[Des102be]

#1017926

I have been diagnosed with a thyroid condition for approximately 20 yrs. I was diagnosed with what I thought was hypothyroidism. I received a dose of radiation 20 yrs ago and put on synthroid. I now have symptoms of both hypo and hyper. I have continued to go to the dr on a regular basis with my levels remaining normal for the most part. About 4 years ago, my eyes went crazy and I had noticable bugging of both eyes. I went to the eye doctor several times and received glasses but last June I went to get new prescription and I was immediately sent to a specialist in Austin to perform orbital decompressional surgery (July 2010). I had so much built up behind my eyes that it was pinching my optic nerve causing me to go blind. After the surgery my eyes literally went back in my head a 1/2in. I still have numbness on the sides of my face and my eyes just feel funny, out of focus. I can close but eyelids, but I do have dry eyes. To make a long story a little shorter, I now have double vision like you would not believe. I wear prism glasses with a prism lense glued to my left lense. I am told I need muscle surgery to correct the esotropia strabismus in my left eye. (I hope im using that correctly.) I am totally new to all the terms. The doctor says I have to wear this prism lens two more months to make sure I am a candidate? I dont understand. He wants to measure things more before he will operate?? Measure what?? I am experiencing several things that I do not know how to describe to the doctors. Not only do I have double vision, I have horrible headaches, my hair is thin, my skin is dry. My heart feels like its beating fast but yet my pulse is normal. Before you suggest a stroke, I went to the ER thinking the same thing. I was sent away after running all sorts of tests, with a rx for 10 Xanax and diagnosed with anxiety. My chest feels funny, I have numbness in my arms and legs at times, I have sinus infections / ear infections that I can not get to go away for longer than a month. Ive been on antibiotics and styroids for the past month and as soon as I get off of them I start feeling bad again. I do have allergies and I live in west texas so the dirt is always blowing. I also have light sensitivity. I dont know the right questions to ask to get the results I know I need. I realize with my eyes the way they are I will feel dizzy, my vertigo is off and the headaches are most likely caused from prisms BUT…. how do I feel normal again?? Can anyone give me some suggestions to ask the doctor?

[Ski]

#1061663

WOW, you are going through a lot! It would appear that you’ve got several things going on, because I don’t think any one thing explains everything. I hope you’re still seeing an endocrinologist (or that you trust your general practitioner) to watch your thyroid hormone levels? Try keeping a daily diary of symptoms, including the severity and frequency of those symptoms, and after about a month, check in with your doctor to evaluate your records.

Also, whenever your doctor tells you a symptom you’re having is not related to your thyroid, please then ask for a plan of action to find out what it IS related to, and how to resolve it, because nearly everything has a cause and, once you find it, you can get some relief. Not everything is thyroid or TED-related, and you deserve to find out what is going on so you can feel well.

The eye symptoms may well have a solution ~ are you seeing either an ophthalmologist or neuro-ophthalmologist? We recommend finding a doctor that’s affiliated with ASOPRS, these are ophthalmologists with extra training specifically related to TED. Here’s a link to their site http://www.asoprs.org.

[snelsen]

#1061664

Hi Des, I (and my eyes) are too tired to write much tonight. I am going to talk mostly about eyes. I have had similar experiences. Clearly you have already had contact with oculofacial surgeons when you had your (it sounds like bilateral) OD’s (orbital decompressions) to relieve the pressure on your optic nerve (s.) I had the same experience. I had killer double vision before and after the surgery, but it was the active phase of Graves’. The prisms did not help me one bit. I tried several different strengths, and gave up. Lucky you if they help a little bit with the double vision. I suggest if they don’t help, don’t bother with them. During all of TED, I have been seeing a neuro-opthamologist, an oculofacial surgeon and an ophthmalogist who does strabismus surgery. Double vision is a complication of OD, but is also part of TED, with severe cases.
But the main message I have for you, is that double vision can be "fixed" pretty well.
I tried to use the website Ski mentioned, but I am unable to have any success with it. I never have. But I think you are best off to ask the doc if he is the one who would do the strabismus surgery, or if he plans to refer you.
But I can tell you that it is not an oculofacial surgeon is NOT the one who does strabismus surgery. Usually it is a pediatric ophthamologist who "does" adults, and it is usually adults with TED. They do this surgery frequently. But the same docs do NOT do OD’s. That is a different specialty. Before you have strabismus (eye muscle) surgery, sequential measurements are CRITICALLY important,and it is these measurements which give the strabismus surgeon the best information on how much to move the muscles of your eyes to achieve single vision. Don’t worry about that, it means you are in good care. In my case, I went to this surgeon all the way through TED, active and inactive (hot and cold) phases. I had to be patient, which I wasn’t, until I reached the inactive phase, meaning my eye measurements were not changing every week or so. The doc can’t do the strabismus surgery then, for he/she can’t rely on the measurements being stable. So if he corrects for strabismus (and no doc would) in the active phase, and you get single vision, your eyes could change again in a couple months. What this surgery does is to move the two places where the muscle attaches, with the goal of single vision. My double vision was forward and up. I could see down just fine for my superior eye muscles (which control looking down) were not very fibrosed (enlarged, less elastic) as my lateral and inferior muscles. THIS IS MY FAVORITE SURGERY. It is easy, and the double vision is hell. I still don’t know what a normal head position is,a nd still have cramps in my scalp, neck and back from tipping my head to try to see a single image.
My main problems are, a complication from my OD which resulted in my being unable to close my left upper eyelid. IT drifts open during sleep. AND, extreme photophobia, and eyes that tear constantly, blurring my vision.

Gotta to go bed, rest my eyes. Will write later tomorrow
shirley

[jansm]

#1061665

I also underwent orbital decompression surgery in July 2010 to save my vision. My eyes never protruded, but the optic nerves were seriously compressed. Since my eyes were not bulging, they also seem more sunken than they once were. The sides of my face are also still somewhat numb, but I notice slight improvement each month. I think it just takes a very long time for everything to completely heal. I also have more congestion and sinus infections than previously. Growing up in the Texas panhandle, I understand completely about wind and blowing dust! I have been told this is fairly common following this surgery. Dry eyes are another common symptom. I use several different eye drops, all of which are over-the-counter and readily available. My doctor recommends Refresh Celluvisc.

I try to remind myself that all these things are minor inconveniences, compared to a life without vision — something that most definitely would have happened to me without the surgery.

Following the surgeries (each eye was done separately), the double vision was somewhat improved. It soon returned, and was worse than before. I was not a candidate for prisms. They would not have corrected the type of double vision I experienced. So, I cannot really speak to any problems you are experiencing with prisms.

I agree that you need to find a pediatric ophthamologist who also treats adults for strabismus. They do need to take many measurements and perform numerous vision tests for good surgical results.
I was informed that my condition was one of the most severe and complex my surgeon had seen, and he has been practicing in this field for 15 years. I underwent strabismus surgery last December. I had mostly single vision immediately after surgery. Depth perception has improved dramatically since surgery. I no longer run into the sides of the garage when exiting or entering! I do still have some double vision when I turn my head too quickly or when I am really tired. My only disappointment is not being able to resume wearing my contact lens. I do not know if it is true of all strabismus surgery patients, but my surgeon is not very encouraging about the prospect. I am slowly adjusting to wearing glasses all the time — just another inconvenience in my book! I could finally return to a more normal lifestyle, and noticed that some of the same symptoms you mentioned seemed to disappear. Stress of not being able to see correctly, and live normally, can really do a number on your whole sense of well being.

As others have said, I would also make sure that you are being seen by an endocrinologist who can address many of the symptoms, and hopefully refer you to ophthamologists more familiar with treating thyroid related issues.

[Author]

Posts