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Solving a Medical Mystery of a Hidden Venous Malformation

NYEE Patient Story: 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 Dr. Eric Genden 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  Dr. Gregory Levitin 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

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Vascular Birthmarks and MalformationsTel: 212-957-6933

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New York, NY 10019

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