Don,
Taping the eye shut is considered to be
very old school... stitching it shut even more so. The taping can scratch and permanently damage the cornea of the eye if the tape slips in the night. (Not to mention it hurts like heck when you take it off and it takes your eyelashes with it- Ouch!)
Although being on a small island can be beautiful and romantic I know, from experience, that it can also be insular (especially
socially) - even within the medical community… as they live in a time warp just by having a limited number of colleagues to confer with. This same thing can happen up north - in remote communities of Canada and Alaska… making medical help often hard to obtain. Thus the internet and discussion forums have been very helpful to people in remote and/or isolated communities… in finding help or just trying to diagnose their weird symptoms. I bet if you did a survey of the entire island you will probably find you are
the only one who had an acoustic neuroma… but know that you do not have to be alone during this long recovery process.
Did they actually advocate you wear swim goggles post surgery? Oy ya ya! I cannot imagine the discomfort of the goggle elastic around the head- post craniotomy… this seems so absurd.
There are lots of things that can be done for your eye … there are many technological and medical advances and an AN patient need not suffer.
Sometimes I get blurred vision from the dryness – and I am assured I have no scar tissue.
Has anyone suggested to you to get an eye weight? These can be surgically implanted (done in the office with local anesthesia- like being at the dentist type of day surgery) or you can get a temporary eye weight as you wait for the facial nerve to heal and re-grow. It is the lack of function of the facial nerve that causes the dryness. The key is the cornea must be kept hydrated during the recovery stage until blinking or natural tears and hydration return. (It could be worse – you could be living in
arid Arizona
)
When did you have you surgery and follow-up radiation?
What # would you rate yourself on the House Brackmann Facial nerve scale?
Here is the link if you are not sure what the scale is all about
http://www.dundee.ac.uk/bells/index_files/hbscale.htm“If� you have been told that you have permanent facial paralysis then the surgically implanted weight is the best option.
Once I got the eye weight I did not need the blinding goopy ointment anymore- just the occasional eye drop or celluvisc… Now I don’t always need the eye weight. However I had a stick-on “temporary� eye weight so I can chose to have the weight on- or not (unlike those with the surgical implant.) This may not work if you are sweaty in the tropical climate of Hawaii… especially with tropical rain or going in and out of the water. When I shower I have to cover the eye weight with a bubble – for fear that it will come un-stuck and wash down the drain.
Have you or your ophthalmologist ever explored the eye weight option?Being that you live within the USA why not just pay the $3.00 and order this book
Eye Care After Acoustic Neuroma Surgery (AN6)
Details on caring for eye problems caused by facial weakness following acoustic neuroma treatment. Includes information on corrective procedures and patient-maintained eye care. Updated: June 2007
Price: $3.00(There are a few patients,
and ophthalmologists, that feel that the advocating of
taping the eye shut 
needs to be reviewed- in this publication … but otherwise the rest of the booklet offers good sound advice)
Here is the link to the publication available through the ANA.
https://secure.baxinternet.com/~anausa/for_sale.htmlI ordered all the other books too and these have been really helpful.
Also know that
there is a support group in Oahuhttp://www.anausa.org/local_groups.html… How difficult is it for you to get to the other islands without too much expense? Last time I was in Hawaii I remember there was an island-hoping sort of pass available for locals -through Hawaii airlines.
I have spoken with many Hawaiian families who have their kids at Pacific University - here in Oregon. Although the kids are often homesick - they do talk about how frustrating it can be if you live on one of the smaller islands and you need high specialized medical assistance. It is amazing how many people there fly here to “the Mainland�- to get assistance. I have often dreamed about retiring to Hawaii (I love the spirit of the people there) but I am aware that in older age the “lack of� medical facilities and specialized help can be an issue. Hopefully you have caring family and friends on your island… Here (with the ANA forum family) we can hopefully try to also give you support -simply by being experienced AN tumor patients who can empathize. You will also find an international group of people here with a wealth of information -as to where to get resources.
Sometimes printing off information from provided internet links (such as on the eye weight etc) - and taking these to your doctor can be helpful. Some doctors however get their egos hurt and feel you are questioning their competence – so you will have to be the best judge.
Keep moving forward.
4
P.S. This is the temporary eye weight I used.
http://www.medcompare.com/details/34993/Blinkeze-External-Lid-Weights.html I paid $220 for it and have
yet to get the reimbursement from our insurance company.
Another postie, Adrian, got his or about $89 – so -
consumer beware.
This was our old post on that
http://anausa.org/forum/index.php?topic=5211.0
