[snelsen]

#1058825

Hello, I am aware of all ointments, drops and gels. It is not enough. I have, in the past, taped one eye shut (hard to do) I have gotten a humidifer in my bedroom. None of this is much help.

I wake up numerous times at night with burning, stinging eyes. I have to be awake enough to re-apply drops and ointment. But they hurt all night and most of the day. Because I don’t get a good, healthy sleep, I am tired the next day. I have had multiple surgeries (see below) the most recent ones being grafts from my hard palate to my lower eyelids. Neither of them were successful, despite this procedure touts the best success rate. Both lower eyelids are still very retracted.
There is too much eye exposed, and incomplete closure is a huge problem for me, maybe for others.

I am looking for any additional measures to try for this miserable disease TED.
Thank you for listening to my vent. I’ve been pretty quiet for a long time about my progress (or lack of progress.)
Shirley

[hope1]

#1170215

I have experienced much of the same issues as you have, Shirley. It often means being fatigued throughout the day because of the constant discomfort. I tried all the gels, drops etc. No need to reiterate that to you-you have been there.

I had immediate eyelid surgery-had some relief. Now I have new pain with recent orbital decompressions-I hope not lasting. While I was initially treated at Mayo’s, I tried some googles they suggested-they sell them in their optical shop. Some have great luck with them. Because my protrusion was so pronounced on one side, I could not tolerate the pressure. They might work for you.

I did stumble upon something that worked really well for me. I purchased them at a shop at Mayos. They are manufactured by NITEYE and are called dry eye comforter eye bandages. They are a clear plastic bubble that seals in the eye’s moisture. I have sensitive skin and appreciated that they have a hypoallergenic adhesive. I would liberally apply the eye gel, then use an eye comforter (moisture chamber) each night. The plastic bubble does fog up-which is a good thing-but you can still see if you wake up in the middle of the night.

The cost was pretty high. I bought a large supply at one time. I swore by them and may need to use again in the future. They really make the eye night time gel work harder. I would wake up with my eyes actually pretty comfortable for the first time in quite a while.

I would try them if you have not used these yet. They are much easier to apply than all the bandaging. Just peel off the protective backing and apply.

Let me know if you need more information.

[snelsen]

#1170216

Hi hope1,
what a joy to check the forum and find your reply! i will, post haste, send for the Nproduct you mentioned. I am assuming that they are one time use? Or can you squeak two nights out of them? They sound wonderful-to me. Thank you so much! I wanted to briefly acknowledge your post, and thank you so so so much!
Not that I would wish this situation on anyone, but it is also comforting to know that I am not entirely alone with this issue. Now, to the website. I’ll write again.
Shirley

[Kimberly]

#1170218

Hi Shirley – Products from this manufacturer were recommended at a conference a couple of years ago, and also from an eye doctor who spoke at our Arizona support group:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.eyeeco.com/

Also, I have not heard back as to whether there are materials available from the event at Kellogg Eye Center in Ann Arbor. However, I have a book on “Graves’ Orbitopathy” from W.M. Wiersinga and G.J. Kahaly. They have a *very* small section on grafting. They don’t say much in the way of recommendations, except that they are not fans of using donor sclera/pericardium, due to the risk of retraction and possible disease transmission. They also have a few studies included in the footnotes:

Eyelid malpositions in Graves’ ophthalmopathy.
R R Waller
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312285/

Eyelid reconstruction with hard palate mucosa grafts.
Cohen MS, Shorr N.
http://www.ncbi.nlm.nih.gov/pubmed/1390426

The use of porous polyethylene (Medpor) lower eyelid spacers in lid heightening and stabilisation.
Tan J, Olver J, Wright M, Maini R, Neoh C, Dickinson AJ.
http://www.ncbi.nlm.nih.gov/pubmed/15317715

Take care!

[hope1]

#1170217

The moisture chambers I mentioned in a previous post are manufactured by Medtronic. Web site is http://www.medtronicENT.com. Mayos is great about sending these in the mail as well. I wish I could recall which shop I purchased them from-they have numerous pharmacies, supply stores etc. If you hit a roadblock-I will call Mayos and track down a contact there for you.

They use these for Graves patients and also for people with chronic dry eyes.

Re reusing them, if the adhesive works again-I see no reason you cannot reuse. I found you could get more than one night out of each chamber-you do have to be careful not to have the gel touch the adhesive-lessens the adherence.

Longer term, I am concerned you do not have a better fix than what you have right now. I do hope you could obtain another consult.

I always appreciate the experiences and advice you share. It has helped me in many ways.

[hope1]

#1170219

The eye googles that Kim refers to in her note are the same as the ones I tried-tranquil eyes. My left eye protusion was so bad that I could not get a good fit. The band around my head finally snapped. If your eyes are pretty even re degree of protusion-these may work for you.

I did like the reduced pressure with the moisture chambers.

[snelsen]

#1170220

Kimberly and hope1,
I wish i had a little hope right now. At the beginning of the week, I will explore the barrier options for my eyes. One of them is burning and hot, day and night. I feel that with the recent palatal grafts, both which failed, i have run the gamut of procedures to help me. Plus my graft site which is not healing, and tissue has been removed down to the palatal bone. This is regarded as very serious by the dentists I am seeing at Faculty Dentistry. I am being watched very closely. The surface of the bone is necrotic, thus no granulation can occur. All very discouraging. It seems to me that any repeat procedure creates more scar tissue and more problems. I am VERY uncomfortable. I really don’t want to live like this, but when i say that, I mean I would like to find a compassionate and skilled physician who can help me so i am not living with all these issues. I felt the same about double vision. i had the surgery, and the world changed in the best way possible.
I hope to find another doctor who will be interested in my discomfort with my eyes. And I sure hope my mouth heals, i am entering month #4.

Question
Kimberly, when I go to the site for the articles you references, I can get only
the abstracts. Kimberly, when i click the cursor to begin a new line, (like after the word “experience” the cursor will only go to the beginning of the line, which fragments my typing. The sentence, “” Is that your experience?” originally after the word “abstracts.”

[Kimberly]

#1170221

Hi Shirley – Wow, I’m sorry you are struggling with this final phase of TED.

On the abstracts, that was what was pulled up when I did a search for the study title. I think they were all at least a few years old, so you could probably go directly to the web site for each journal pull up the full article.

I use the return key to start a new line, so I haven’t had that experience. (I log in on a PC).

If it continues to bother you, I would fill out the technical support contact info here, so that the tech guys can take a look at the issue:

http://www.gdatf.org/about/contact/technical-support/

Take care!

[Bobbi]

#1170222

Hi, Shirley:

I can be of no help at all about the dry eye problems, except for extending the internet equivalent of hugs. I am so sorry that you are having so much trouble with this wretched disease. And I do hope that you feel better, soon.

[hope1]

#1170223

Along with all the rest of us, I wish you the best. The docs at the Kellogg Eye Center have given me some hope. I thought I would simply “hurt” the rest of my life. If you have the opportunity for a consult-I would recommend it.

I also would recommend Mayos for good, comprehensive care to deal with the healing issues with the palate and your other problems. You have been through alot but I sense you still have much strength left. You give to all of us on a constant basis. Bless.

[snelsen]

#1170224

Thank you! This is a marvelous site. I feel I have new friends every day!
It is reassuring to me that you thought you would be like this the rest of your life, and with more help and consult and procedures, you are better than you were!
Do you mean Mayo in Minnesota? I guess there is one in Florida. Minnesota is more doable for me, for i go back to Iowa every year.
Shirley

[hope1]

#1170225

Yes, Mayos in Minnesota. I noticed that they have a dental surgical specialty that does deal with palate issues. I recommend you call for an appointment at the main number and seek advice re what docs to see if you plan to go to Mayos. They will probably have you see mutiple docs in several specialities. There is an opthalmic reconstructive doc there at Mayos as well. He is well regarded. I also know that they have opthalmologists that specialize in Graves.

I thought their endo department was very good-highly rated. But you may not need to see them. I recommend Dr. Marius Stan. Great doc.

Be prepared to stay for awhile. The Mayos system tries to address all issues in one visit-so it could be a stay of several days or longer. Rochester is a great town to spend a few days.

Many of the hotels connect to Mayos by tunnel-a nice feature-especially in the winter.

I think you need to give another large medical center a chance. There are several excellent ones for Graves and corresponding surgical procedures.

I will be checking in on you. Bless.

[snelsen]

#1170226

Thank you. I appreciated being checked in on! I have to do something.
Last night a miserable night followed by a miserable day. Haven’t gotten any aids I ordered yet. Eyes hurt a lot. Probably no trip to Mayo until later spring.
Shirley going to bed just cause eyes hurt, it is only 8pm

[jansm]

#1170227

Have you tried tear duct plugs? My surgeon at Mayo in Minnesota inserted them shortly after my strabismus surgery. I did not realize how much they helped, until one came out. It took me awhile to figure out that was why my left eye was always dry and stinging. Once it was replaced by a local ophthamologist, I was so much more comfortable. I only have them in the two bottom tear ducts. I know one person who had them inserted in upper and lower tear ducts. He sometimes has to literally wipe tears away — but, it is better than the extreme dryness he was experiencing.
I also take fish oil and flaxseed oil supplements. I do think they help with dry eyes. There are now some vitamins on the market specifically for ocular health which contain these elements. As always, it is best to check with a physician to make sure they would not cause problems or reactions with other medications or situations.
If the eye dryness is not seriously harming your corneas, and your eyes would be OK without supplemental drops or gel during the night, is it possible to occasionally use something to just help you get a good night’s sleep? I do not even like taking aspirin, so I am usually the last person to suggest taking any medication. However, it must be extremely difficult to enjoy your days when your nights are so difficult and sleepless.

[brawson]

#1170228

My dry eye symptoms are very painful as well. Sometimes I just feel like pulling my eyes out. When I use the Restasis, it burns. I thought, Gee that’s not good, perhaps I shouldn’t use it. The Dr. said I should continue using it because it helps the tearing. I use hourly Celluvisc and that helps. I find the days I am really busy and miss make the next day worse. Taping my eyes at night has helped but the morning removal is painful. I have tried patches, paper tape, and smooth medical pads with the paper tape. When I was told to tape my eyes, I had no idea how to do that at first and I continue to experiment. My doctor gave me a book on TED and it recommends applying a thick layer of tear supplement then while keeping the eye shut, squeeze the cheek below the affected eye moving it upward and placing mild millipore tape vertically from eybrows down to cheek. This technique allows for the cheek to assist in keeping the eye shut. Before that, I would pull from the top down. It seems easier this way and less painful to pull tape off. The tape I use is a paper bandage tape. I need to look into what millipore tape is. Anyone know a brand of tape that doesn’t hurt when removed?

Barb

[Author]

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