Gold Weight Removal

[nancyann]

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

[jerseygirl]

Nancyann,

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!

           Eve

[Denise]

Nancy,
Hang in there! You can do it! Just think,  six weeks is better than six months.   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! 
Denise

[nancyann]

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.

[redgrl]

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!

[nancyann]

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).

[chrissmom]

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.

[nancyann]

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 ?

[palms0@hotmail.com]

Hi Nancyann
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
meb

[MCLARKE46319]

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

[palms0@hotmail.com]

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.
meb

[nancyann]

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....

[Jeanlea]

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. 

Jean

[palms0@hotmail.com]

Hi Nancyann
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
meb

[nancyann]

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).