[snelsen]

#1060611

Hello, thought I’d check in.

The discouraging news:

I am one of the very unfortunate ones who has very severe TED. Seven years later, it still impacts me every day of my life, and the night! I continue to tape on eye closed when I sleep, for it drifts open. I am told that having and orbital decompression on my second eye “might” help, but I am DONE with surgeries. My surgeries are listed below. I also had two courses of high steroids, which helped as long as I was on them.

My eyes sting and burn

Quote:

all the time, and are never comfortable. Not ever. I have to wear “fit over” sunglasses over my regular glasses. I am very sensitive to bright light. I have to wear a large brim visor, for there is glare that interferes with my vision, if I don’t wear the glasses and visor.

Neither graft from my hard palate to my lower lids, was successful. On the contrary, it took two years, and multiple visits to oral surgery at a major academic center, to carefully watch my hard palate. I basically had a super highway from my palate to my brain, so that was of concern to all providers.

The encouraging news:

I can read! I can drive! I can see well to do anything I want to do. The strabismus surgery to correct the double vision was the best procedure, and also the easiest one. The double vision was crippling to me. I could not read, drive, or even look, any direction but down on the floor. Looking up or sideways were not options, the pain was too great, the muscles to enlarged and swollen to allow it.

Thoughts:

I think I will explore the incidence of very severe TED. I hope the percentage is small. This has been the most difficult physical problem I have ever had, and the one that has impacted my life the most. That is a huge statement, for I have had difficult chemo and radiation for breast cancer…twice!

I have no (known) family history of endocrine diseases, or Graves’. I also have no known history of breast cancer.

My wish:

That advances in TED will be made that preclude anyone, every again, having severe TED.

Shirley

[snelsen]

#1183621

And a little bit more.

My eyes stream tears all day long. I am constantly taking off my glasses and dabbing them with tissue.

I have found that Systane gel and ointment for nighttime on the eye that I don’t tape…really helps. I use eye drops all day long, usually Soothe or Systane. Be sure to use non-preservative drops, gel and ointments.

For anyone who has TED, I suggest being very diligent about finding docs who are familiar with TED. And want to have TED patients.

Also, for some people, it is difficult, and sometimes not possible to work with TED in the active phase. This IS a real medical issue, and FMLA (family medical leave) should apply for time off, and your job will be protected. I think I am correct about this. I worked at a state university, so I am unsure how easy it would be to do this if you work in a very small business.

Shirley

[Kimberly]

#1183622

Thank you Shirley, for sharing your experience and your thoughtful comments.

I have not seen statistics on the number of TED patients who complete surgeries, but still have ongoing eye issues. (Our Founder, Nancy, is also in that group).

There is a fairly new collaborative project where TED patients can donate samples collected during surgical procedures to be used for research studies. Hoping that this will further progress in understanding the causes of TED and improving treatment options.

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

http://thyroideyedisease.org/iteds-biobank/

Wishing you all the best!

[scanders]

#1183623

Thanks for sharing, Shirley! I so admire how strong you’ve been through it all, but I sure wish you could get some relief! You are an inspiration for the rest of us.

[Robboford]

#1183624

Hi Shirley, Sorry to hear the TED is giving you even more grief. I am also in the severe category and although my surgeries will be happening soon (hopefully), I have not had to suffer or endure the effects for as long as you. It is truly the worst part of the Graves’ journey. I too hope for further research and some inroads into treatments that will have a higher percentage of working. My ophthalmologist is adamant that even after almost 2 years and with my antibody levels still really high that we should be waiting for at least a reduction in antibody levels before he attempts surgery. You have been a source of inspiration and your knowledge, advice and guidance as a fellow warrior has been priceless. Hopefully in the future there will be better treatments and options available to sufferers. I am also able to drive during daylight hours and dry conditions, but due to my failing eyesight I have had to give up cross stitch and quilting. On the plus side though, when I received Radiation treatment, the centre I attended had knitted squares for patients and carers to do which are then made into blankets for cancer patients. So in the past year, I have completed 248 squares which will be made into blankets for cancer patients. So out of something bad there is always a plus side. Hang in there Shirley, I am praying that there will be some “better” days ahead for you, and thank you for your contribution and wisdom to this forum.
Best wishes and sending cyber hugs from down under
Debbie (A.K.A. Robbford)

[Raspberry]

#1183625

Shirley, your strength and good heart always shines through. I so much wish you could have some relief from this. That everyone could have relief! I often get frustrated with people who don’t take thyroid disease seriously and say oh you just take a radioactive pill and you are done. It’s a lot more than that. Thanks for sharing you story and courage with us.

[snelsen]

#1183626

Debbie,
gosh, thank you for your thoughtful post. Of interest, but that is all, I did have antibodies and…hmm, I would have to look, I have forgotten the other test…
at the very beginning of TED, but it was to pretty much support what was already obvious, that I had TED. Which taught a lot of people in health care and on this site, that TED can occur five decades after having Graves’! Now that it has been a long time since anyone has even thought to check antibodies, I am curious to know if they are elevated..or not! I will see if anyone is willing to write the order for the lab.

Your wonderful knitting of squares is lovely for you, as well as all the other people who will just love to snuggle up under the blankets, during treatments, and long afterwards. What a thoughtful and productive activity! I have not thought of knitting for years, but I think I could “do” a square!

Cyber hugs received and appreciated! Maybe I will explore coming “down under,” from “way up here!!”

I don’t think my situation will change from what it is now. I am very, very grateful for the wonderful tape i found, that does not hurt eyelids and tender skin!

I am driving but avoiding bad traffic and crazy freeways as much as I can. I do not drive the freeway at night, and don’t need to. Generally daytime driving, except for very rare exceptions when I know exactly where I am going, and feel comfortable driving there at night.

Raspberry! Fortunately, some people really ARE done with TED! I hope you are one of them!

Shirley

[Liz1967]

#1183627

Shirley, I am sure you have already tried this, but i would suggest a corneal doc to consider either punctal plugs or cautery for your dryness. It works great. If you have no glaucoma issues, maybe a soft steroid a couple times a week would help. Or maybe bandage contact lens? I am not a doc, just a couple suggestions of things that have helped me.

[snelsen]

#1183628

Liz, thank you so much for taking the time to think about this and write!

Yep, tried them most, not all. Main problem stems from the combination of severe TED with two failed surgeries, grafts from the hard palate to lower lids, intended to elevate them. Instead, the whole situation was made much, much worse.

Guess I am jaded on any surgical intervention now. I’ve had so much! But not cautery. I will explore it. Yes, steroid drops help, but long there use, even a couple times a weak, is contraindicated. (I LOVE steroid drops!) When I am in severe discomfort, I use them now and then.

Thank you so much for your thoughts, and I will make an appointment this week to see if I am a candidate for cautery!

Shirley

[Liz1967]

#1183629

Shirley, I forgot to mention I use Restasis drops also. It is a cyclosporine drop. I have been using it for two years. Not totally sure if it works, but when I try to stop it, things do seem to get a bit drier so afraid to stop! There is a soft steroid, Alrex, which can be used longer term as it is used for seasonal allergic conjunctivitis. I used lotemax twice a week, which is alrex only a bit stronger. There are also nonsteroidal anti-inflammatory drops, like diclofenac drops, you can ask your eye doctor about. Anyway, I hope you find something that helps. I just had orbital decompressions on both eyes and have white, not red, eyes for the first time in two years. Still dry but better.

[snelsen]

#1183630

Liz, so glad you have the OD’s behind you! I found the recovery hard, but a piece of cake compared to the grafts from mouth to lower lids. THAT was a big mistake.
I think I would profit from an OD that did not have one, but I am so burned out on surgical procedures, I will have to think about it a long time. Not sure I am willing to take any of the risks…like double vision again. Plus, I am now pretty old! (:

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