Branchial Cleft Cyst

carboner over a year ago

Hi
My daughter was operated on last Wednesday, she had no pain after the surgery but still has that numbness around the jawline and down toward the right side of the neck where the cyst was removed, I questioned him on that because when she smiles her left side of the lip is lopsided, he said it could take around a month or so to go back to normal, i was abit concerned about nercve damage.

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Guest over a year ago

It is better to get the surgery done earlier. If you wait too much time it will go deeper resulting in infection in organs you don't want to be infected. I waited for a year and it spread to the other side of my face

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Guest over a year ago

I realize you asked this a year ago and I was just wondering if you have an answer to it? My son is 1 and we are looking at surgery and I was also wondering about tests involved and surgery recovery etc

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Kristen over a year ago

Just wondering if a solution was found my daughter has had surgery twice and a lump develops every time she get sick. I'm fed up and don't know what to do anymore

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Guest over a year ago

I'm long overdue for surgery and planning to go to the hospital next week. My questions are: How long of a hospital stay was there after the surgery? How well did the scar heal? Mine is the size of a grapefruit as well. I've had mine for 2 1/2 years. It showed up after I slipped and fell on a wet patio that had inside floor tiles installed. It's really painful now and I've gone through 800 aleve in the past 3 months. Thanks

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Guest over a year ago

My 10 yr old son is going to have surgery next week on his first branchial cleft cyst. How was the scar on your daughters face? Is it still very visible? What length?

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Guest over a year ago

I posted this 3 months ago, then 3 days before surgery was told that there is an alternative treatment option (not by a doctor, by my son's hair stylist) under the broad name of sclerotherapy (google sclerotherapy for lymphatic malformations). Another client of hers with a bone cyst had been traveling to Ohio's Nationwide Children's Hospital where Dr. Shiels & Dr. Murakami are injecting the cysts with phenemal results - google their names and lymphatic malformations. My insurance turned down any non-emergency treatments outside of California, but when I looked at Dr. Shields research again, I noticed that his article was referenced by 23 other sources, including doctors in the US (Boston, Michigan and California). Dr. Huy Do at Stanford, California took my son on, gave him an injection under full anesthesia and we hope the cyst will completely go away - without a scar and zero chance of injuring his facial nerve (his cyst was located right on top of the facial nerver). 2 weeks later we already see the cyst shrinking. Will update once we have a final result, but wanted to post this today before anyone else undergoes completely unnecessary surgery like we almost did. I can't believe we almost had my son have a 3 hour surgery, a 2-3 inch scar in his face, with 5% chance of PERMANENT damage to his facial nerve when this can be resolved so easily. Sclerotherapy is a general term, but if you google Dr. Shiels you can find the details. Good luck to you all!

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Guest over a year ago

See my post below. Try googling sclerotherapy and Dr. Shiels or, then see if there's a doctor in your area that does it. Dr. Huy Do injects a different sclerizing agent than the doctors in Ohio, but it's basically the same idea. Let me know if you need help, I've done a lot of research on all of this and am happy to answer questions. Karin

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Guest over a year ago

did u have the surgery during pregnancy or waited until u gave birth?

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Guest over a year ago

Hi my daughter has had her Branchial cleft cyst since she was born. She just had surgery to remove it in June (2015), at the age of 6, because Kindergarten was a little rough for her

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Guest over a year ago

Hi my daughter just has her surgery in June and I just made an appt to have her seen again because the lump is
Coming back. I don't know if we should even attempt a second surgery? I'm just heartbroken because they didn't really highlight the whole "it might return" problem. And I had told my daughter that when she has the surgery it will be gone.

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Guest over a year ago

No, don't have another surgery. As my doctor told me, you have to get every single cell and cut it out or the one remaining cell will multiply again and the cyst will recur. If you do research on the internet, you will see that most cysts come back. Please do your daughter a favor and look up percutaneous sclerotherapy instead. Or, just call the staff of Dr. Shiels at the Children's hospital in Columbus, Ohio. I sent them my son's medical records and they gave me their medical opinion for free. My son ended up having sclerotherapy done in Stanford this June and we just did a CT scan to confirm that the cyst is completely gone. No surgery, just a safe injection - one single one did the trick. The insurance even paid for it. You owe it to your daughter to at least look into it. Email me if you need more info.

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Guest over a year ago

Addendum: Maybe your doctor is scoffing at the idea of sclerotherapy because surgeons love to do surgery and they feel it's effective - often it's a simple surgery for them and they don't care doing it again if the cyst comes back. It's not their child whose scar is getting bigger. My surgeon's colleague had suggested sclerotherapy and the surgeon scoffed at it and moved forward with scheduling the surgery anyway. When I finally realized what this percutaneous sclerotherapy that Dr. Shiels does, is, we canceled the surgery. It saved my son a lot of pain and unnessecary surgery. Doctors are not always right, don't let them discourage you.

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Guest over a year ago

Hi my daughter was born with a branchial fistula/cyst over 24yrs ago, it leaked a clear fluid on and off, at the time doc's advised to leave well alone but keep an eye incase got infected as operation to remove would leave quite a big scar on her neck as against the small pin hole that it was. Maybe we were lucky but she has never had a problem with it other than the occasional leak which she dealt with very matter of factly with clean tissue (only thing I drummed in not to wipe with fingers!!) and as she's got older it leaks less. Obviously take advice from your doc's per your child as these things can differ greatly from person to person but just wanted to let people know that it can be ok to leave it alone with no ill effects most of posts I've read over the years have advocated surgery asap...only becauae it can leave a whacking big scar that may not be neccessary. But obviously discuss with medical professionals this is just my point of view as the mum of.. Well a grown woman now who was born with a hole in her neck'! Lol best wishes

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Guest over a year ago

Nikkilinks107714...Hi, thank you so much for sharing your experience. This is the condition of our almost 2 yr old right now. He has two surgeries and they wanted to do a third and we decided not to. The swelling went away completely for weeks and only the scar was visible and then I noticed the lump returning today. I'm so anxious to hear from you and find out what have you done since a year ago and what has helped. Hopefully this message reaches you successfully. - Kenya

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