Post by pilonidalstories.com on Sept 4, 2017 7:21:27 GMT
My first flare-up was in the summer of 1996 in France. I was 16, and I couldn't understand why my butt was constantly sweating. I stayed inside pretty much all summer, thinking the heat was causing it. When I got home to the states, my mom, who worked for a general surgeon, took me to her boss for help. They diagnosed the pilonidal cyst and did an excision soon thereafter. They sutured the wound. After the surgery, I felt fine after only a few days of pain. I was totally healed and back to normal within weeks. It was as if nothing had ever been wrong. I didn't have any problems between 1996 and 2008.
Sometime in 2008, I started noticing drainage every now and then, although there was no visible sinus or bump (There was no bump the first time either. My cysts have always been completely internal.). I started using hydrogen peroxide on the area regularly, and the flare-ups would come and go. They didn't get terrible until the summer of 2011. I had my doctor refer me to a colon and rectal surgeon in Ohio. When the surgeon examined the area, she said I couldn't possibly have drainage, because she saw no evidence of a sinus. She said that if I did have a cyst, it must be tiny, because everything back there looked fine. I insisted that it was not, and she agreed to operate. (By the way, I've always wondered whether it is possible for the cyst to drain through the rectum, because this would explain my lack of openings).
She chose to use healing by secondary intention, telling me about the lower recurrence rate with this technique. She also told me the healing time would be two to three weeks. When I woke up after the surgery, she told me the cyst she removed was enormous. Then commenced three of the worst months of my life -- this is how long the wound was open. It's incredibly depressing being bed-ridden for that long. I was also in excrutiating pain, enough that I was concerned either the cyst had not been entirely excised or something had gone wrong in the surgery (maybe she'd hit a nerve?). Since the surgery, my left leg has fallen asleep often and unpredictably. Pain shoots down both my legs from my spine. Now, seven months post-op, my tailbone, lower back, and surgery site hurt far more than they ever did before the surgery. I arranged many extra follow-ups with the surgeon to complain that something is definitely wrong, but she (and her colleague; I asked to see a second person after awhile) offered no help. They insisted from the start that the pain in my legs and numbness in my left leg couldn't possibly have anything to do with the surgery. They compared the pain I'm experiencing to a "stubbed toe." For two months of the wound being open (wide open. huge.), the first surgeon wouldn't give me pain killers -- she acted as if I were drug seeking or becoming addicted! Trust me, I don't enjoy painkillers or all the weight gain that comes with them. For two months of hell, I took only ibuprofen for the pain. Back to the point, though: there's still something very wrong. My regular doctor has ordered a soft tissue MRI to see if the cyst is back (or if it wasn't completely removed). Although I don't like the idea of figuring out what to do if there IS a cyst in there, I'd much prefer that to the mystery pain. The surgeons say there's no WAY there's a cyst in there. Why? Because they've looked at the neatly healed wound on the outside, and it looks good. Because they see no bump or sinus tracts (there never were!). I'm crossing my fingers that the problem is still the cyst and not some sort of longterm tissue damage or damage to my spine. If it is a cyst, I'm thinking of making an appointment with the famed Tom Bascom. Wish me luck. One last thought -- I strongly recommend against using the secondary intention healing method. From the medical studies I've read on Google Scholar, it looks like even with the lower recurrence rate, suture is better, because SEVERAL sutured surgeries will suck away less of your life than that God-awful open wound. However, if cost is one of your primary concerns, I'm not sure how the two surgeries compare in that regard.
Oh...one more thing: I have great hygiene, and I'll bet a lot of you do. Although I'm sure poor hygiene would exacerbate a cyst through a sinus, I seriously doubt that hygiene is the primary culprit behind pilonidal disease. I also have serious doubts about the theory that hairs found in cysts are coming from outside the body. Imagine the pounds of pressure, time, and particular angle necessary to drive a single hair through skin, or even through a pore. Perhaps this would be believable for someone who left the debris in their crack unagitated for months at a time, but for a normal person who showers and scrubs daily, the physics of it just don't compute.
Sometime in 2008, I started noticing drainage every now and then, although there was no visible sinus or bump (There was no bump the first time either. My cysts have always been completely internal.). I started using hydrogen peroxide on the area regularly, and the flare-ups would come and go. They didn't get terrible until the summer of 2011. I had my doctor refer me to a colon and rectal surgeon in Ohio. When the surgeon examined the area, she said I couldn't possibly have drainage, because she saw no evidence of a sinus. She said that if I did have a cyst, it must be tiny, because everything back there looked fine. I insisted that it was not, and she agreed to operate. (By the way, I've always wondered whether it is possible for the cyst to drain through the rectum, because this would explain my lack of openings).
She chose to use healing by secondary intention, telling me about the lower recurrence rate with this technique. She also told me the healing time would be two to three weeks. When I woke up after the surgery, she told me the cyst she removed was enormous. Then commenced three of the worst months of my life -- this is how long the wound was open. It's incredibly depressing being bed-ridden for that long. I was also in excrutiating pain, enough that I was concerned either the cyst had not been entirely excised or something had gone wrong in the surgery (maybe she'd hit a nerve?). Since the surgery, my left leg has fallen asleep often and unpredictably. Pain shoots down both my legs from my spine. Now, seven months post-op, my tailbone, lower back, and surgery site hurt far more than they ever did before the surgery. I arranged many extra follow-ups with the surgeon to complain that something is definitely wrong, but she (and her colleague; I asked to see a second person after awhile) offered no help. They insisted from the start that the pain in my legs and numbness in my left leg couldn't possibly have anything to do with the surgery. They compared the pain I'm experiencing to a "stubbed toe." For two months of the wound being open (wide open. huge.), the first surgeon wouldn't give me pain killers -- she acted as if I were drug seeking or becoming addicted! Trust me, I don't enjoy painkillers or all the weight gain that comes with them. For two months of hell, I took only ibuprofen for the pain. Back to the point, though: there's still something very wrong. My regular doctor has ordered a soft tissue MRI to see if the cyst is back (or if it wasn't completely removed). Although I don't like the idea of figuring out what to do if there IS a cyst in there, I'd much prefer that to the mystery pain. The surgeons say there's no WAY there's a cyst in there. Why? Because they've looked at the neatly healed wound on the outside, and it looks good. Because they see no bump or sinus tracts (there never were!). I'm crossing my fingers that the problem is still the cyst and not some sort of longterm tissue damage or damage to my spine. If it is a cyst, I'm thinking of making an appointment with the famed Tom Bascom. Wish me luck. One last thought -- I strongly recommend against using the secondary intention healing method. From the medical studies I've read on Google Scholar, it looks like even with the lower recurrence rate, suture is better, because SEVERAL sutured surgeries will suck away less of your life than that God-awful open wound. However, if cost is one of your primary concerns, I'm not sure how the two surgeries compare in that regard.
Oh...one more thing: I have great hygiene, and I'll bet a lot of you do. Although I'm sure poor hygiene would exacerbate a cyst through a sinus, I seriously doubt that hygiene is the primary culprit behind pilonidal disease. I also have serious doubts about the theory that hairs found in cysts are coming from outside the body. Imagine the pounds of pressure, time, and particular angle necessary to drive a single hair through skin, or even through a pore. Perhaps this would be believable for someone who left the debris in their crack unagitated for months at a time, but for a normal person who showers and scrubs daily, the physics of it just don't compute.