS your name !!) The fellow who works with Dr. Jewett did give me a script for the moisture chamber to take to ENT (you'd of thought they'd
have told me about this sooner !!!!), I'll get them when I go to get the stitches out this Thursday !!
WOW, so you've been dealing with this cornea mess for awhile, you know exactly what we all go through even more than us !!
Yes, the weight has to be changed; Dr. Jewett showed me a picture of someone who didn't get it removed after 5 years,
the gold was breaking through the lid, not a pretty picture.
Chris will probably have the weight removed for good once the 12/7 jump takes full hold.
(though, now that I think about it, my neurologist said the eye area may not always come back, I don't know if that means after
a nerve graft too.. hhmmmmm........)
I'm going to ask Dr. Jewett about the external weight for temporary use pending the platinum implant.
You're right, I've learned so much from so many on this site, it IS incredible !!!
Take care, Chrissmom, AKA ? Your son sounds like such a great guy.... If I was only 30 something years younger...
Sorry to hear that the gold weight didn't work for you, or should I say it worked but then caused you pain and problems. I was originally told I would need a gold weight but then my eye blinked and closed about 90% so they said it wasn't necessary or it wasn't worth going through it for what little it would do for me, but that was years ago so perhap I need to look into it and several other things. The most important thing I have learned from this site so far is that I have lots to learn. Even though I had my Facial Nerve Surgery 15 years ago I don't really know that much about it and of course almost nothing about AN. I use to try and find out new info. from the net and from my doctor and eye doctor but it always seemed to be a waste of time so I finally decided to do the best I could from what I learned on a day to day basis. I think I need to take a month off of work so I can read as many posts as possible to try and catch up with everyone and learn as much as I can.
I have often wondered what it would be like if I couldn't blink or close my eye as much as I can as I get frustrated when I put the ointment in then I blink and it ends up on my face, that means the eye is dry but the face is a mess. From what your saying I gather that the not blinking and closing makes the eye extremely dry and the ointment doesn't cover your eye because you don't blink. It looks like a case of your damned if you blink and your damned if you don't. I hope you find a way to alleviate the dryness and pain while you wait for the platinum weight to be put in as despite the frustration from the ointment I will take it anyday over the pain of dryness. I had a plug put in a few years ago and I couldn't put ointment in while it was being done, I was in EXTREME pain the rest of the day, to top it off it was a waste of time. One of the things I need to look into is help with the lower lid, I read somewhere on the board the other night that they can do something with that as well, perhaps the ointment would stay in better then.
May the time go quickly tell you have your new weight, look forward to hearing it was a success, Jill Marie
Hi Jill Marie: With the lower lid I had what's called a 'lateral tarsal strip', basically the doc tightened the lower lid with stitches to the outer corner. It makes all the difference i
in the world re:helping protect the cornea + appearance. When he removed the gold weight he was able to tighten it even more b/c you could still see a little
of the white under the pupil. Now it looks much better, even just 6 days post op (When he put the gold weight in I asked him NOT to pull too tight - I should
have kept my mouth shut & let him do what he does best; now it looks great !).
I can still blink b/c the swelling that's still in the upper lid post op is acting like a weight - once the sweling recedes I'll be in deep doodoo for awhile, so it will be
tape or Blinkeze external weight, moisture chamber at night until the platinum is put in.
Thank you for your words of support, take care, Nancy
I had to take out my bifocal lens so forgive me if I mispeall anything here. That eye needs a transplant and I'm not resdy yet. Anyway, Chris' doctor said yesterday that he must now start speech therapy to avoid synkkinesis. He mentioned a while back that the eye would be the last part to re-animate. I guess we'll cross that bridge later. He said we could get rid of the weight...maybe.
Hi RITA: I like that his doctor wants to start speech/facial therapy BEFORE synkenesis starts !
Yes, I think the weight coming out is dependent on the nerve working in the eye area...
The swelling is going down quickly in my eye, the burn is starting up as the blinking decreases..
Glad I'll be seeing the doc tomorrow ......
Wishing you healing for your eyes also, Nancy