Pain turned out to be caused by a pilonoidal cyst

Jennifer. Singjenn@aol.com

Because this story is long, here is a brief summary from Jon: Jennifer had bad coccyx pain for years, and medicines and a cortisone shot didn't help. Her doctor then removed the coccyx. Afterwards the wound opened right up and became infected. Trying to heal it up was a very long and very painful process. A second surgery didn't even help. Eventually she went to another doctor, who referred her to a surgeon. This surgeon saw straight away that there was a pilonoidal cyst in the hole. He removed the cyst, which was the size of a tomato. Jennifer's original pain has now gone, her wound is closed, and she is doing fine.

Jennifer's story:

I had been having extremely bad tailbone pain for about 6 years. The pain was sharp and piercing at the top of my butt crack. There were times when I could barely sit or even lay down. When I would move the pain would get worse. I tried all kinds of pain medicine but nothing worked. I went to my family doctor when I was about 16. he told me it was because I had "no padding on my butt." I thought that was not right, but I left it alone. Shortly after I got married last May the pain got worse. It was so unbearable I finally went to a doctor again about the pain. He started about an inch above my tailbone and he said that when he got to the right place to tell me. I didn't have to tell him because when he pushed on it I screamed. He felt really bad for hurting me. He thought for a minute and told me he had no idea what was wrong, but he wanted to get x-rays of it. Then the doctor referred me to an orthopedic surgeon. I brought my x-rays with me. He looked over them and didn't say all that much about them. He asked me when I hurt and I told him. Then he said there was a few things we could do for the pain. Surgery, which was a last resort, cortisone shot, an anal exam in the office, or manipulation under anesthesia. he did the anal exam in the office to see if it was mobile. He said he couldn't tell because I was tense. The only other thing he could do right then was the shot. Me being a scardy cat, I didn't want the shot. But I decided it might help me and I was so wanting to get rid of the pain. The needle going in didn't hurt too bad. it was him injecting the medicine that made me scream my head off!!!!!!!! OUCH!!!! I took a minute to compose myself then I hobbled out of the office and into my car. He asked to see me again in two weeks to see if the shot had helped. The next two weeks I think I was in more pain then I was before the shot. I went back on October 2nd. I told him it didn't help at all. He said the only other thing we could do was manipulation under anesthesia or the surgery. We talked about it for a little while and we decided that I would feel more comfortable with having the surgery. I felt that manipulation would be a waste of time. So surgery was scheduled for October 17th.

The morning of surgery I was excited to finally be getting rid of my pain, even though I knew it would be a while before I could sit normally. My parents came up for the surgery ( I was living in VA at the time). I was on so much medicine that it made me sick. I threw up the day after about 5 times and the next day was a lot more. So they called me in some compazine for the nausea. My daddy left a day earlier then my momma did. She stayed to help my husband with supper and things. The Friday morning after my surgery everything was fine so she decided to make the 5 hour trip home. That night I began to feel really strange. Around 8:30 was when it all started. I was laying on my side on the couch when I realized I couldn't get comfortable. I thought it was just the couch so I went in the bedroom to lay down. He asked me where I was going and I said, "Just to lay down." After laying down on the bed a few minutes I realized what was wrong with me. My muscles wouldn't let me relax and I was tensing up. I walked back into the living room where my husband was and I told him that I knew what was wrong. So I thought the shower would help. He walked me back to the room and turned on the shower water. We walked over to the center of the room so I could get undressed. I started to walk and from my knee caps up my legs were "stuck" together and the bottoms of my feet pointed outward. I got scared because I couldn't walk. I wasn't in pain but it felt really strange. My husband asked me what was wrong and I started to cry because I didn't know. All I knew was that I couldn't walk. He got me to the bed and he called a friend who lived in the same building as we did. She ran over in about 3 seconds. By the time she got there my whole body was shaking, my mouth was drooping and I could barely open my eyes. She sat on the bed with me and tried to keep my arms still. The more she held me down the more I seemed to shake. Then My husband called my momma. He told her what was wrong and she told him to call the doctor. He called the doctor and he said it was a reaction the medicine I was taking and that it should go away. Soon after it got worse so he got ready to take me to the hospital. It was a task getting me to the car. We weren't far from the ER at all. Luckily, they weren't busy and they helped me right away. it took about one minute for them to get the IV in me. They were really fast that night. They didn't know for sure what was wrong because they hasn't asked me yet, they just knew I needed an IV. Soon after the ER DR came in and talked to my husband to find out what I was taking. When my husband mentioned the compazine the DR told him that was what was making me do the things I was doing. It turns out that I was having a distonic reaction. Visually it was like a mix between a stroke and a seizure. For me, I felt no pain, just a lot of uncomfortableness and tightness of the muscles and fear as to why I couldn't stop shaking. They gave me some medicine called cogenten. It worked almost instantaneously. I felt amazingly better. They just told me to stop taking compazine and I should be fully recovered in a couple of days. I went to the DR the next week for a checkup and told him we went to the ER. He explained that compazine effects the nervous system and that's why I had the reaction.

We decided to go home (NC) for a few days. We left that Friday. I was doing real good, just a lot of oozing from the wound. That Tuesday night (Halloween) I went to use the bathroom. After I while I looked down in the commode and it was full of blood. When I wiped, I had blood and blood clots on the toilet paper. it scared me. I called my husband in to help me get up then he took me in the room and looked at it. He told me it looked like it had come open. So we called the ER and they told me to come in to have it checked. The DR's looked at it and said to my husband, "Have you seen this?" And he told them he had just looked at it. The he went over and looked at it again. They said that it was open and that I needed to have a surgeon look at it the next day. They were a little confused to how it looked. They packed it for me and we went home. The next day we went to the doctor they referred me to. He said that it had split open but that there was only one stitch holding it together (The doctor used absorbable stitches). He snipped that stitch and it split open all the way down the where the bone was . . . .about 3 1/2 inches. he told me I needed to go back to VA ASAP to see my doctor and that he was going to pack it. I said Ok , because the nightn't realize how important my butt was to my walking until this happened. I was in tremendous pain. He started to pack it. I started to scream because it hurt like crap! I was in so much pain I couldn't take it. After about 15 minutes he finally finished. It was all I could do to walk. The next morning we left at 7 am so we could get back in time to go to the DR in VA. When I saw him he told me I had an acute infection. He told my husband that it would need to heal from the inside out and that he would have to pack it once, if not twice a day. He sent us home with a bunch of saline solution, gauze, long Q-tips, and tape. That night JR (my husband) was going to change the gauze. That began a long journey. He barely got 1/4 of an inch out and I wouldn't let him touch it anymore. We fought about it and I told him there was no way I was going to let him or anyone else do it. He was so upset for hurting me he cried. he called his momma and told her he couldn't do it. That someone else would have to. So we went to the ER, again. I was in a tremendous amount of pain. They gave me an IV and then some morphine. After about 10 minutes I asked the nurse when the medicine was supposed to start working. She said, "It should have already, do you still hurt?" And I said that I did. They gave me something else that was supposedly stronger but it didn't help either. They told me to go back to the doctor the next day. So we did, again. He said that I had to have it packed and that if I didn't it wouldn't get better. I was in tears of the thought of having to do that every day. he said that they could have nurses come every day. So we decided to do that.

The next morning at 8 am, the nurse came. My parents came back up to help JR with supper and for support. We went in the back bedroom so she could change the gauze. I laid down on the bed and she leaned over me to grab the gauze. I asked her if I told her to stop if she would. She said yes. She leaned over me again and I started crying and wouldn't let her do it. After about 5 minutes of trying to talk me into she said, " We won't do anything unless we have your permission." Then I told her I didn't want it done. But my husband chimed in and said that it had to be done and to let her go on and do it. She grabbed it and pulled about 1/4 of an inch out. I screamed STOP sooooooooo loud. the she remembered she needed her scissors and they were in the living room. So she went in there to get them My mama asked if she was done and the nurse said, "No, I barely got any out." So my momma came back there to help. The nurse started and I tried to get away so My momma had to hold me down. It was awful. My daddy had to leave because he couldn't take the screaming. Finally she was done. Then for the next few hours I was in tremendous pain. Then it would get better. Lisa was the first nurse that came to see me. I had several different nurses; Lisa, Diane, Joanna, Valerie, and Bev. Some days were better then others because the different nurses did things different from each other. When Joanna came she was awful. She was really nice, but she did the packing too slow. I remember one day before she started I told her that if I asked her to stop if she would. She said she would. She started the packing and I couldn't take it. I yelled at her to stop. She didn't stop. I yelled again..and she still didn't stop. Then I yelled, "You said you would Stop!" I started kicking. The I yelled at her, "You're too slow. STOOOOP!" But she wouldn't. I knew they weren't meaning to hurt me, but since they were the ones doing it, I screamed at them. After the nurses left it would start all over again . . . the next thing I knew it was time for them to be back.

I was put on antibiotics for the infection. Only after a week of being on it the doctor took me off, even though I had green stuff still coming out. He was asked several times to do a culture and he refused to do it. Even the nurses that came to see me said it would be a good idea. But he would not do it. I went to the doctor every Wednesday during the packing. We did the packing from November 4th to December 12th. I had gone to the DR for my regular visit and he asked me what I wanted to do. I wanted it closed up. I couldn't take the stress and the pain of having it packed every day. It was really taking a toll on me and my family. So he told me I could have it cleaned out and restitched or have a whirlpool treatment or keep doing the packing. So we took a few days and decided to do the surgery. it was scheduled for December 13th. it went well. He used unabsorbable stitches this time and thicker stitches. I went in December 28th to get them removed. I had about 15 stitches. He took them out and it fell open again. But it wasn't as deep as it was before the surgery. It was about 1/2 an inch. he told me to clean it out twice a day with the shower. he said, its gonna ooze some and its gonna bleed some but everything should be fine. He told me to come back in a month and it should be healed by then.

So we scheduled an appointment for January 26th. I went back and it was the same as far as the naked eye could see. He sent me home and said come back in three weeks. I went back and it was the same. So he gave me a cream called silvadene and told me to come back in three weeks and it should be healed. I used the cream for the first time and I had green stuff come out. So I called the DR's office just to see if that was supposed to happen. The nurse called me back and said that the DR wanted to see me to make sure everything was fine. I went in the next day and he said everything was fine. I still had green stuff coming out. So I didn't use it as often. I went back to my next appointment and the same thing. "It looks fine. Come back in three weeks and it should be healed." It wasn't. And I still had my original pain.

The Sunday before my next visit I had a problem with my wound. I was using the bathroom and it began to bleed tremendously. It was pouring out like water does out of a faucet. I had blood clots and it scared me to death because I couldn't get it to stop. My husband took me to the ER. When I came back for my next visit I told him about two days before and how much it bled. He said, "Well, I told you it was going to bleed." I said, "No, it was a lot of blood and I had blood clots, too." He said, "Well when you see blood on gauze its gonna look like a lot of blood." I said, " Listen to me, I didn't have gauze in, I was using the bathroom. The blood was pouring out like water out of a faucet." He didn't say much after that . . . he kind of stumbled around his words. Then he told me that he was leaving. I didn't know what he meant. But he said he was leaving that practice. I asked where he was going and he was hesitant to tell me. But he said Northern Virginia. I was very suspicious, because all of a sudden he was leaving. Then he told me, " Now it's mainly wound management and you might need to see a plastic surgeon who might could help. I can refer you to someone." The I told him I was leaving for a month while my husband was out to sea. He asked to see me one last time before he left. We made an appointment but I didn't go because I was here in NC.

I made an appointment to see my family doctor in NC for a second opinion. I told him about the bleeding I had had recently and he told me it was a blood pocket that should have been drained. He said it was odd that I was told to leave it with no dressing on it. He looked at it and said from what he could tell it looked ok but wanted me to put neosporin on it and come back in a week. The next week I went back to him. He said he wanted to refer me to a general surgeon who he felt could do a better job then he could.

The next week I went to a general surgeon. He took one look at it and said, " You've got a hole at the top of the wound, and there is a pilonidal cyst in there. We'll have to put you to sleep and cut out around it and stitch it back up. If we don't do that you will not heal and that's probably why you still have your original pain and it has been there from the beginning." He put me on a strong antibiotic to keep infection away and asked to see me back in two weeks. I went back after about two weeks and he explained how the surgery would work. He drew a picture of the wound for me and showed me where the hole was. He said they inject blue dye into the hole and watch where it goes. And where ever the blue dye goes, that is where the "bad part" is. They cut all of that out plus some and then sew it back up. We scheduled the surgery for April 11th. It was my third surgery for tailbone problems. I got all my records from the nurses, DR's visits, and ER. So many things were overlooked and I feel he neglected to do certain things so I am trying to sue him.

SURGERY UPDATE: While I was in the recovery room after my surgery, my husband and my sister came in and told me what the doctor found. They told me "he got it all out. It was the size of a tomato. he had to scrape all the way down the bone." I was so upset at my first dr. I started to cry . . . I was back at the beginning again and I was so angry. I could not believe how my other doctor could miss something like that. It really upset me. I was so tired of all this. After about another hour I began to come out of anesthesia. I really wanted to leave so they let me go home. The next two days were so amazingly different from the first days, even weeks after my first two surgeries. The difference as like night and day. I was able to walk, but very slowly. I felt great and didn't need much pain medicine. When I went back to get the stitches taken ut I was so nervous. I had about 15. He took them all out and it didn't fall pen. it was a miracle!!!!!!!!! All of the before would have not happened if y first doctor had found the cyst.

LAWYER UPDATE:

It is my opinion that lawyers are incompetent. The first lawyer I contacted told me I couldn't base a medical malpractice case on something that a doctor had just told me. I don't know what she was talking about, because I was basing it on what the doctor didn't do, that he should have. The second lawyer I talked to, wanted to take my case. But due to me being out of work since last October and medical bills, we can't afford to pay for the doctor's evaluation that is required to proceed for a medical malpractice case. So I decided to look for another lawyer and see if there was something else that could be done. I found another lawyer a few days ago and sent my story (all of the above this part). I got a letter today saying they could not help me, and they hoped I wouldn't be disappointed. I am so frustrated. I can't believe that you have to have almost $2,000 to sue a doctor for wrong doing. If we didn't have all the bills and things we could afford it, then again, we would have no reason to sue. I am very frustrated because I can't get any help and we don't have the money.

UPDATE ON ME:

I am doing fabulous. My original pain is gone and my wound is no longer open. I owe it all to my latest doctor and to the healing power of the Lord. Without that, I have no idea where I would be now. I still want to sue my doctor. As of now, I have a little less then two years to sue him. Once two years is up, I can't do anything. I have wanted so badly to call my first doctor and ask him if he has any idea what he put me through, but I know it won't do any good, plus, I don't know where he is. I have learned a lot from this ordeal. The next time I go to a doctor it will be someone I have been to before, and that I trust. I have also learned that I am not as strong as I thought I was and that I need to work on that. Today, I still get choked up when I think about what I have been through. I knew my husband loved me, but what he went through and did for me was amazing. I had so much help from him and he made me feel so loved. I know that everything that happened was not the doctor's fault, but the point is, is that he diagnosed me wrong, and failed to do certain test to determine the cause of the pain and infection. To anyone who has pain like I did, please talk to your doctor about the possibility of a pilonidal cyst. They don't show up on x-rays. I would hate for this to happen to someone else. If you are lucky, your doctor won't be as ignorant as mine.

Updated 2001-06-24

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