Author Topic: WOW I can see now! Temporary exterior eye weight update  (Read 4285 times)

4cm in Pacific Northwest

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WOW I can see now! Temporary exterior eye weight update
« on: October 03, 2007, 09:52:21 am »

I have been blinded for 6 weeks since my surgery in my AN side eye. I was mentally prepared to accept the one sided deafness, in the AN journey, however the temporary ‘vision loss’ due to the inability to blink in my facial palsy side eye- “blind sightedâ€? me off guard. (Sorry punny AN patient  humor there). My AN surgery team and my OHSU Casey Eye Institute  follow up team seem to be convinced that my eye will eventually work again – since it was working for 2 days post  surgery before it stopped blinking …and I got into major eye pain troubles.

Up until now I have had to use ewe gooey ointment plus a dark patch moisture chamber gizmo - taped to my face (arby dar – sporting the pirate look and Halloween is not quite here yet)

The “eye guy�
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11302
felt that it was too early to surgically insert a gold eye weight . He felt optimistic that eventually my eye might blink and close on its own … and why subject myself to more surgery. (I need more surgery “like I need another hole in the head� – sorry a little craniotomy humor there)



Yesterday I bought an external eye weight (ordered through my “eye guy�)
http://www.fci-ophthalmics.com/external_eyelid_weights.htm
It was $250.00 (Whether my insurance company reimburses me remains to be seen)

Within 24 hours of having the eyelid  “windshield wiperedâ€? away the gooey ointment because it can finally open and close - I CAN NOW SEE!    ;D(Not as clearly as before surgery but hey I am only at 6 weeks at post op with some swelling still). It is amazing how much my balance has improved now that I have 2 eyes to see out of. The weight is fiddly and my husband has to help me with sticking it on. I am worried it may fall off in a most inconvenient place and I will loose $250 down the drain or on  a country gravel road somewhere- never to be found again … BUT I THINK THIS WAS WORTH IT. (Hey I know some women who spend that much on their hair, nails and a pedicure) ::)

Thanks Jeff – for encouraging me to go get an eye weight.

Keep moving forward


“4�

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

yardtick

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #1 on: October 03, 2007, 10:18:59 am »
Great news,

This AN is a journey and than some.  I wonder what is going to happen to me when I have the facial nerve graft.  No date at the moment.  I see the Dr in Jan.  I saw the neurologist yesterday because of headaches.  She is so amazed my facial function is as good as it is considering the size of the tumour and the location.  I also saw my family dr yesterday and he's amazed that I'm handling things as well as I am.  The neurologist gave me topamax for headaches.  Can you believe weight loss is a side effect.  Bring it on!!!!! ;D

Good luck with the insurance claim for the eye weight.  The US and Canada need to take all of the good out of both systems and make a world class system that is fair and efficient.  The insurance and drug companies are making money hand over fist and really have no regard for human life.  Okay that's my rant for today.

Enjoyed your humour.  I have to laugh.....it just makes this thing so much more bearable.

Anne Marie

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jim Scott

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #2 on: October 03, 2007, 11:57:50 am »
4:

I'm pleased to learn that you've found a solution to your eye problem with the gold eye weight.   Being able to see clearly is always an important part of regaining balance, at least, it was for me.  I would assume that your medical insurance would pay for it, as it seems to be medically necessary and hardly 'cosmetic'.  However, one can never be sure when it comes to insurance company policy and decisions, so one cannot be too optimistic in these cases.  I doubt that the weight will ever simply fall out, by itself.  Many post-op AN patients have a similar problem (eye not blinking) and have the gold weight inserted.  Most do very well with it.  The necessity for having the gold weight should be temporary but 'temporary' is often a relative term when it comes to AN 'issues'.  In any case, this is certainly another step forward for you and one that should bring you closer to a full recovery, sooner. Way to go!  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Joef

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #3 on: October 03, 2007, 01:07:29 pm »
If it comes down to getting surgery .. dont sweat it .. it was nothing .. and after a couple weeks ... I love it.... I should of done it long ago .. but like you I waited .. and waited too too long to get it done (I did not want another surgery!) ..
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

nancyann

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #4 on: October 04, 2007, 08:41:19 am »
Hi 4:  I remember reading somewhere someone was using the external weight & it fell off while she was out & about - so, take care of that expensive piece of gold !!!
Always good thoughts,  Nancy
ps:  I'll keep the good thoughts that your 'blink' comes back & you won't need a 'permanent' weight - but I echo Joef: it really IS a 'piece' of cake to have the implant, & it can be removed in the future if all movement returns - take care
« Last Edit: October 04, 2007, 12:24:34 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Samantha n Adrian

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #5 on: October 04, 2007, 05:56:22 pm »
Hi 4,

I also have that “stick onâ€? eye lid weight.  I personally don’t like it because it doesn’t stay put.  Also……$250…YIKES!  I have the EXACT same product and I paid $82 including shipping to my house.  I would question that.

I also was told that I probably should wait before opting for eye surgery.  It’s not fun dealing with an eye that doesn’t work properly, but as long as I keep it “gooped upâ€? (a technical term by the way) it’s fine.  I just have to wipe it clean before I drive.

Anywho…..good luck with the temp weight.  Hope the eye starts working on its own soon!

Adrian
Age 35/ 4cm AN right side, Transpetrosal aproach, 9/6/07
Dr. Loren Bartels - Otolaryngology & partner Dr. Christopher Danner
Dr. Harry van Loveren - Neurosurgeon & partner Dr. Levine
Dr. David Samuels - Anesthesiologist
Tampa General Hopital, Tampa FL
These guys re-assembled Humpty Dumpty!

4cm in Pacific Northwest

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #6 on: October 04, 2007, 06:38:33 pm »
Quoting Adrian

“Also……$250…YIKES!  I have the EXACT same product and I paid $82 including shipping to my house.â€?

No Kidding. That is the American pharmaceutically driven healthcare system for you. My husband and I thought we could just have bought false eye lashes. Cut the lashes off and stuck a fishing-line weight on with some glue.  They know patients desperately want to see … Only $82 huh? Well I be…

AN forum buyers beware!

4

P.S. Day 2 with eyesight and I am pretty happy with it though. It stayed on all through the night and today.
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #7 on: October 04, 2007, 08:09:50 pm »
Quoting Adrian

“I also have that “stick onâ€? eye lid weight.  I personally don’t like it because it doesn’t stay putâ€?

From this other thread
http://anausa.org/forum/index.php?topic=5216.msg47028#msg47028

When I was in the hospital all the ‘kids’ in white coats labeled “Neurotology dept� came by and said,
 Ã¢â‚¬Å“You should tape the eye down.â€?
Then the other group of ‘kids’ in white coats labeled neurosurgery said,
 Ã¢â‚¬Å“Uh oh you not have tape there do you? You can ruin the cornea doing THAT!â€?

(They were all very nice smart kids mind you)
 In my medicated state I would wake up one morning with tape (wondering how it got there) … and some nice young kid hovering over me saying,
“You should not have that tape on there.�
 The Neurotology and Neurosurgery departments obviously had different ideas… were using different textbooks and were definitely NOT on the same page. (At least in my atypical AN case)

“E� in ENT, I have discovered does not stand for “eye�.

Then came in the eye bandage bubble. (Optometry dept supported this idea too) Both teams thought his was THE best solution… I was sent home for the plane ride-glued to this gizmo and as Adrian says “gooped up�. (This bubble was later referred to by optometrist, here home in Oregon, as the ‘germ incubator’ when I went for treatment of an eye infection. She said, “Uh we don’t to that anymore… that is old school.�)

So there were all my specialists (all I actually quite like and respect- still) … however not all on the same page… and definitely not the same textbook. (or school of thought-for that matter)

Talk about confusing the patient! ::) ::)

SO here is MY take from the “Patient Departmentâ€?  ;D(my white lab coat is covered in paint splotches, charcoal, lumps of clay … so I am not a medical expert by any means)

Tape: should only be done on the side of the eye to prevent drooping of “the bags� to help keep the fluid in. Taping the eye shut CAN damage the cornea.

The eye bubble bandage
The eye bubble bandage IS a germ incubator (first hand conjunctivitis experience here) but it works extremely well for temporary use to keep shampoo and soap out of the eyes while showering. First use it will really stick to the face. After use peel off and air dry. As the glue wears out use “3M tranpore tape� to tape it on. Just think of it as a shower cap for the eye.

Eye Goop (Adrian’s great technical word)
One AN’er told me to by the ‘Genteal’ brand as it is way cheaper. (True it is) So I bought the whole line… to discover I have an allergy to the preservative they put in it. (Invest in stocks in the pharmaceutical market I advise– they are making a killing off of us)

Cleaning the eye

I was told to buy these things (Lid Scrub Pre-Moistened Pads)
 http://www.ocusoft.com/PatientCat/lidscrub.htm

(Gee I may need to install more medicine cabinets with all the “stuff� from this AN journey… again apparently the pharmaceuticals stock market is THE place to invest in the USA). This is to clean your eyelashes from all the sleep you get in the morning (known by my kids as “fly poops�) because you are not blinking you need to keep your eye lashes clean.

Can’t get your temporary eye weight to stick? (This is devoted to Adrian ;))
Clean your eyelid with the lid scrub pad and make sure there is no ointment (or other oily filmed stuff) on your eyelid. Forget placing this eye weight on yourself. Have someone place it for you – then you press it gently to stick to your eyelid. If you plan to wear it in the shower wear the eye bubble- so if it pops of it stays in the bubble and you money does not go down the drain. Worked for me this morning and my eye weight has been on 24 hours now … Gosh I hope it is not SO stuck it will not peel off when I want it to.

I’ll keep you posted.

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

nancyann

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #8 on: October 04, 2007, 08:39:35 pm »
Hey 4 - sorry to hear about your bout with conjunctivitis from 'the bubble'   I use it every night for the moisture buildup, aka 'germ incubator'.   Guess  I've been lucky 'cause I haven't had any eye infection yet.  I had read it shouldn't be kept on for more than 12 hours at a time.    How long were you leaving it on for?  I use the same one for 2 nights in a row, after that I use a new one - mainly because the tape doesn't stick after 2 nights (sweat from the hot flashes I get stop the adhesion).   I'm wondering how long my luck will hold out!    Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

4cm in Pacific Northwest

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #9 on: October 04, 2007, 09:31:46 pm »
Nancy,

Changed the bubble every 12 hours... however I did not know about the eyelid srub pads then

However I am glad the bubble is working for you at night.

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #10 on: February 29, 2008, 11:25:03 am »
Yes this is months later a reply ... but I think follow-up is important so people know the outcome of a problem in a thread… and if there were good solutions or not.

I just want people to know that this temporary eye weight was a success for me. I hardly need it now and actually had one full successful week with out it. The nice thing with this temporary model is I can stick it on as I need it – or have the option to have no eye weight at all.

This is a good option for patients who have physicians tell them that they anticipate improvement. I was able to get almost full eyelid function back by 6 months- however each patient is going to be different. I do also have some regressive days …

Keep moving forward.

4


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Jim Scott

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Re: WOW I can see now! Temporary exterior eye weight update
« Reply #11 on: February 29, 2008, 02:50:44 pm »
Thanks for the update - and, congratulations! 

We appreciate those who not only relate their problems but take the time to inform us when the problem is addressed and the situation improves, as yours has. 

We all like to read AN-related good news and positive outcomes, so your story is most welcome. :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

 


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