Help for my 12 yo daughter

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roro2022

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I am writing in regards to my 12 year old daughter....In July we discovered that she had 2 pilonidal pits. I was terrified....as I had never ever heard of pilonidal cysts, sinus or pits. She underwent a trephination in August. It has been 10 weeks and she just had another pilonidal cyst flare up which has caused a new pit to form. I should say that the cyst turned into an abcess and seeing the drainage is quite terrifying as well. We contacted her surgeon and she went back to see them. She is on antibiotics....the cyst burst on it's own so it was not lanced at the office. The doctor said she is a good candidate for cleft lift procedure. We are not exactly happy about this. We would like to avoid another surgery since the cleft lift is a more invasive surgery.

We live in North Carolina but will be moving to Virginia soon. Any advice or help is welcome...thank you so much!
 
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diseasedone

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roro2022 said:
I am writing in regards to my 12 year old daughter....In July we discovered that she had 2 pilonidal pits. I was terrified....as I had never ever heard of pilonidal cysts, sinus or pits. She underwent a trephination in August. It has been 10 weeks and she just had another pilonidal cyst flare up which has caused a new pit to form. I should say that the cyst turned into an abcess and seeing the drainage is quite terrifying as well. We contacted her surgeon and she went back to see them. She is on antibiotics....the cyst burst on it's own so it was not lanced at the office. The doctor said she is a good candidate for cleft lift procedure. We are not exactly happy about this. We would like to avoid another surgery since the cleft lift is a more invasive surgery.

We live in North Carolina but will be moving to Virginia soon. Any advice or help is welcome...thank you so much!
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I am sorry to hear your daughter is going through this at 12 years old. It is a frustrating disease to say the least.

There is a surgeon's hall of fame section on this forum where you will see the names of trusted surgeon's that perform procedures such as cleft lift. You might give that a try.

My background..I am a 41 year old woman suffering from this disease since 2018. I just had a Limberg flap surgery (had i&d and one excision before) performed last week because that is what made the most sense in my situation.
 
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TRRIND

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roro2022 said:
I am writing in regards to my 12 year old daughter....In July we discovered that she had 2 pilonidal pits. I was terrified....as I had never ever heard of pilonidal cysts, sinus or pits. She underwent a trephination in August. It has been 10 weeks and she just had another pilonidal cyst flare up which has caused a new pit to form. I should say that the cyst turned into an abcess and seeing the drainage is quite terrifying as well. We contacted her surgeon and she went back to see them. She is on antibiotics....the cyst burst on it's own so it was not lanced at the office. The doctor said she is a good candidate for cleft lift procedure. We are not exactly happy about this. We would like to avoid another surgery since the cleft lift is a more invasive surgery.

We live in North Carolina but will be moving to Virginia soon. Any advice or help is welcome...thank you so much!
Click to expand...
Hello
I was worried about the lift too. Felt it seemed major. My son had to ex
roro2022 said:
I am writing in regards to my 12 year old daughter....In July we discovered that she had 2 pilonidal pits. I was terrified....as I had never ever heard of pilonidal cysts, sinus or pits. She underwent a trephination in August. It has been 10 weeks and she just had another pilonidal cyst flare up which has caused a new pit to form. I should say that the cyst turned into an abcess and seeing the drainage is quite terrifying as well. We contacted her surgeon and she went back to see them. She is on antibiotics....the cyst burst on it's own so it was not lanced at the office. The doctor said she is a good candidate for cleft lift procedure. We are not exactly happy about this. We would like to avoid another surgery since the cleft lift is a more invasive surgery.

We live in North Carolina but will be moving to Virginia soon. Any advice or help is welcome...thank you so much!
Click to expand...
Hello
I also was worried about the Clift lift surgery. Felt like it seemed major. My son at two excisions that never healed. 3rd operation was the lift and it was not major like I feared, if you chose one of specialists that know the Clift lift. Do your research on the doctor! We had to travel to get to the Dr but well worth it.
 
S

Snowcloud27

New Member
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roro2022 said:
I am writing in regards to my 12 year old daughter....In July we discovered that she had 2 pilonidal pits. I was terrified....as I had never ever heard of pilonidal cysts, sinus or pits. She underwent a trephination in August. It has been 10 weeks and she just had another pilonidal cyst flare up which has caused a new pit to form. I should say that the cyst turned into an abcess and seeing the drainage is quite terrifying as well. We contacted her surgeon and she went back to see them. She is on antibiotics....the cyst burst on it's own so it was not lanced at the office. The doctor said she is a good candidate for cleft lift procedure. We are not exactly happy about this. We would like to avoid another surgery since the cleft lift is a more invasive surgery.

We live in North Carolina but will be moving to Virginia soon. Any advice or help is welcome...thank you so much!
Click to expand...

It’s definitely not a nice thing to have at that age, but if it’s any reassurance, I have had Two operations - a standard one that was stitched which then got infected and was left open and packed (this was done for a year before they realised it was unsuccessful) and then I’m currently healing from the flap/ cleft lift surgery. The second surgery is definitely the better option. I have one little bit that’s being delayed in healing at the surface level but I’ve read that that’s not uncommon. So I would definitely go for this option if you have the choice.

I first noticed my pilonidal sinus about the age of 15 and because it then went away I was told not to have the surgery (I’d had lots of flare ups but they would go away with anti biótics). So I cancelled the surgery as advised and then when I was 19 it came back and popped and I had it oozing for 2 years (covid hit which delayed me having an operation). This long wait meant my sinus got even bigger which is likely why the first op failed as they weren’t prepared for it to be that big. So hopefully the fact she’s getting it now will minimise the chance of it worsening without you being aware of it. Hopefully that’ll mean she’ll have even better / quicker luck at healing. I hope some of this has given you some reassurance, but I can sympathise with how worrying this is and overwhelming to deal with especially at her age.
 
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MarieS

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TRRIND said:
Hello
I was worried about the lift too. Felt it seemed major. My son had to ex

Hello
I also was worried about the Clift lift surgery. Felt like it seemed major. My son at two excisions that never healed. 3rd operation was the lift and it was not major like I feared, if you chose one of specialists that know the Clift lift. Do your research on the doctor! We had to travel to get to the Dr but well worth it.
Click to expand...
Hi, we are going through the same @TRRIND, how old is your son?
 
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