Author Topic: My 28 year battle with dry eye.  (Read 14464 times)

badyellowvette

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My 28 year battle with dry eye.
« 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.
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

MNTim

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Re: My 28 year battle with dry eye.
« Reply #1 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
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

nancyann

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Re: My 28 year battle with dry eye.
« Reply #2 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
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.

Dena King

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Re: My 28 year battle with dry eye.
« Reply #3 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
Lime size AN removed Nov, 1981
Complete left side facial paralysis/hearing loss.
1985-1987 7x11 crossover facial nerve graft surgeries -Julia K. Terzis MD, Norfolk , VA
Left eye tarsarophy 1990
Bi-Cros hearing aids 2011
Received left eye scleral lens, Sept, 2012

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #4 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.
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

saralynn143

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Re: My 28 year battle with dry eye.
« Reply #5 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.
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

susanisselhard

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Re: My 28 year battle with dry eye.
« Reply #6 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. 

Dena King

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Re: My 28 year battle with dry eye.
« Reply #7 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!
Lime size AN removed Nov, 1981
Complete left side facial paralysis/hearing loss.
1985-1987 7x11 crossover facial nerve graft surgeries -Julia K. Terzis MD, Norfolk , VA
Left eye tarsarophy 1990
Bi-Cros hearing aids 2011
Received left eye scleral lens, Sept, 2012

nancyann

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Re: My 28 year battle with dry eye.
« Reply #8 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.
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.

ginsue

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Re: My 28 year battle with dry eye.
« Reply #9 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.
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

susanisselhard

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Re: My 28 year battle with dry eye.
« Reply #10 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.

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #11 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.
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

ginsue

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Re: My 28 year battle with dry eye.
« Reply #12 on: April 03, 2013, 05:13:35 pm »
Glad that you found this thread BadYellowVette.  There is a lot of good info here!
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

Jill Marie

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Re: My 28 year battle with dry eye.
« Reply #13 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
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

susanisselhard

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Re: My 28 year battle with dry eye.
« Reply #14 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.

 


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