A cyst is a cyst, until it's a fistula...

We met today with University of Michigan's Pediatric Ear, Nose and Throat specialist Dr. Glenn Green. He taught us that Kate's branchial cleft cyst is actually not a cyst but a fistula. Here's the difference:

• cyst--an enclosed structure, with no openings
  
  
• sinus--a structure with one opening, perhaps internally
  
  
• fistula--a structure with two openings, one internally and one externally

So she has a branchial cleft fistula, at least 2 cm. long internally from the ultrasound (they lost the tract on the ultrasound screen after that, so we really don't know how much longer, if any, it is) Dr. Green told us that the only treatment for a branchial cleft cyst (or fistula) is surgery, and unbelievably in this day and age, it still requires a GIANT neck incision. At least, this is what I heard. In reality, the incision will be about one inch (but that's giant on a baby girl's neck, don't you agree?) I was heartbroken about the severity of the surgery (1.5 hours long, general anesthesia, slicing my baby's NECK WIDE OPEN, risk of permanent nerve damage to the tongue and/or tonsil removal mid-procedure, overnight stay at Mott Children's Hospital, resulting inch-plus scar on my perfect child).

This was clearly MUCH more than I anticipated. I burst into fearful tears. All that for what appeared to be a pin-hold size opening on her neck? Was this worth it? Could we leave it? I likely had a branchial cleft cyst (closed, but still...), I had made it 32 years without an incident. Dr. Green insisted that within 7-13 years the fistula would swell and then require multiple "ladder" incisions on neck skin that is much less pliable than hers is now. And of course, the danger of infections in the neck can't be understated. We will have to remove this soon.

This is where I must question modern medicine--you can laproscopically remove a woman's uterus but you can't remove a 2 cm. cyst in a baby's neck without an inch-long incision? It doesn't seem right. If anyone knows of a less-invasive procedure on a branchial cleft cyst, please share!

We have scheduled Kate's surgery for September 2010. In the meantime, I will continue to learn as much as I can about branchial cleft fistulas and hope that hers remains safe until then.