[ikennn]

#1060577

Hello everyone! My name is Ken and I just wanted to introduce myself and my story in hopes that maybe I can help someone going through something similar. I also have a few questions at the end.

I’m 24 and I have Alpha Thalassemia, its a genetic disorder where I don’t make enough blood cells for my body. From this disease I suffer from anemia, jaundice and other various symptoms. I had my gallbladder and spleen removed at the age of 5. Not much was really known about my disease and not much is still known about it. I was born in Texas and I still live here, the majority of foundations for my disease are overseas. Anyways, from a young age I’ve noticed that my eyes were uneven. I figured it was my eyelids and that it was just a cosmetic thing. Around 2009 I went to see a eyelid specialist and had eyelid surgery and everything seemed fine. Well about a year ago I noticed that my eyes were getting uneven again and so I was refereed to a blepharoplasty surgeon. This is when I was informed that I may have graves disease because he’s seen my problem before. We tested my hormone levels and they all seemed to be even. I looked into the disease and realized that I may have hyperthyroidism. I saw that some of the symptoms included excessive sweating, insomnia and other various things. I was certain that I had hyperthyroidism but all tests said no. My doctor told me that I may have TED and that it flares up and then goes dormant. They believed that my active stages were when I was possibly a toddler and now its fine. I didn’t think more about this. I was foolish and was just wanting to have my eyes looked even more than anything so I trusted my doctor. I did very little to no research and just agreed to everything he suggested. Which is stupid because I’m a pre-med student, I know better. Well, I just had my orbital decompression surgery on the 10th and recovery was the worst. I woke up to excessive bleeding out of my eye. I was kept at the hospital over night. My first night at home, I had a fever of 104.5 but it had subsided within a few hours. I then started to vomit everywhere from the hydrocodone they gave me. I then started to stabilize and felt fine. I went to my post surgery appointment and they said everything looks fine now.

So that is my story. Now I have a few questions.
1. Do you guys think I should pursue a full diagnosis if I have TED or graves? Money is the main limiting factor.
2. I’m currently suffering from severe double vision. To the point where I am unable to drive. I tried to drive a short distance with one eye and I’m extremely uncomfortable and would rather not risk anything. I tried looking up previous posts and it seems that people get the eye muscle surgery to fix the problem months after their OD. Being a pre-med student this is disheartening as I am unable to drive anywhere. Is it possible my double vision may go away as my eye swelling fades?
3. My OD eye now looks sunken in compared to the other eye that was untouched. Has anyone else experienced this?

Thanks!
Ken

[Kimberly]

#1183474

Hello and welcome! Hopefully, those who have had the OD surgery will jump in with their experiences.

I do know that a certain percentage of patients who have OD surgery will subsequently develop double vision and will require a second surgery to correct the DV after the first surgery has completely healed. In the meantime, if the double vision is fairly stable, some patients will get relief from using glasses with prisms – either ground into the prescription or stuck on to the lens. Others choose to patch one eye. For still others, if it’s mild, they might get relief from tilting their head a certain way.

There is a therapy called orbital radiotherapy that provides relief from double vision for some patients, but the results are mixed. Here is some additional info:

(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/radiotherapy/

As for getting a definitive diagnosis, that would be helpful for you – if nothing else, so that you can be aware should you develop symptoms of hyperthyroidism in the future. Most Graves’ patients have eye and thyroid issues at the same time, but the eye issues *can* occur either before or after the thyroid levels go out of balance.

There are antibody tests (TSI or TRAb) that will let you know if you really are dealing with Graves’. Depending on your insurance, they can run several hundred dollars. But this would probably be good information for you to have if you can swing the expense.

I hope that this helps!

[snelsen]

#1183475

Yep. re #1. You do need a definitive diagnosis. In retrospect, you certainly had Graves’ symptoms. BUT you are miserable.

And money is a limiting factor. Do you have any insurance at all, or are the co=pays still an issue if you have it?

Hi Ken,
You can have TED with NO abnormal labs. The strabismus surgery for double vision is a walk in the park compared to an OD. As an example of TED, I developed TED almost FIFTY YEARS after I had Graves’. My labs are normal, but I have had a thyroidectomy, and have been on Synthroid (thyroid replacement for years.)

The best doc to evaluate you for TED, is a neuro-ophthalmologist. Any way you can find one? I am wondering if you physically went to the doc’s office, pled your case, if you might get a break financially. These docs have LONG waits for getting an appointment.

2. Do you feel that the DV occurred only after the OD? Or did you have it before? Sorry, I am tired, and may have missed that.
Yes, I had DV, and I found that prisms (more money) helped, and so did patching one eye, which I did when I tried to drive. Then I had an accident, all my fault, and tried to take public transportation and carpool without driving for a while. All of this sucks big time.

3. Yes, my other eye is very bulgy. It will not close at night. I have to tape it closed at night. Only tape in the world for that is called Mepitac. Great stuff, you have to order it online. I don’t care if my eyes look different, I just don’t want to subject myself to another OD. But I am much older than you. I understand.

In my opinion, radiotherapy is something to avoid, if only for the very large expense, for a treatment that is temporary. My neuro/op doc, my oculofacial surgeon, both do not use it in their practice. But that is my experience, and of course I am just another patient in the awful world of Graves/TED.

I think the biggest issue you have is finding the right docs so money is not wasted, and the financial issue itself.

I use many eye drops a day, and eye gel and lubricant at night.

I am wondering, because of your other diagnosis of alpha thalassemia, if those docs can help you with referrals and smooth the path for you, for you are definitely complicated!! Are you getting iron transfusions on a regular basis?

Shirley

Keep writing. This is a great site with great people. The best there is.

[ikennn]

#1183476

Thank you Kimberly and Shirley! Your responses were wonderful and informative. Sorry for the late reply, with the holidays and everything else going on it was a bit crazy.

Quick update, my double vision seems to be improving with eye exercises. Its been about 3 weeks since surgery and things are definitely improving very slowly. I can drive now, slowly and with one eye covered. Seems that i’ll have a pronounced scar on my face but as long as I have my vision I don’t mind.
I do have insurance provided by my university but I’ve also decided to take a temporary leave of absence while I get my life together. So any future procedures would be out of pocket. (I looked at the bill and almost passed out. My OD was about $100,000 in all.)

I will definitely look into a nero-ophthamologist.

The double vision definitely occurred after surgery. I’ve never experienced double vision before in my life.

I do not think I will EVER undergo another OD after my experience and seeing the costs. If I had a life threatening condition then I would consider it again. After this experience I don’t care if my eyes look different. I would rather have my vision than have evenly matched eyes.

I’ve asked my hematologist and she does not think I have problem. I love them but I think they think I’m crazy or a hypochondriac.

I’m lucky enough to where Im non-trafusion dependent but it has it drawbacks. My full diagnosis term is “hemoglobin E trait/alpha
thalassemia/AE Barts Constant Spring disease”.

You’d think having hemoglobin E trait/alpha thalassemia/AE Barts Constant Spring disease would be enough but life also threw in TED. To say my life is crazy is an understatement, although I still love my life. I’m lucky to be alive and I live each day in great stride. My motto is that Life is beautiful. Im one of the lucky ones to be able to see beauty in everything.

Okay I’m done being sappy.

Ken

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