I am trying to find a doctor who has experience with recurrent bronchogenic cysts.
My 8.5 yr daughter has had chronic respiratory infections/pnuemonia's since 10 months old. At 5.5 yrs a bronochogenic cyst was finally found as the root cause. She had a left thoracatomy to remove most of it. A little over a year later, she became symptomatic again. The cyst was growing back. Last summer, at age 7.5 yrs, she had a 2nd thoracatomy, again most was removed. A followup MRI earlier this summer shows the cyst is now growing back a 3rd time. She is not symptomatic yet, although it is is slightly compressing the left airway again. The current plan is to watch her clinically. I want to be as prepared as possible when (if) she becomes symptomatic again. I am desparate to find a doctor who has experience with recurrent bronchogenic cysts, medical techniquest to get rid of the cyst without surgery and/or a surgeon who knows how to remove the entire cyst so it can't grow back.
Any help/direction you can provide would be must appreciated.
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