I received an email from a patient’s mother last week:
I’m hoping to get an appointment for my son who has been suffering for over 2 years, first from pilonidal disease, and now from the consequences of failed surgery that made his problem far worse. I’m just perplexed that surgery would make a bad problem a terribly bad one?
After a year of trying to figure out what was wrong with my son (doctors thought he had anal fistulas or Crohn’s Disease), he was finally diagnosed with Pilonidal Disease 2 years ago. He had surgery and I was told by the surgeon that he had removed 10 cysts. It was one of the worst cases he had seen. Now I understand that this was a clue that the surgeon didn’t understand pilonidal disease, as there is no cyst – it’s just an infection! The wound was left open and my husband and I had to pack it daily despite my son’s misery. The poor kid nearly screamed every time we changed the dressing. The surgeon was confident that my son would be fine and that with time the wound would heal. We packed and prayed and waited and……the wound didn’t heal. We had twice weekly appointments for months and the wound didn’t get any smaller. The surgeon scraped and burned the wound – more pain, no healing. We tried to do everything right, but it wouldn’t heal.
So, during an appointment that we had 3 months after surgery, the surgeon threw up his hands and said that he couldn’t help our son any more. He said that our son was a poor healer, he didn’t comply with his instructions, and he couldn’t do anything more for him. The surgeon sent us to a wound clinic. He might as well have sent us to a dungeon. For 6 more months we diligently drove three times a week, 30 minutes to the clinic, spent an hour and a half there, and drove 30 minutes back home. Almost 8 hours a week. We were told that this would heal our son, so we tried to be optimistic. When not at the wound clinic, our son was instructed to be home on bed rest, per doctor’s orders. No school, no sports, no social interaction with friends. Home schooling.
Well, after countless hours, multiple several hour trips/wound clinic visits, tremendous emotional stress, the wound looks maybe the same, maybe worse than it did right after the operation.
Our son is a sophomore in high school and not only is he missing school, but social interaction as well. He has started to become depressed, especially since his wound his healing SO slowly. He needs to get well and get back to school.
I really hope you can help us. We have been dealing with this for almost 2 years now and I just want my son to get well. This poor kid… He needs his life back. We need our family to be happy again.
Poor kid – I completely agree. This is a tragic situation that is happening all over because of an incomplete understanding of the cause and the proper surgical treatment of pilonidal disease.
Please do your research. Find a surgeon who is very experienced in the cleft lift procedure. That is what you need to get your love one’s life back.
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