Pilonidal Cyst Story

[Unfortunate]

Hi Everyone, I am in the same boat currently, I have had multiple cysts in the past two years and I have not been siting consistently for about 3 years. I have had two surgery's thus far and both have pretty much been the same. The First Surgery which was in Jan 2021 removed about 2-3 cysts I don't remember how many but the doctor was surprised when he operated on me. We did Gauze packing for about 2 months and the month after the packing another cyst showed up. It also got infected just like the first one, however it was not nearly as bad in terms of pain. We did another surgery in Sept 2021 and this time he removed everything the pockets and the tracks, and left a crater the size of two oranges in my back. I was in the hospital for a week awaiting a vacuum pump to speed up the healing time. I was on the pump for about 2 months, and it was hell it would need to be changed 3 days a week and required me to be heavily medicated so that they can fit the sponge in to suck up all the moisture. Then After getting off the pump my back began to open, however that was only due to the skin and tissue on the top being super weak because of the vacuum pump, it normal. I had a pencil size hole left in January, and Unfortunately that's where it all the progress stopped. In March I had another cyst it built up and then it blew the entire upper side between the buttocks open, and then it started leaking everywhere including the pencil size hole. We have been using aqualcel for 2 months not a ton of progress, as of right now I have two wounds, one at the top and one at the bottom near the anus. It heals occasionally but for the most part reversed course, the top was looking good up until a week ago, and then the bottom started healing and then the top just started to destroy itself.

If anyone has any advice I will be down to listen, I am only a 19 year old male and have been dealing with the surgery side of it within the last year, According to my surgeon have had the cysts way longer than a year, most likely I had the first one in 2020, and due to the pain tolerance I have on my body I only felt slight discomfort sitting on my tailbone.

 

[diseasedone]

I am sorry you are going through this. The open wound surgeries have high recurrence rates unfortunately.

From what I understand, flap surgeries are recommended for recurrent pilonidal cysts. There are various ones out there such as cleft lift, Limberg flap, and Karydakis flap.

Has your surgeon brought up these as possibilities?

 

[Kidhaspilonidal]

Hi Everyone, I am in the same boat currently, I have had multiple cysts in the past two years and I have not been siting consistently for about 3 years. I have had two surgery's thus far and both have pretty much been the same. The First Surgery which was in Jan 2021 removed about 2-3 cysts I don't remember how many but the doctor was surprised when he operated on me. We did Gauze packing for about 2 months and the month after the packing another cyst showed up. It also got infected just like the first one, however it was not nearly as bad in terms of pain. We did another surgery in Sept 2021 and this time he removed everything the pockets and the tracks, and left a crater the size of two oranges in my back. I was in the hospital for a week awaiting a vacuum pump to speed up the healing time. I was on the pump for about 2 months, and it was hell it would need to be changed 3 days a week and required me to be heavily medicated so that they can fit the sponge in to suck up all the moisture. Then After getting off the pump my back began to open, however that was only due to the skin and tissue on the top being super weak because of the vacuum pump, it normal. I had a pencil size hole left in January, and Unfortunately that's where it all the progress stopped. In March I had another cyst it built up and then it blew the entire upper side between the buttocks open, and then it started leaking everywhere including the pencil size hole. We have been using aqualcel for 2 months not a ton of progress, as of right now I have two wounds, one at the top and one at the bottom near the anus. It heals occasionally but for the most part reversed course, the top was looking good up until a week ago, and then the bottom started healing and then the top just started to destroy itself.

If anyone has any advice I will be down to listen, I am only a 19 year old male and have been dealing with the surgery side of it within the last year, According to my surgeon have had the cysts way longer than a year, most likely I had the first one in 2020, and due to the pain tolerance I have on my body I only felt slight discomfort sitting on my tailbone.

Hang in there. i would never have imagined such a “one step up, two steps back” healing process, so incredibly frustrating. Lots of folks to support you on this forum. If you are able to consider the cleft lift, I’d highly recommend it. There are a handful (maybe more) of surgeons who are able to take on the tough cases and turn lives around.