Hunter was a normal kindergarten student in 2006, except for the one Saturday morning that he woke up with his eye swelling.

We had taken him skating the day before, and so with childhood mishaps being so frequent in young kids, we just didn’t think much of it. But by that next Monday morning, it had swelled up so badly it looked like there was a knot the size of a marshmallow above his eye, pushing his eye out of its socket.

Right away, we went to his pediatrician, and he directed us straight to the Children’s Hospital in Birmingham, AL. He had surgery the very next day and 13 cc’s of fluid were drained out from behind his eye. This seemed to have worked and stopped the clogged vessels from swelling.

Six years later in October 2012, his eye had started slowly swelling over a weeklong period, and it was much worse than the last time. He had surgery again on November 1st, and after 18 cc’s of fluid were removed, in three days it had swelled up badly again. So on December 4th we had one more surgery before we started exploring other options.

This time it seemed to have worked: 24 cc’s of fluid has been removed and his eye looks normal, having sunk back into his head like it was supposed to. We are two months out of this surgery, with no signs of it returning right away. We do not know when it will be back, so we are taking a “wait and see” approach as there is no known cure (for Lymphangioma).

Right now he seems to be a quite healthy 11-year-old. And we are very blessed.

7 thoughts on “Beginning in Kindergarten, Hunter’s Eye has Swelled Three Times Due to Lymphangioma”

  1. jody says:

    Feel free to join the orbital lymphangioma group on Facebook. We all hav children effected by this condition and would happy to share with you about our experience with Dr. William Sheils at Nationwide Children’s Hospital in Columbus,OH….my daughter was his third patient with his radiology approach and she is doing well.

  2. Keri Harris says:

    Jody,

    Thank you so much for reaching out to me and for the Facebook invite. I looked for it and think that I found it. I sent a request so maybe someone will add me. I would love to talk to you and everybody else about Lymphangioma. Hunter has a wonderful Opthamology plastic surgeon that he has seen since he was 5 years old. Hunter is now 13 and has not had to have surgery since 2012. I hope that I hear from someone soon. Thank you so much

  3. faye zare says:

    Hi Keri,
    would you please email me.
    Thanks

  4. Trisha DiMario says:

    I pray Hunter is doing much better.
    In 2006 my daughter was in the hospital for 6 days having 4 surgeries, her doctor up all hours trying to stop the bulging. We have an awesome group here in the Mobile Alabama Area that have worked side by side on her since the age of 3 months. We have been blessed, we have traveled to Jacksonville, Mayo clinic for the doctor there to say he could not do anything, Arkansas for the (1) doctor to say he did not have time, (2) doctor was from Boston, he came in and talked to us, gave us some hope. We flew to Boston to Mass Eye, Ear and Nose. Had surgery to remove some bone and try and remove some of the mass, but it started bleeding and bleeding was very difficult to stop. We have been to Houston to MD Anderson, there we were given chemo and to continue every two weeks. This was very difficult. We thought all was fine at this time but then the bulge came. She went to the doctor which by the way is AWESOME here in Mobile and he put her in the hospital to try and relieve pressure put in drain tube took it out repositioned it. This all happening in the 6 days she was in the hospital.
    Last he found a procedure that was like glue they inject it, and are able to chip away some of I in order to debulk it without it bleeding.
    10 years almost to the day has passed and here we are sending emails to doctor everyday, he is watching it and she has long since become a pro at telling you her vision almost perfect. Her doctor trust her and her diagnosis of what her vision is and we are at a wait and see at the moment .
    So I pray your boy is better and continues to be. as a mother this is very hard no matter the age. Nikki my daughter is now 26.

  5. Wendy Severn says:

    Trisha,

    My daughter is 17 and was just diagnosed with orbital lymphangioma about a month ago. We are just at the beginning of our journey. So far (1) specialist in Omaha and (1) in Iowa City will not touch her. Her eye is bulging and she is in so much pain, that seems to be getting dismissed. Please any names of doctors that are willing to help would be greatly appreciated!! Anyone who has info please feel free to let me know.

  6. Keri Harris says:

    Hello Wendy,

    My heart goes out to you and your daughter. I know exactly what you are going through. I have been there. Hunter’s doctor is wonderful and at the time he was diagnosed with Orbital Lymphangioma, Dr. Vicinanzo ( Dr. Vic) only new of 7 other cases nationwide and 3 of which were his patients. He consulted with his colleagues at Harvard, where he studied, and decided to drain the vessels behind his eye. This worked wonderfully, except the fact that it returned 6 years later. I said all that to say this. His doctor is in Birmingham Alabama at the Callahan Eye Foundation, his office is actually located at Alabama Ophthalmology Associates down the street. Here is a link to his bio and I strongly recommend you contacting him about your daughter. Hunter has had 3 surguries by him, and to look at him today you would never know that he has this disease. He does, however, have a lazy eye. But I am just happy that this is his only issue he’s had in the last 3 years. There was almost no scarring. Hunter still does swell slightly when he gets sick (ex.upper respitory, sinus infections). But that’s a small price to pay, for him still living with this disease.
    I pray that your daughter gets the treatment she deserves. Please don’t hesitate to let me know if I can help in any way. My email is jaybowski1120@aol.com if you would like to converse about details.

    http://aoapc.com/aoa/physicians-matthew-vicinanzo.shtml

  7. Keri Harris says:

    I would be happy to, please include your email.

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