ANA Discussion Forum

Post-Treatment => Eye Issues => Topic started by: badyellowvette on March 01, 2013, 02:27:49 pm

Title: My 28 year battle with dry eye.
Post by: badyellowvette on March 01, 2013, 02:27:49 pm
Starting in 1985 with my first AN and a Tarsarophy. I have never gotten relief from my dry eye.
When I had a recurrence of my AN in 1993 is when they removed the Tarsarophy and add a gold weight.
Still had trouble with closing and irritation. To make everything worst I work outside.
Fast forward to 2001 I again started  to seek help for my problem. I was referred to Pittsburgh Oculoplastic.
My first operation in 2001 with them resulted in moving the weight that had been installed in 1993. They had no way of knowing that the first weight was 1.6g and didn't have a heavier one on hand. Moving it lower in my lid helped but still did not close my eye.
In 2003 that weight was replaced with a thin 1.6g lower in my lid without not much help.
In 2003 the 1.6g was replaced with a 1.8g. The problem with that weight was I could feel it on my eyeball, very irritating.
Three months later it had to come out. It was replaced with a 2.2g that was replaced higher in my lid. That weight never worked very well for closing and recently has left my eye very irritated.
 
This all brings me to today. This Monday Pittsburgh Oculoplastic add another weight a 0.8g above the 2.2g that is already in my lid. They also tightened the tendon in my lower eyelid. With all the swelling I don't know yet if all this is going to help or not. Now I have a total of 3.0g of gold weight in my lid.
I was just wondering who else has had this much trouble with their eyelid and what has been done about it.
Also it has been said by my current Doctors that the gold weight should have been but in as soon as my first AN operation. The muscles in my upper lid had to much time before the gold weight was put in to get stronger pulling my lid up. So if there is any question as to if you have a gold weight or not I hope my story help people decide the best option for them.
Looking back my eyelid performed best with the 1.8g weight lower in my lid. I could not see my lid closing slower then the other side at that time and was closing completely, but he irritation was unbearable.
Title: Re: My 28 year battle with dry eye.
Post by: MNTim on March 01, 2013, 04:52:06 pm
You have been through a lot. Hopefully they have honed their technique over the 10+ years and they got it right this time.

Best of luck.
MnTim
Title: Re: My 28 year battle with dry eye.
Post by: nancyann on March 04, 2013, 06:35:32 pm
That IS alot of weight. Have you had a canthal lateral sling? This procedure is the only one that's kept my lower lid from drooping, had it done a few years ago.
I have a platinum weight (allergic to the gold). If you have anymore problems, maybe the doc can use platinum, since it's a heavier metal it would be less bulky, just a thought...
Don't know if you've read about the scleral lens - I love it & it will help protect your cornea.  Wishing you all the best...
Always good thoughts, Nancy
Title: Re: My 28 year battle with dry eye.
Post by: Dena King on March 14, 2013, 09:04:15 am
I know exactly what you have been going through, except I never had a gold weight.  Never really felt the odds were in my favor for that.  I have been fighting dry eye since 1981 when I lost my hearing, and facial nerves due to a lime sized AN.  Had a tarasophy almost immediately which has helped some, but never relief.  It is still a continuous battle, and my cornea has taken alot of abuse so much as it has really "thinned out"  I had a infection so bad last summer it has left my cornea scarred.

Fast forward to receiving my schleral lens.  It has been fabulous and I recommend you look at my and others links regarding getting one.  It has made all the difference in the world for me.  I still wear patches or goggles at night with lacrilube ointment, and celluvisc drops during the day as needed, but it is incredible how much better it feels.  I would write all about it, but would be much easier if you could look up my link called "schleral lens".

Best of luck to you!
Dena
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on March 18, 2013, 12:22:37 pm
Well it's been a few weeks since my last eyelid surgery and I am a little disappointed.  My eye will now close all the way but it does not close when blinking. I am trying to get in the habit of making it close when blinking but that is a hard habit to get into.  My eye is still very irritated by the end of the day.
Just talked to the Doctor today and he doesn't sound like he wants to try anything else right now. Says he has never seen a total of 3 grams in an eyelid before and don't want to add anymore.

My health just increased to $795/month so I am also changing Insurance this month so a preexisting conditions will not be covered for a year. Looks like I am stuck with what I got for now.
Title: Re: My 28 year battle with dry eye.
Post by: saralynn143 on March 19, 2013, 08:54:49 am
I'm so sorry you are disappointed. My ophthalmologist told me up front that the purpose of the weight was to keep my eye closed at night and to help with blinking, but would not make me blink correctly. I think the springs work better for that, but they have a significant rate of complications such as extrusion.

I cope with dryness by using Refresh PM gel 24/7. It makes my vision blurry but I've learned to live with it.
Title: Re: My 28 year battle with dry eye.
Post by: susanisselhard on March 29, 2013, 11:44:37 am
Thank you so much for your history....just knowing I'm not alone, from reading all these posts, is comforting.  Had my first AN surgery in 1991; regrowth, 2d surgery 1998, with resulting facial nerve damage.  Had gold weight in left lid then, but it was removed soon after (don't know why).  Steadily worsening dry eye since; have tried punctal plugs (they fall out, and now I seem to have scarring which prevents re-insertion).  I've used lots of drops, gels and ointments....and I tape my eye shut every night, which helps.  Now, it's out of control, so it's back to the surgeon to see what's available.   I'll post again with more on this journey. 
Title: Re: My 28 year battle with dry eye.
Post by: Dena King on March 30, 2013, 06:55:20 am
Susan,
Your history sounds very very similar to my story.  I really wish you would take a look at all my and others postings regarding the schleral lens.  I am telling you my cornea is severely scarred from past infections, exposure, etc.  there is nothing that can be done for my scarring other than a cornea transplant which in my mind would be just about the end of my rope.

Although the schleral lens cannot correct the scarring already there, it will prevent future scarring, etc. 

Basically the lens is larger than a regular contact.  It is gas permeable and slightly bowed a solution is Putin the lens before insertion that basically creates "it own fish bowl" affect.  When I put the lens in I can feel instant "aww" relief!  I have been fighting since 1981 with these eye issues and this has by far been the best thing ever! 

I switch off at night between goggles or bubble patches that I get all from thedryeyeshop.com.

You cannot wear schleral lens at night.

Happy Easter everyone!
Title: Re: My 28 year battle with dry eye.
Post by: nancyann on March 30, 2013, 08:08:49 am
Hi Susan: I saw Dena's & Jill Marie's subject of scleral lens & it is the BEST!
It has given me a freedom I didn't have before - no more putting in lubricant every 1-2 hours. I thank Dena for trailblazing this amazing lens.
Title: Re: My 28 year battle with dry eye.
Post by: ginsue on March 30, 2013, 01:59:14 pm
@ BadYellowVette I didn't have my gold wight until 7 years after my AN surgery.  I had mine put in by a plastic surgeon, not sure the weight.  He put it in while he did some other work to my face.  When I recovered and the swelling went down in my face he decided that it was too high.  He chose to move it while I was awake and he could see how it worked before closing the lid up, no guess work and it was a perfect placement.  As to your new insurance, they should still cover even though it is preexisting because it may cost them more in the long run say if they had to repace your cornea or you go blind so it is preventative.  When I married 5 years after my AN surgery I was put on my husbands insurance and they payed for my facial reconstruction for that particular reason.  Talk to your doctor about writing your insurance compay a letter describing his prevention of further damage, it may work.  I also have read Dena's thread and I now have an appointment the end on April to be fitted for a scleral lens. With you working outside it sure sounds like it could be the answer to you problem.
Title: Re: My 28 year battle with dry eye.
Post by: susanisselhard on March 31, 2013, 05:17:58 pm
Thanks Dena and Nancy Ann--I'd never heard about the scleral lens--wish one of the opthamologists/optometrists I've seen had even mentioned it......Will be major topic of discussion when I see surgeon tomorrow.
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on April 03, 2013, 03:37:45 pm
Thanks for the info on the scleral lens. I will have to talk the my eye Doctor next time I see him (local) The plastic surgeon that put weights in my eye is 3 hours away so I don't see him too often.
Title: Re: My 28 year battle with dry eye.
Post by: ginsue on April 03, 2013, 05:13:35 pm
Glad that you found this thread BadYellowVette.  There is a lot of good info here!
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on April 04, 2013, 12:05:42 am
Sadly not many opthamologists/optometrists know about the scleral lens or if they do they don't see a need for it for there patients therefore don't research it enough.  I/we could get upset over the fact that someone could have helped us a good 5 or more years ago but I choose to be happy that I got the relief now rather then thinking what could have been or asking my previous doctors why they didn't help me when I asked them if there was anything they could possibly do to help me or tell me who to talk to about my severe dry eye.  I wasn't referred to the doctor that helped me until I told my eye doctor about the scleral lens that Dena posted about,  that's when he sent my records to a contact specialist, told me not to bother making an appointment as he didn't think she could help me.  Told me to let her see my records then make an appointment on the off chance she could help. 

Easter Sunday we went hiking, it was great, didn't have to put ointment in my eye all the time, it was really warm and I was sweating but didn't have ointment running down my face like I usually do.  While lying in bed that night I was thinking back on how nice it was to have the lens, then it hit me, didn't take the lens out, it feels so great I forgot I had it in. 

Good luck to all that go in search of relief via the scleral lens, keep asking doctors tell you get one that can help you! Jill :D
Title: Re: My 28 year battle with dry eye.
Post by: susanisselhard on April 07, 2013, 06:54:54 pm
Well, saw the opthalmologist who specializes in oculoplastics, results fairly positive, for now.  His take on scleral lens for me:  not at this point.  Says I have dryness but no scarring, good closure although slow and incomplete.  Told me that the Rx I'm using for glaucoma is irritating to the cornea (first I'd heard of it).  Suggested that I stop using the medication in the dry eye, and also do a specific blink exercise to strengthen eyelid.  5 times every hour!  We'll see how these two things work, then consider gold weight if necessary to allow dryness to heal.  So that's what I'm doing now. 
Although I did try facial physical therapy, I'd never had eyelid exercises suggested.  I'll post about the results once I've done them for a month and spoken to doctor again.
Title: Re: My 28 year battle with dry eye.
Post by: nancyann on April 10, 2013, 06:51:24 pm
Jill: Isn't this lens amazing??  I could never take a 'short nap' before because my dry eye would start bothering me. The other day (weekend), I fell asleep for about an hour, woke up & couldn't believe I didn't have burning eye pain! It's the little things I am so grateful for!
Thank you thank you for the scleral lens!!
The 'new' gift that keeps on giving in the BEST ways!
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on April 11, 2013, 12:35:12 am
Nancyann,

I totally agree, the lens is amazing and the little things mean so much more than one could imagine.  Every time I see my eye doctor I tell her a little bit more about how much it has changed my life.  Took the dogs for a walk this afternoon, it was so windy that I could barely walk, yet I didn't have to put eye ointment in tell we where done with the walk, pre lens I would have put ointment in like crazy or more likely would have skipped the walk which the dogs nor I would have been happy about.  I too have taken a nap with the lens in and didn't have any problems with my eye when I woke up.  Can't wait to take a nice long (10 mile) bike ride with my Hubby and not have to stop every mile to put in more eye ointment then pay dearly at the end of the day for being out in the elements. 

Susan, from what I have read you really need to take a second look at the lens.  Just because your doctor says you don't have scarring it doesn't mean that the lens wouldn't help you.  I'm not sure why your doctor doesn't think you need it, if it's because of the cost please keep in mind that my lens only cost me $250, not sure at this point how long it will last, hopefully 4 months.  My Insurance said it wouldn't pay for it, my eye doctor filed an appeal today and hopefully they will pay for it.  Will let you know.  You will use a lot less drops and ointment with the lens and the comfort part is priceless.   ;)
Title: Re: My 28 year battle with dry eye.
Post by: susanisselhard on April 12, 2013, 03:29:53 pm
Thanks, Jill Marie....I won't roll over on the scleral lens issue....if nothing else, this AN journey (of 22 years) has reinforced for me the value of being my own strong advocate.  More will be revealed, I'm certain.
Title: Re: My 28 year battle with dry eye.
Post by: nancyann on April 12, 2013, 07:12:42 pm
WOW Jill: my lens cost me $1,250.!! but if it cost $10, 000 I still would have paid it, knowing how much it has changed my life.
Wonder why the cost discrepancy? Are you in the US??
Really windy day today, & I LOVED it!! Face in the wind, & no need for lubricant!  Oh happy day!
Title: Re: My 28 year battle with dry eye.
Post by: saralynn143 on April 12, 2013, 07:52:44 pm
Jill Marie, why would your lens last only 4 months? That does not seem very long.
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on April 12, 2013, 10:47:33 pm
Susan,  So glad to hear you won't give up on looking into the scleral lens, unless I'm missing something about what you are dealing with it seems like it would really benefit you.   Yes, we must keep doing what we can for ourselves, I've always found that I know more about my issues then the eye doctors do.  :)

Nancyann,  I live in Spokane, WA.  My lens cost less because my eye doctor says it's not actually a scleral lens, she says the scleral lens is bigger, covering more of the eye and needs special measurements to be fitted for it.  She wanted to try the lens I have and would send me to someone else if need be for the scleral lens.  As I've mentioned before this one is great, forget I have it in my eye so see no reason to try anything else.  I too would have paid $10,000 for it because of how much better my life is because of it.  I believe I've also mentioned that this past year I spent $4400 on eye ointment alone not to mention buying boxes and boxes of kleenex and eye pads, etc.  I didn't use to pay so much for the ointment but the last couple of years my eye got worse and I had to use a lot more to try and keep the pain at bay.   I'm so very happy that you are enjoying it as well!  Who would have thought this time last year that something so great was headed our way! 8)

Saralynn,  The lens lasting 4 months is a conservative estimate.  My eye doctor has never had anyone use the lens I have with ointment so she thinks it won't last as long as normal.  We will just have to wait and see how it goes, as I've said before it is way cheaper than the ointment I was using so I'm not worried about it.  Hopefully my Insurance pays for it which will make it even better.  I'm also going to get a back up lens that will cost about $50, that way if I'm on vacation and loose my lens I'll be ok tell I get back home.  Don't you have an appointment this month to see about getting a lens for yourself?  ;)


Title: Re: My 28 year battle with dry eye.
Post by: saralynn143 on April 13, 2013, 07:01:49 am
I have sent a message to my ophthalmologist asking whether he can help me with a scleral lens. I also called Valley Contax for a referral in my area in case he is not. Hopefully the wheels are in motion . . .
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on April 13, 2013, 07:52:55 am
My eye is not getting any better. Some days really, really bad, totally red I will have to hold it closed so I can keep my other eye open.
Called surgeon, office says he has to see me and I knew that would be the answer. Don't know if I can drive the 3 1/2 hours to see him no one else to take me. I asked about the scleral lens and the nurse said the Doctor said I was not candidate for the lens with no explanation why.
Thinking I will have to see my local eye Doctor first who I also asked about the scleral lens but he never fitted one and had to research it.
I just can't figure out what is wrong with this last surgery eye seems to be irritated from the lower lid now. Should have left it alone and suffered with the way it was I guess, Hell it's been 28 years what's another 20.
Title: Re: My 28 year battle with dry eye.
Post by: nancyann on April 13, 2013, 07:26:00 pm
hi badyellow: You need to get on the internet to find a scleral lens fitter - if you have to travel to see my doc, Ken Maller in Ft. Lauderdale, Fl, so be it. You shouldn't have to go through the eye pain/burning I know you are going through.
This lens has changed my life. I don't know why your doc said you're not a candidate - anyone w/ severe dry eye is a candidate.
Neither my oculoplastic surgeon nor my ophthalmologist were aware of this lens.
I was putting lubricant in my eye every 1-2 hours before finding out about the scleral lens on this website which has changed my life. It took me 2 months to now be able to put it in on the 1st try every time! Research if there is someone near you who fits the lens, if not, I'm telling you, come to Ft. Lauderdale to Dr. Maller, he's amazing! He sees people fron all over the world.
Hang in there my friend - after almost 7 years of 'burning eye,' I have gotten relief....I can't imagine what you have put up with for all these years...
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on April 13, 2013, 07:32:03 pm
Thanks Nancyann I am going to find someone that can fit me with one. My local eye Doctor is pretty good. I think after he researches it he will be willing to try. It's nice to talk to people that know what it's like and care enough to help, Thank you all
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on April 13, 2013, 08:11:57 pm
Saralynn, got my fingers crossed for you, the sooner someone gets you a lens the better as far as I'm concerned. 

Badyellow,  Nancyann is so very right, there has to be someone that will fit you for this lens.  If the doctor had at least given you a reason why the lens wouldn't work then you would be able to understand but just saying no isn't good enough.  It's not his/her burning eye to deal with everyday.  My eye was bothering me today, not getting enough sleep during the work week, took a nap after work this morning and feel great.  Work was crazy this morning had as many customers in a 4 hour period as we normally have in 8 hours with less employees to help, couldn't have done it without the lens, wouldn't have had time to put the ointment in like I use to have to do, every 15 minutes the last year or so.  I'm guessing that somewhere out there someone can't use the lens for some unknown reason but as Nancyann & I have said from what you have told us we can't see why one wouldn't work for you.  Could you call and ask the doctor why the lens isn't right for you, should be able to get an answer without a visit since the decision has already been made.  Would hate to see you spend a lot of time or money trying to get a lens if there really is a reason it wouldn't work for you.  My eye doctor said he didn't think it would work  (was afraid the lens would stick to my eye as it is so very dry) but referred me to whom he considered to be the best contact lens specialist in town.  I'm so very glad that finding the right doctor was so easy for me, might have given up as I have before.  I wish that we could contact everyone that has ever been on this board and those that haven't found it to let them know how great this lens is.  NO Nancyann nor I get any royalties from the lens company, we just want everyone to be pain free!  Good luck!  Looking forward to hearing that you are getting fitted for your lens too!  Jill 8)
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on April 14, 2013, 08:27:04 am
The nurse at my eye surgeons office is suppose to call me and tell why he doesn't recommend the lens for me. I still am going to seek out some one that will try to fit one. I work outside with fertilizers and chemicals (Golf Course) I don't think that would have anything to do with it. Maybe I need a new line of work. Been doing it for 35 years (since High School) now and my eye has never been this bad at work.
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on April 14, 2013, 09:14:14 pm
I don't understand why my eye got so bad the last couple of years either.  I thought maybe it was the change in ointments, working more hours, etc.  I think now that it was just a progressive issue.  If I had the records to show how much eye ointment I bought over the years I would probably see that I bought more and more each year as my eye got worse.  I was to the point where I thought I might have to try for disability as I didn't think I could continue working.  You don't need a new job, you need a contact lens.  The lens I have I got the day I walked into the eye doctors office, she had a few lenses she used to try and see what would work for a patient, she let me take one home.  I tried several over the next couple of months to see what was best but always ended up going back to the first one she gave me.  Relief is just around the corner, hope you turn that corner soon!  Jill  ;)
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on May 02, 2013, 02:56:24 pm
Not having any luck finding anyone that can fit the schleral lens. My local eye Doctor says you have to be certified. He is going to try to get certified but who know how long that will take. Haven't looked in the Pittsburgh area but don't think I could drive the 3 1/2 hours at this point. Don't know where to turn next.
Today, Thursday eye was awful at work. Drove the hour home holding it shut. Monday was the same, Tuesday and Wednesday eye was great, almost forgot to put drops in it felt so good. What could be the difference? Same weather same job. Don't have much trouble in the morning with my over hour drive, just a couple drops in the morning to get me going.
Want to get back to my surgeon in Pitts. he wants to see me just can't make it happen. This sucks.  :(
Title: Re: My 28 year battle with dry eye.
Post by: saralynn143 on May 02, 2013, 03:45:48 pm
A couple of suggestions - I just stumbled upon a dry eye forum at http://www.dryeyezone.com/talk/forum.php - there is a section for scleral lenses there and you could do a search for your city and see if anything turns up.

I found a certified fitter nearby by calling Valley Contax (the lens that Jill Marie has) and asking for a referral. Their contact info is at http://www.valleycontax.com/support_contact.php

You could also contact other scleral lens manufacturers. Here is a list that I have been compiling. It is probably not complete but could be a start. Good luck.

Acculens Maxim
Advanced Vision Technologies AVT Scleral
Art Optical Paragon NormalEyes 15.5
Art Optical Rose K2 XL
Art Optical SoClear Standard
Bausch and Lomb Boston
BostonSight PROSE
Essilor Jupiter
Essilor Perimeter
Lens Dynamics Dyna Semi-Scleral
TruForm Tru-Scleral
Valley Contax Valley 16.5
Visionary Optics Jupiter Scleral
Title: Re: My 28 year battle with dry eye.
Post by: badyellowvette on May 02, 2013, 03:53:41 pm
Thanks saralynn I will continue looking for someone. Living in the middle of nowhere is nice, don't have to lock our doors, leave the keys in the car but getting help with something like this is sometimes a problem.
Title: Re: My 28 year battle with dry eye.
Post by: Jill Marie on May 03, 2013, 11:08:56 pm
My husband and I would like to move to a smaller town as I was born in one and loved it, however, I'm concerned about the medical issues I have and getting good and convenient treatment.  Sure hope you have some luck with all the great info. Saralynn gave you.  I didn't have to go to a special specialist, just went to the contact lens department at the local eye clinic.  My lens isn't as big as the scleral lens other have gotten but it sure works great.  Good luck, Jill