Has anyone had a gold weight implanted recently?

[lauralynn]

I'm scheduled to have a gold weight implanted 7/8/09.  I've read the thread regarding the gold weight.  I'm just wondering if anyone has had one implanted recently and if you could give your opinion about it.  Does the vision on the AN side ever come back to normal?  Can the blurry vision be corrected w/ prescription glasses.  I see the eye surgeon next week but I wanted to ask my AN family first.

[Kaybo]

Lauralynn~

The last one I had put in was March of 2008 when i had my T3 surgery and it was a platinum chain.  I had to have it removed this Fall because it had "slipped" - I have had so many surgeries on my eye that that delicate skin/tissue is getting very touchy!  I LOVED my weights and how I didn't have near as many problems with it in.  I was already to go out and get new glasses, but in my case, that wouldn't have helped.  Even though the weight helped me tremendously, my eye still did not get enough consistent fluid.  While this did not affect the care (ex - not too dry - just put one drop in in the mornings and Refresh PM at night), my vision was not correctable.  I would see really clear for maybe 1/10 of a second so they couldn't get a proper reading.  My vision is MUCH better in that eye, but that is a whole 'nother story and a miracle in itself!  Let's hope that your weight works really well and you can see really well afterwards!!

K

[MsSerenity43]

Hello Lauralynn,

     I had the gold weight implanted in my eye several years ago, so I am not sure if my insight can help.  I had to have a larger weight implanted because my eye would not close with a smaller one.  I can tell you from experience that my eyesight never improved several years after surgery, but the ability to close my eyelid becomes easier and looks more natural every day.  I do wish you luck with your impending gold weight implant.

Dororthy

[4cm in Pacific Northwest]

Lauralyn,

You only just had your translab and baha surgery this past April… (now at 2 months post op?)

Was there indication that your facial nerve would not re-generate?

If the facial nerve probe indicated that you still have activity in the facial nerve I question as to why you must have eye weight “surgery�.

Has your ophthalmologists even suggested your try the “stick on� eye weight yet?
This is the PDF file on it (it is called the blink eze)
http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdf


I got mine (the stick-on kind in the PDF linked above) almost 2 months after surgery. Once I stuck it on –I could blink again and I no longer needed the lacrolube goop that was blinding me … now I have full function of my eye lid (know that when I came home from AN  surgery in 2007 I had NO eye movement), and today I no longer I wear the stick on eye weight (unless I am overly fatigued or it is overly arid) and do not even hardly need even eye drops- at all now. This took time and patience and I never had the eye surgery because I was patient with the stick on eye weight and the eventually the eyelid movement came back. I kept my cornea well hydrated and now have recovered full vision in that eye. That took about 18 months for 100% nerve regeneration in the eyelid. Know however that if I cry from a sappy movie (or chopping onions) that eye does not tear yet… I am still waiting.

I am reading your past posts and I am not seeing that you have stated that your facial paralysis is permanent. Have you any facial function, on the AN tumor removed side, at all?

In you June 16 post of http://anausa.org/forum/index.php?topic=9846.msg112296#msg112296 you wrote

  Apparently my nerves to my eye and around my eye are regenerating.  Anyways....now I have problems sleeping.  I think it's my eye that keeps me up.  I feel constant tingling 24/7.  When I do sleep, it's for an hour then up for 2. Has anyone else experience this?

Laura

I am guessing your nerves ARE regenerating and there is a chance this will come back for you- as it did for me.

Answering that question about your facial nerve activity would help us posties give you more input.

Know that there are different types of eye weights, sizes of eye weight and positioning of the weight in the eyelid. Our support group actually had this speaker come and talk to us about the pros and cons of each… including issues with the spring eye weight. You want to make sure you are only having a very experienced eye surgeon implant this as if this is not done correctly the weight can slip, wear through the skin etc and damage the eye.

Make sure you are dealing not with the ENT but an “ophthalmology� specialist only.

The “e� in ENT- does not stand for “eye�.

This is the doctor who presented to our Portland Oregon ANA support group.
Dr Eric Steele
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13700

My own eye care doctor, John Ng who works in the same Casey Eye Institute, advocated I avoid more surgery and try the stick-on eye weight as it is less evasive
This is he… and his credentials
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302
He was bang-on with this recommendation and this was very successful. So many fellow AN posties ask me,

 Ã¢â‚¬Å“Why did I not just get the stick on one? I had to have surgery to put it in and again surgery to take it out when eye function returned!â€?…

I ask the same question. “Why?â€?   

If you are interested in the stick on one- let me know. Mine was covered by my insurance (after we jumped through a few hoops). It was fiddly to learn how to use it- but then it became no more complicated than putting on contact lenses…

Before you have more surgery- really think this one out.

DHM

[lauralynn]

Hey DHM,
Thank you so much for all of the info!  I have been told by my neurologist that I have temporary facial paralysis (my neurologist said it can take up to 12 months to regain feeling).  My left side of my face is pretty much all numb, my eye never closes.  I have to put prescription (not over the counter ointment) in my eye 4 times a day otherwise my eye will get infected.  When I went to the opthamologist a few weeks ago, my eye looked horrible...red and swollen.  My neurologist recommended the gold weight.  I see my neurologist this coming Monday and I'm going to discuss this further with him.  I also made an appt. to see the opthamologist on Tuesday.  I want to discuss things with him also since my eye looks much better than it did when he initially saw it.  I do want to mention though that if I don't put the ointment in when my eye starts to feel irritated my eye can start to be a bit painful and uncomfortable.  Also, when I spend time outside, my eye gets really irritated.  I am definately going to research this.  I don't want to have the gold weight unless I need to.  I'm pretty much burnt out on doctors at this point.  Thank you again for all the info you gave.  I will keep you posted on what I decide to do.

Laura Lynn   

[Cheryl R]

Laura Lynn.       I am wondering if now you could put in the regular ointment and heavy drops many of us use and have used now that the redness is gone.     They can be put in whenever you want and keeps it hopefully from being dry.    It is maddening not knowing how long it will be till things start working again.                                I did not do the gold weight after my facial neuroma but I had had some paralysis for a while after my first surgery and knew how to keep the eye going and I did ok.          I would have went ahead with it if I never improved over time.                           Eye care is so important and I don't think it is told enough to patients.                                         Cheryl R

[nancyann]

Hi Laura Lynn:  I had my 3rd weight put in this past November.   I am very happy with it - I have chronic facial paralysis, & it helps me to close my eye when I hold the blink a few seconds.    My vision is constantly blurry on the AN side b/c I use Refresh PM ointment throughout the day (the drops don't work at all for me).
I have gotten use to the blurriness.  However my good eye's vision has worsened - just got new prescription  glasses.
You will love having a weight in.  & if you end up not needing it anymore (I hope, I hope), then it can be removed.
I also had a lateral canthal sling done to lift & tighten the lower lid.

Always good thoughts,  Nancy

[4cm in Pacific Northwest]

Hey DHM,
 I do want to mention though that if I don't put the ointment in when my eye starts to feel irritated my eye can start to be a bit painful and uncomfortable.  Also, when I spend time outside, my eye gets really irritated. 

I was in the exact same boat and actually even was on prescription eye drops for conjunctivitis...

That very afternoon I put the stick on eye weight on ... things improved. I wore the weight and used the eye drops... then I went to just the weight ... and here we are 18 months later I am fine, in my eye, now. I really think they should give these stick on weights out before hospital discharge- since I had to suffer, unnecessarily, for so long.

I am thinking that it would be less invasive to at least try the stick on one and see if it works for you... If, after time and giving it a chance, it does not …then get the implant. Know that if you get it implanted and eye-lid function returns ... it will be another surgery to get it out... and there will be scar tissue left.

I did NOT have surgery to tighten and lift the lower lid. We used 3m transpore tape to tape it up at the side (in the ANA eye care booklet) until the muscle tone returned. I changed the tape daily. If your surgeons are convinced that the paralysis on the face is temporary- why not use only temporary measures to cope- instead of more invasive permanent ones that will leave scars?



DHM

[nancyann]

That's a great point DHM re:  waiting on surgery (lower lid),  I wasn't thinking !   Glad you chimed in ! !

Always good thoughts,  Nancy

[lauralynn]

Hey DHM,

Thank you so much again for the info.  I did check out the website on it that you gave me.  Very interesting.  I'm definately going to mention it to my neurologist whom I see this coming Monday.  I am also going to mention it to my opthamologist (whom I see Tuesday) who neglected to mention to mention the stick on weight (of course).  I'd much rather do the stick on weight.  The funny thing is, I was originally supposed to have the gold weight implanted on June 3,2009 but I had to cancel due to having to go to the ER that day due to nerves around my eye starting regenerating and caused severe pain.  How long did you have the facial paralysis?

Laura

[4cm in Pacific Northwest]

  How long did you have the facial paralysis?

The first small millimeter of movement was at 5 months + post op ... I am at almost the 2 year benchmark and I have more facial movement than I did last month. I was told this can take anywhere from 3 months to 3 years... to return... so I am not sure what I am going to look like at the end of 3 years. Some posties have noted facial nerve regeneration even after the 3 years ... Each patient is so different.


I developed synkenisis ... so those areas of cross wiring I do not expect to go completely back to normal ... I am in neuro muscular facial retraining therapy ... only time and diligence to keep up with the therapy- will determine the final outcome.

[lauralynn]

Hi DHM,
When I was still in the hospital and my neurologist came in to see me and told me if my facial paralysis didn't improve w/in 6-8 months that he would be able to fix it by doing some procedure by taking a nerve from my tongue.  Have you heard of that?  Of course I don't want to have anymore procedures done.  I do facial exercises everyday.  Do you have any suggestions of any facial exercises?

Laura Lynn

[4cm in Pacific Northwest]

This is known as, I believe, the "nerve jump".

I have not needed this surgery. Perhaps others can pipe in on that one.

Be patient and see what movement comes back to your face... also know that much happened for me between month 6- 8 and more from 8 - 10 months.... as far as movement returning.

However I know that if the nerve jump is postponed too long it may not be as affective. I am not in the know of this -being that I never needed it. You may want to start a new thread under "facial issues" ... and maybe you will get more answers from others more versed than I on that one.

DHM