MY STORY
What you are about to read is a personal experience I went through with a particular surgery I had. I must warn you this is very detailed and long... It was written in May 2001. _______________________________________________________
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 medication, but nothing worked. I even went to my family doctor when I was about 16. He told me it was becasue I had "no padding on my butt." I thought that was not right, but I left it alone. What did I know?
Shortly after I got married last May, the pain got worse. It was so unbearable.
I finally went to a Dr. again about the pain. I told him what kind of pain I was having. He said he wanted to feel my lower back/spine area, he began pushing with two fingers slowly down my spine. He said that when I got to the place that hurt to let him know. I didn't have to tell him...because when he pushed on it I screamed. he stopped pushing immediatly, I guess my yelling starteled him. 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. My x-rays came back and he said he didn't see anything abnormal, so he 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. I didn't want either. He left the room to give me a little time to think about it. 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. He left teh room again so I could decide. I decided it might help me and I was sooooo 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!!!! The nurse looked confused while I was screaming. He said it should feel better in a couple of days. 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.
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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). The surgery went well so they let me go home after I woke up. I was on
so much medicine that it made me sick. I threw up the day after about 5 times and the next day alot more. 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 decided to go lay down in the bedroom. My husband 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. For some reason, my muscles wouldn't let me relax and I was tensing up. The more I tried to relax the straighter my legs got. I walked back into the living room where my husband was and I told him that I knew what was wrong. I was calm at this point. I thought the shower would help it go away. He walked me back to the bedroom 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 inward. 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 was not calm. 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 Dr. He called the Dr. 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. Remember, my whole butt crack was sewn up. I will never forget it. We weren't far from the ER at all. I soon as we walked in they grabbed me. It took about one minute for them to get the IV in me.They waites no time with an IV. They were really fast that night. They didn't know for sure what was wrong bc 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 alot 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.
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PART 2
We decided to go home (NC) for a few days. We left that Friday. I was doing real good, just alot 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. 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 husbad, "Have you seen this?" He said yea, that he had just looked at it. They asked him to look at it again. It looked ok to him. 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 about why it looked the way it did. They packed it for me and we went home. It didn't hurt. The next day we went to the Dr. they referred me to. He said that it had split open but that there was only one stitch holding it together (The Dr. 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 the Dr. that did the surgery he said he would need topack it before we left. I said Ok , bc the night before it
didn't hurt hardly at all. 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.He told me to be quiet because I was going to scare away his patients. I couldn't be quiet. After about 10
minutes he finally finished. It was all I could do to walk. We drove an SUV, and since I couldn't sit, my husband put me in the back like a sac of potatoes. 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 pulled 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 Hcalled his momma and told her he couldn't do that to me....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 Dr. the next day. So we did, again. I will never forget how I felt. I could barely sit on the patient bed. When he came in I told him Ioculdn't do it 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. I put my hands over my butt. 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 "Ok, I dont need it done. You can leave." 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 STOOOOOOOOOOOP sooooooooo loud. She topped. But not because I asked her to. She remembered she needed her scissors and they were in the living room. So she went in there to get them. My mama was really surprised she was already done. She asked if she was finished 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 (where I was gonna go, I don't know) so my momma had to hold me down. It was awful. My daddy had to leave because he couldn't take the screaming. He gets real emotional. 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 bc the different nurses did things different from each other. When Joanna came she was awful. She was really nice, but she did the packing way 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. Then I yelled at her, "YOOOU'RE TOOO SLOOOW! 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.
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PART 3
I was put on antibiotics for the infection. Only after a week of being on it
the Dr. took me off, even though I had green chunky 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 Dr. every Wednesday during the packing. We did the packing everyday from November 4th to December 12th. Not counting the first packing on October 31. 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 re-stitched 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 deep. 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 Dr. 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, "
Yuo've got a whole 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 teh whole was. He said they inject blue dye into the whole and watch where it goes. And where ever teh blue dye goes, that is where the "bad part" is. They cut all of that our 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.
PART 4
SURGERY UPDATE:
While I was in the recovery room after my surgery, my husband and my sister came in and told me what the Dr. 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 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 Dr. 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 was like night and day. I was able to walk, but very slowly. I felt great and I didn't need much pain medicine. When I went back to get the stitches taken out I was so nervous. I had about 15. He took them all out and it didn't fall open. it was a miracle!!!!!!!!! All of the before would have not happened if my first doctor had found the cyst.
LAWYER UPDATE:
It is my opinion that lawyers are incompetent. The first lawyer I contacted told me I oculdn't base a med malpractice case on something that a Dr. had just told me. I dont know what she was talking about, bc i was basing it on what the Dr. didn't do, that he should have. The second lawyer i talked to, wanted to take my case. But due to me beingo ut of work since last October and medical bills, we can't afford to pay for the Dr's evaulation that is required to proceed for a med malprcatice 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 disapointed. 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 teh bills and things we could afford it, tehn again, we would have no reason to sue. I am very frustrated becasue 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 Dr. 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 Dr. 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 Dr. 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 alot 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 thouhgt 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 happend was not the Dr's fault, but the point is, is that he diagnosed me wrong, and failed to do certain test to determine the casue of the pain and infection. To anyone who has pain like I did, please talk to your doctor about the possbility 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.
I do have several pictures, if you are over the age of 18 and would like to see them, please email me.
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Email: singjenn@aol.com
