Branchial cleft cyst, any have expierence with this?

Silver Member Joined: Nov 09 2004 Posts: 873

I didn't get an official diagnosis yet, my DD's ped. thinks she might have this, and referred me to a surgeon for a second opinion.

Has anyone dealt with this before? how did you treat it? did you do surgery? What was the surgery/recovery like? Was it getting infected or anything before you decided to treat it?

Thanks

ds had this. His actually drained out of a little hole near his collar bone. Bh it didn't get infected and we watched it very carefully. When he was 3 we had it surgically removed. It was a big surgery, I think it took 4 or 5 hours and he slept overnight in the hospital, but it was a very easy recovery and BH its over. It really isn't a huge deal.

OP if you want me to pm you let me know. I will, though I'd rather stay anonymous.

Silver Member Joined: Nov 09 2004 Posts: 873

Thanks for replying amother, I think all these fancy words in the name makes these things sound scary.

how long after identifying this problem did you do the surgery? how large was his cyst?

If you are in the NY area, who did you use for a surgeon?

I guess I should wait before it's confirmed by a surgeon before totally getting nervous.

HI amother from before. Because it had a drain to the outside the cyst never formed a pocket of fluid under the skin as I have heard it does. You could actually see the hole where it drained so it was totally open. The whole was the size of a pin head.

We were refered to a pediatric ENT that specialized in neck surgery. I saw that he had this problem 2 days after he was born and I took him immediately to a doctor fearing the worst. BH all we had to do was watch it and plan on the surgery in the future. The ENT said that if it were to get infected it needed surgery immediately, but if not we could schedule and plan for it. BH we were able to do it without it infected as he had said that it is much more complicated and more risky to do if it gets infected.

DS's brachial cleft cyst actually went from his collarbone in a tract all the way to the back of his throat. We had no idea it connected all the way till the surgery when the dr. followed it all the way back to remove it.

I would totally try to use a ped. ENT though not just any surgeon. We aren't in NT but if you ever want to travel for the surgery we have a great Doctor.

Another thing I should mention is that while uncommon, they do happen. Our dr said he does 4-5 a year and he is in a major children's medical center.

Silver Member Joined: Nov 09 2004 Posts: 873

Interesting point about using an ENT, for now I will try and see the regular surgeon just to get a conclusive diagnosis, as my ped. wasn't definite that what she has is actually a branchial cleft cyst.

Did you have to do any sort of x-ray, sonograms or anything before the surgery to determine the scope of the issue?

Is it very rude to ask the surgeon if an ENT would be better suited to do the surgery?

What type of scarring did your DS have after the surgery?

thanks again for responding, it's very reassuring to hear someone else who has dealt with this problem

Silver Member Joined: Nov 09 2004 Posts: 873

Turns out it's not a branchial cleft cyst, but thanks for the info!