Author Topic: Eye damage  (Read 5901 times)

Don

  • Jr. Member
  • **
  • Posts: 59
Eye damage
« on: February 28, 2008, 12:54:40 pm »
 Following my operation to remove my tumor I was seen by an opthamoligist who did a slit lamp on me and put some goop im my eye and patched it? I am NO stranger to eye injuries I was a sheet metal mechanic in the Navy for 21 years and also had my retina detached in the left eye during my stay from abuse at the re-hab gulag, so I was puzzled to say the least . Well they told me to put the cream in and keep the eye taped up? So I asked my wife if my eye was open at night and she said no, but it kept getting worse and at one point I was wearing swim goggles to sleep in and the goop was melting the plastic? Finally the pain got so bad I wanted them to remove the eye and they were trying to get me to fly to Honolulu to get the eyelid sewn shut? Finally my GP here gave me a script for some cocaine eye drops which were magic, ALWAYS I repeat always get 2nd opinions if possible as after months of extreme pain I went to a new eye clinic and they ordered a topographic scan of my left eye and just the tip of the cornea is tore up? If my eye was open the whole eye would dry out so this leads me to believe me left eye was not patched properly and was ground into the patch for 9 hours and damaged but they wont admit it in fact there is no record of the Opthamologists examination the next day and I know who the guy is as he re-attached my retina less than a year before, be very careful as my life has been impacted severely by this event and since I live where I do I cant get the time of day as of now I am trying to find if it is possible to remove the scar tissue which blurs my vision in that eye and causes it irritation 24/7 

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: Eye damage
« Reply #1 on: February 28, 2008, 04:21:43 pm »
Geez louise - that pain is horrendous!   I had a tear on my cornea (accidently happened during a recent surgery) - thank goodness they took me to
the Opthalmology dept. the next day & was given medicine that cleared it right up.   Whew, is it painful though.
I don't know if scar tissue on the cornea can be removed.  Do you have an opthalmologist you can ask?

The lubricant I use every 2-3 hours keeps my vision blurry....
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
2.4 Gm. Platinum chain 2017
right facial paralysis

Don

  • Jr. Member
  • **
  • Posts: 59
Re: Eye damage
« Reply #2 on: February 28, 2008, 04:31:06 pm »
 Hi Nancy and you are right it is the worst kind of pain and you cant scratch it or nothing feels like someone stuck one of them car cigarette lighters in your eye socket but hey Im tougher than woodpecker lips an just figger its all part of the plan to pay back for all the fun I had my first 47 years I am presently shopping eyeball doctors with mixed results still not sure if it can be done time will tell I suppose and now that the pain is gone its not that bad especially since I purchased a Kindle, Amazons new electronic reading device? That thing you can adjust the font size in your reading materials what adifference it has made in my life as I now have no near vision in my left eye and it goops up? If you can afford one get it anybody who loves to read and has eye problems will love it!

chrissmom

  • Full Member
  • ***
  • Posts: 160
Re: Eye damage
« Reply #3 on: February 28, 2008, 07:12:11 pm »
Wow, It sure is painful, I have a cornea disease in both eyes called Kerataconus. I know exactly what you mean.    I have some scar tissue (from the disease).  It cannot be removed, the only cure is a cornea transplant.

One good thing that I know is that if the cornea is slightly injured, it does seem to have a remarkable ability to come back.  Chris had just been thru a terrible bout of pain because his cornea began to dry out due to the facial paralysis.  The Ophthamologist showed me his cornea as revealed thru the slit lamp and I could see the area . It was shaped like a football, rather large and looked like sand paper had rubbed across it.  He had the surgery on Feb. 1 to bring up the lower eyelid.  His eye has healed.

Don

  • Jr. Member
  • **
  • Posts: 59
Re: Eye damage
« Reply #4 on: February 29, 2008, 12:14:17 am »
 Boy that has to be rough being a young fella going through that I was ready to have them remove the eye as I would rather be without limited vision than that pain? Th one opthamologist I trust says a transplant might be the same as they are to restore vision not to improve it I gather so I keep looking I guess. The scarring is in a perfect circle at the tip of the eye this is why I know it wasnt caused by my eye being open my neuro opthamologist showed me a simple test someone can do for you, close your eyes and then have a person put a finger tip on your eyelids and try to hold them closed as you open them this will tell you if one side is weaker.
 Mine are both equal.

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Eye damage
« Reply #5 on: February 29, 2008, 11:42:38 am »
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.html

I ordered all the other books too and these have been really helpful.

Also know that there is a support group in Oahu
http://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

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!

Don

  • Jr. Member
  • **
  • Posts: 59
Re: Eye damage
« Reply #6 on: February 29, 2008, 12:34:29 pm »
 $cm I have no idea of the facial nerve thingy and I DO not have eyelid problems as this is always assumed just like aneurysm survivors are supposed to have seizures and some of the meds cause vision problems and also gave me kidney stones and to date I have NEVER had a seizure and it took me about 4 years to convince them and I no longer take any sort of anti seizure drugs I am fortunate that in Honolulu I was seen by one of the best neuro opthamologists in the country and he did the finger tip test so there is nothing wrong with my eyelid muscles, so no weight is needed more like a tooth pick to prop it open as I keep it closed or wear an eye patch while reading as the difference in vision is extremely annoying. They started making me wear the swim goggles after I returned home I tried the tape but it wouldnt sick the goop melted the rubber strap if you could only see the picture of the topographic scan of my left eye it tells the story as the abrasion is in a perfect circle on the tip of the cornea, this isnt science imagine they got me face down for 9 hours grubbing in th back of my skull who knows if my eye opened up? I was extermaly curious why I was being examined by an opthamoloigist the next morning and his exam isnt listed in my records but as I said I know the guy and also know th exam he was doing and the drill when you apply ointment and pacth the eye this is a result of an injury not to prevent the eye from opening? Gimme a break here if I could find a lawyer I would own that hospital do you know that the surgical transcript of my tumor operation is  an operation performed on a female on the opposite side no wonder the VA took so long trying to figure out my case and Im not making it up as I have made copies.
 I would much rather be bust up in a place like this than a big city any day hands down as I would have hurt someone by now if they try to scam me or push me around Im not built for it and appreciate the fact that when Im in the terminal awaiting my flight my fellow passengers are all friends, Maui is getting more services I have a really good doctor there who has helped me sadly the only airline that services our island are crooks we just got a new one and I will fly them on the 8th for the first time they charge less than 1/3 o f what the current crooks charge and since I require assistance a round trip for the wife and I on a 15 minute plane ride was close to $400 they have a lisence to steal Im happy Maui is getting more services as it is only $40 a round trip on the ferry and the DAV has a van that picks up vets at the harbor so its getting better.