Note from Sasha: what Cathy went through and describes below is pretty much an absolute “worst case scenario”. Very few people will ever have the need for the extensive surgical procedure that Cathy underwent, so please don’t freak out when you read this.

Hi everyone!

My name is Cathy and I have been a member of this site since 2002. I found the message boards by accident one day while looking for information on a tailbone pain and, well here I am!

I have had 5 surgeries for this and so far, the fifth one has worked. I had my first surgery in February of 2000 and it’s been an uphill struggle from there. I am not going to go into detail about the four surgeries before this one if you would like to know about that you could email me. I am going to tell you all about my fifth and final surgery. Some of this will be graphic and I am going to let you know about everything from before surgery to finally being healed.

I first consulted with my general surgeon, Dr. Heydari, about the possibility of a fifth surgery in April of 2003. He preformed my third and fourth surgeries and I had total respect for him and his opinions. He told me, at the consult that he was out of ideas and I would benefit from seeing a plastic surgeon for a possible flap procedure. I began my search for a good plastic surgeon in my area, and insurance! I had looked at seeing a colon and rectal doctor but unfortunately, the closest one to me was 500 miles north! I narrowed my search for a plastic surgeon down to two men. One was older and had more experience but the other was younger, fresh out of college and had more knowledge of current medical techniques. I left the decision up to my insurance company. I know that can be scary but they chose the younger doctor. I made my appointment with Dr. Dillon. It was surprisingly easy to get in to see him. I just remember thinking that it better not reflect on his character! I called on a Monday and by Thursday I was in his office.

My mom went with me to all of my doctor’s appointments, thank goodness for her! She stood by me and helped with all the dressing changes, late night sessions in the bathroom and pain filled days I had! So my mom and I were sitting there and first his associate, Sara, came in. She took a medical history and wanted to know all about my previous procedures, when and how they were done. They also wanted the names of the surgeons who performed them. After she left, she spent about 15 minutes with me, we saw the doctor. Now, I was used to seeing the doctor for about ten minutes, max and then leaving. But I sat with and talked to Dr. Dillon for almost a full hour! He came in and started talking to me about the different procedures he used for Pilonidals and what I was a candidate for. He told me that he has worked on thousands of people with a pilonidal but I was the first one he had seen that was going on 5 surgeries.

We decided before surgery that I would have an MRI done of the tailbone area. I was lucky enough to get an appointment for the next week. It was done with and without contrast. All that means is that the first set of pictures was taken and the second set was taken after a dye was injected into my system. A cyst was found with this, way down by my tailbone and it had started to wrap around the bone. So surgery was scheduled for May 28, 2003. We decided to do a muscle flap procedure. My general surgeon would be working on me at the same time also. He did the first part of the surgery, removing the cyst and all infected tissue. They used a blue dye to color the infected area before they removed it and again after to make sure everything was removed this time. Then my plastic surgeon came in and did a muscle flap to close the area. Basically he made an incision on my left buttock and moved the muscle from that side to completely fill in the open area. I was in surgery for almost 4 hours and then in recovery for another 3 hours. This procedure requires a hospital stay.

Recovery

I was first told that I would be in the hospital for 3 to 4 days. Well, I was in the hospital for a total of 8 days! When I woke up from surgery I was totally unable to move my left leg at all. Because of the muscle manipulation the muscle was useless without some physical therapy. I had 4 days of physical therapy before I was able to get up and out of bed by myself. Even then it was difficult because of the wound. After I was released from the hospital I went home to total bed rest. I was not supposed to be up for anything other than to use the bathroom. I was home for just over a week when I started having intense pain in the surgery area. I couldn’t do anything comfortably at all. I ended up making an emergency visit to my surgeon’s office one-day in so much pain nothing; not even pain pills killed the pain. My surgeon opened me up and found a pocket of pus inside the wound area. It was drained and packed immediately. Arrangements were then made for a wound VAC to be placed on the area to help with healing. This was on a Wednesday and I received the VAC on Friday and it was put on Monday.

The wound VAC is a device that uses negative pressure to promote healing in the open area. It is used by forming an airtight seal over the area and “sucking” all the drainage out and pulling new tissue to the top. There is no pain at all during this process. The painful part is getting the seal and the dreaded sponge!! I was prescribed a nurse to come into my home and do the initial dressing and further dressing changes. The first visit was my nurse and a KCI representative. They were both RN’s and had at one time worked in a hospital setting. I felt so confident that this was going to work! The nurse, who I will call Nurse X, first measured the wound and made sure it was clean inside. I had an antibiotic wash that had to be put into the wound prior to placing the sponge in it. The antibiotic wash was painless but it had to be refrigerated so it was cold! So after she did that she measured the sponge and cut out apiece just big enough to fit inside and keep the top from closing. This was painful and remained painful up until the end! The sponge they use is an actual sponge! You can use it to wash your dishes or clean your toilet after they use the part they need. So this sponge is put into the open wound and another sponge is cut to place over the wound to keep the seal from tugging too much on the opening. Then the tube is put on; this is the easiest part of the whole process. It is about a two foot long piece of tubing that is connected to a sticky round part that attaches to the skin over the wound. Then the fun part, the tack-a-derm. This is used to make the airtight seal necessary for suction. Because of where my opening was, right above my rectum, this made getting the seal very difficult.

Nurse X and the KCI representative took almost a full hour getting the seal. By this time I was crawling off the bed and in tears because it hurt so bad. They were not intentionally hurting me but still, it hurt!! So I ended up having to go to my surgeon’s office the next day and having him put the machine on. I also had to get more stitches to make the opening smaller. So now I have this machine on me. It weighs about 20 pounds and is carry-able. I had the VAC Freedom. There are other types but I don’t know about them. So for almost 2 months I had to carry around this 20 black bag! It wasn’t fun but my arms are a lot stronger now! I had a scheduled dressing change every 3 days. The first time Nurse X came over after the machine was on I had taken 2 pain pills, morphine because of the pain in putting it on, about 45 minutes before she got there. She arrived and took the tack-a-derm off, felt like a lot of tape being pulled off your backside then she tried to get out the sponge. I say tried because every time she pulled or even touched it I jumped! It hurt so badly; I can’t even describe it. Even on that much pain medicine I was hurting. She decided to try and just give it one good pull so I bit my lip and said go. She pulled and I screamed! I screamed so loud that a neighbor came over to make sure everything was okay.

Nurse X decided to call my surgeon and I had to go see him to get the dressing changed. Lucky me, they knocked me out for the next 3 dressing changes. I went into an Urgent Care center where my doctor worked and they gave me a sedative to put me under. I don’t remember anything about those dressing changes. The fourth one I went in and they only knocked me out enough to be in La-La land. I don’t remember much but my surgeon told me that during the change I was laughing and talking about going on vacation. The funniest part was when he told me that he asked me to count back from 100 and I started at “Z”!

So back to my story, my surgeon felt that I had healed enough to get the sponge out without as much pain as before. I was instructed to get into the tub about an hour or so before the nurse got there to loosen up the sponge. So three days later I was sitting in a nice hot tub, reading a book and eating breakfast! Nurse X got there as I was getting out and we did the dressing change in just over an hour. Not bad considering it was the first time she had seen me in a few weeks! After that I did the same thing sat in the tub for about an hour and a half and the dressing change wasn’t too bad. After about 4 weeks my nurse left the home health provider she was with and I had another nurse. It was back to square one! This nurse first put too much tack-a-derm on and it pulled all the hair on my leg out, then she would put it too low and I was unable to have a bowel movement! Let’s just say that I was able to train her the way it was supposed to be and everything was okay from then on out!

After seeing her for almost another month I was healed to the point that I could pull the sponge out by myself in the tub. I had also started back to work August 1 and had to schedule these changes before work. It was difficult because according to my insurance I had to be homebound in order to keep the home nurse so we never told my nurse I was back to work! Finally, on August 25, two days before my birthday, the nurse came over and when she saw the size of the opening she called my surgeon and said it was too small for a sponge to go in! My surgeon agreed and said to just put some Panafil on it to keep the area clean. I was ecstatic!! It had been 3 years and 5 surgeries but I was the closest to being totally healed I had ever been! My mom put the Panafil on every day and after 3 weeks the area closed up totally. I have now been closed for 2 weeks and I have not had to wear a pad for one full week and counting! I have started to exercise to make sure the skin does not split open again and I have also really started to eat right.

I would tell anyone who is facing this surgery or the usage of a wound VAC to do it. Although it was painful and a long recovery process it has changed my life. The wound VAC was the best thing that has ever happened to me and I am thankful everyday that I had it and I am now on the road to a full recovery! Please feel free to email me at any time with any questions! Anyone who wants to email me directly can go to the message board and become a member, members can email each other from the boards. Thank you for taking the time to read this “book”, who knows, someday you may face the same thing I did and have something to read.

— CathyK

**Cathy did eventually experience a reocurrence of her abscess and needed further treatment in 2013. You can reach her on the forums for more information, search for CathyK