It has been a long time since I posted here but wanted to share an interesting experience I’m going through that I hope can be helpful to others who think TED was in their rearview mirror. I apologize in advance for the length of this post.
After a year of moderate TED, I had bilateral orbital decompression in September 2012 (endoscopic removal of both medial walls via ethmoid sinuses, orbital floors via lower lids, and fat behind the eyes via upper lids), followed by bilateral repair of eyelid retraction in July 2013. Aside from minor fluctuations in TSH, since then I’ve had no issues and was glad to put Graves’, and especially my eye problems, behind me.
After the OD, the ENT surgeon who operated on me alongside the oculofacial plastic surgeon, told me that he noticed my septum was significantly deviated toward the right. This was surprising to me as my nose isn’t crooked, but my nose is very narrow, so he explained this may cause problems in the future.
He was right. About 8 weeks after the OD, I developed a severe sinus infection that required antibiotics. Like clockwork, I’ve had bad sinus infections every 8-12 weeks for the past 3.5 years. In early 2014, I had a CT which I am told showed nothing unusual (still working to get my hands on a copy). I now get scoped once a year, sleep with a humidifier, use Flonase daily, and use a Netipot, antibiotics and Sudafed each time I get sick. I can never breathe through my nose, blow thick mucus and blood clots out several times a day, and have just accepted this is my life now.
In April 2015, I started experiencing frequent watering in my right eye. This was a little concerning, because this is the eye that bulged more, and required a lot more “work” per say during the OD. I went to an ophthalmologist who determined my tear duct was completely blocked, most likely from my recurrent sinus infections, and was unrelated to the past Graves’ ophthalmopathy. She unblocked it with a sharp tool in her office, and sent me on my way with steroid eye drops to use for a few weeks to keep that area from swelling to the point it blocked the tear duct. It worked.
Until November 2015. The watering began again and I was at a new job starting over with a new deductible, so I tried the drops again myself, but to no avail. It became really bad. I couldn’t go more than 60 seconds without wiping my eye otherwise the tears would block my vision and eventually drip down my face. This made client-facing work embarrassing, and the skin around my eye as well as the eye itself became quite irritated from the constant tissue rubbing. I noticed my eye wasn’t closing all the way when I slept. One day in January, I took a class at the gym and went to the locker room afterward. I was beat red with no makeup on and my hair pulled back, and I realized that my right eye was VERY obviously bulging. Over the next few weeks, I began to experience more frequent headaches and an aching pain above and behind my eye. In February, the eye became bloodshot. OTC redness relief drops did nothing, so I finally made an emergency appointment.
I went to a neuro-ophthalmologist who looked at my chart and my eyes, and confirmed my worst fears – TED was back. He explained it was unusual for the TED to return after so many years, but that it was possible and happening. The watering is because the eye is more exposed to air and isn’t closing all the way. He ordered a CT to determine the extent of the swelling and confirm the optic nerve was not compromised. He prescribed prednisolone eye drops which immediately relieved the redness, but admitted they wouldn’t help the watering.
Four days after the CT, he called me with what became the best diagnosis I’ve ever received – this was not TED at all, but a non-cancerous mass in my sinus that had spread to my orbit, pushing the eyeball right out of the socket. What?! I didn’t even know that could happen. He needed to see an MRI to confirm, so I went for that last week. The MRI confirmed a large mucocele in my right ethmoid and frontal sinuses that had caused the bone to bow and push the eye forward. It has likely been expanding in there for years, possibly triggered by the OD or after when the sinus infections began. I have done some research and found peer-reviewed articles about other former TED patients who underwent OD and later developed mucoceles that caused symptoms very similar to TED. Interesting…
The neuro-op is sending me to an ENT surgeon, because the only treatment for mucoceles is sinus surgery. Although my facial/sinus surgery journey is apparently not over, I’m beyond relieved my TED one is. And the proptopis should be gone immediately after surgery.
I wanted to share this here because both me and the neuro-op assumed this was TED all over again – it looked exactly the same, and had he not ordered the CT and MRI, we wouldn’t have found the mucocele and I might continue feeling sorry for myself about TED and possibly even starting a miserable prednisone treatment for something prednisone couldn’t help. A TED flare-up more than 5 years since entering the “cold phase” is unusual and should be treated with suspicion. Push your doctors to look further before you accept that you have to go through this again!
