Solving a Medical Mystery of a Hidden Venous Malformation

In October 2015, I noticed a large, firm lump on my jaw by my ear. It swelled up throughout that day and began to hurt. Out of concern, I went to my local ER, which was the start of an eight-month journey to find out just what it was. I saw four more doctors, had various tests, and the shared diagnosis was that I had a swollen parotid gland. The last doctor sent me to see Eric Genden, MD, at The Mount Sinai Hospital.

After an examination and a review of my test results, Dr. Genden thought it was most  likely a vascular lymphangioma, but where those are normally soft, mine was firm, which was very unusual and concerning. I had no pain either—other than that very first day.  To be certain, he sent me for an MRI and an MRA. After those results came in Dr. Genden still thought it was vascular in nature, most likely a hemangioma. He thought I should go see Gregory Levitin, MD, at New York Eye and Ear Infirmary of Mount Sinai because this was more in line with his specialty. And that turned out to be true.

When I met Dr. Levitin I was impressed by his friendly, open, and direct manner. He was happy that Dr. Genden had referred me. Dr. Levitin had already viewed my films and was eager to figure out what my lump was. He had a couple of ideas and was pretty sure that the prior diagnoses weren't quite right. He thought that I would need surgery to remove the lump and explained how he would most likely approach this type of surgery—what steps he would take and how another surgeon might approach it.

Our next step was to get an ultrasound. But that didn't show what he was looking for. He then performed a biopsy. But it didn't produce the results he expected either. Dr. Levitin was sure there was more to it. He said surgery would be the only way to truly find out what it was. So I agreed.

On May 31, 2016, Dr. Levitin assembled a team to perform my surgery, which included intraoperative facial nerve monitoring to map and monitor my facial nerves in order to protect them throughout the procedure (because safeguarding them was of utmost importance).

During approximately four hours of surgery, Dr. Levitin discovered that the growth was much deeper than anyone expected. It was not on my parotid gland at all but underneath the muscle and attached to my jaw. It had been pushing the gland outward and may have been growing slowly for 10 years. So slow that no one noticed. Not me or any of my family or friends. Fortunately it was fully encapsulated and he was able to remove the whole thing. Best of all, the growth was not cancerous. The final diagnosis was a venous malformation.

Another positive outcome of my surgery is that my scar is almost invisible! That makes me happy, and I tend to point it out to anyone who asks about my surgery because I enjoy seeing their amazement. I may be biased, but I don't think another surgeon would have done such a fantastic job.

I was fearful of the whole procedure and possible results. Especially since it was my face—what I present to the world—I could have easily ended up disfigured or with facial paralysis. And I'm sure I would have in a lesser skilled surgeon's hands. I trusted that Dr. Levitin would fulfill my belief in his expertise. He was available to me throughout my recovery and answered any questions or concerns that I had.

Dr. Levitin is a gifted surgeon. He also has great confidence in his skills but without the overbearing ego that one might expect to accompany that. He is genuine and insightful. I'm glad that he didn't look at the test results and accept them at face value. Instead he recognized that I was presenting him with an uncommon problem and he knew the solution. I could see that he loves the challenge of solving a mystery. My trust in both him and his abilities started on day one.

Dr. Levitin, I thank you for taking such wonderful care of me by unraveling the mystery of my lump, restoring  my face back to its normal appearance, and making me well again. I am forever grateful.

- Judy Lagerman