A woman in a hospital surrounded by a doctor, nurse, and surgeon.

My Positive View on Surgery for Graves’ Disease and Thyroid Eye Disease

Last updated: January 2023

Over the past two and a half years I have had one surgery to treat Graves’ disease and another four surgeries to address the damage caused by thyroid eye disease (TED). Five surgeries in less than three years sound like a lot, and it is. Even as I typed this I thought, “Really??” and I re-counted in my head.

My relationship with these surgeries is complicated. Some I greatly feared, and some I was desperate to schedule. Of course, I was nervous and wished that there was an easier solution, but in my case, these surgeries were absolutely necessary. I hear many people say that they wish to avoid surgery at all costs. We are all different and have different needs. There are many factors involved including risks and potential complications, so it is not a decision to make lightly. But for some people, undergoing surgical treatment for Graves’ disease and thyroid eye disease can be life-changing in a wonderful way.

My positive view of surgeries for thyroid eye disease and Graves'

Here is my outlook/experience in a nutshell:

Total thyroidectomy

I was absolutely terrified because the nerves that control the vocal cords are very close to the thyroid, and about 1% of individuals who undergo a thyroidectomy are left with permanent vocal damage. I am a singer and initially said that a thyroidectomy was firmly off the table. But in my case, Graves’ disease proved to be impossible to control through medication, and I was not a candidate for radioactive iodine therapy due to concerns related to thyroid eye disease. I wrestled with the stress of this decision for months, but ultimately I understood that surgery was the right path for me. I eventually found a surgeon who specialized in vocal preservation during thyroidectomies, and I came out on the other side with healthy vocal cords. In the end, I felt infinitely better without my thyroid.

Orbital decompression

I was most looking forward to my two orbital decompression surgeries (one surgery date for the right eye, and another date for the left). Thyroid eye disease has been the most traumatizing experience of my life, and unfortunately, a great deal of irreversible damage had been done by the time I reached the inactive phase of TED. I could not wait to get relief and hopefully feel/look a little more like myself. “I’m sorry to hear that,” people would often say when they heard I had an upcoming surgery. “Please don’t say sorry - I’ve been looking forward to this for years! Something is wrong, and I’m finally getting the help I need - this is a great thing!”

Upper lid surgery

Another surgery that I was enthusiastic about. My surgeon explained that individuals who need both orbital decompression and lid surgeries often see the full results/big picture after lid surgery. Bring it on! Yes, I was nervous, especially since I would be awake for this procedure, but those feelings are normal.

Lower lid surgery

I felt much more relaxed at this point. When I cracked a joke with the resident who would be observing the procedure, my surgeon said, “Jessica’s a pro.” However, recovery from this surgery was much more complicated than I expected. Based on several personal factors I seemed to have a harder recovery than most. I also had to call my surgeon twice because of unexpected pain and one of my stitches opening up. In the middle of this I did ask myself, “Was this one worth it?” Then I had an appointment with my endocrinologist who had seen me through the whole journey. She was so excited to see me on the other side of these surgeries - “You look amazing! You don’t look like you have thyroid eye disease. I’m so happy for you!” I smiled as a tear came to my eye. Yes, it’s all been worth it.

Everyone's experience is different

All of our situations are different and require a different medical approach. Of course, I will not pretend that undergoing surgery/recovery is easy. I also won’t pretend that I am fully at peace with where I am now - things are definitely significantly better, but my eyes will never be exactly the way they were before TED. But I do hope that by sharing my positive outlook and experiences on the subject it might help others feel more comfortable approaching the topic with their doctors.

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