Eventually found a doctor to take the problem seriously

Sarah in Kansas - dowells4@yahoo.com

Posted 2008-09-28

Hello. I am 26 years old and have been experiencing lower back pain for 10 years. I have been to many different doctors, all of who either want to only give me pain meds, or make me feel like I make this pain up in my head. Last June (2007) I was put in the hospital for 10 days for some crazy virus that attacked my nervous system. Anyhow, while there I was told by my infectious disease doctor that my tail-bone was off to one side and he thought maybe this was the root to my long term back issues. He told me then that he thought that I could have my coccyx removed, but he wasn't sure if there were any doctors around here that did it. I KS.

I had found a great chiropractor in town (I had been to several others over the years), he did some more x-rays and did find there was some definite problems with my coccyx and I also had an extra vertebra. He said that there is a way to manually adjust tail-bones, however the way mine was he thought he would break it if he tried. I started seeing him for many weeks, several times each week. After this he told me he didn't think we were getting the results he wanted, so he thought it was time to make an appointment with a spine specialist. I finally made an appointment with supposedly the best spinal surgeon in Wichita.

Here I thought finally maybe I'm going to get some answers and be able to live my life again. However I left his office feeling worse than I did going in. His bedside manor was horrible!! He was only in the room for 45 seconds, and basically told me he had no idea why I would be having pain. He didn't think my coccyx could cause the pain I was having. Which by the way is every single day of my life for 10 years. I can not bend over, tilt my pelvis, or sit straight without extreme pain. I have two daughters and I can't play with them the way I want to. It is very frustrating!! I also have pain going from the sitting to standing position. Many times when I try to sit, I feel like I've just sat on a pole. Like I can feel a pole going straight up inside me. Anyway back to this doctor, he basically told me the only thing he could do for me is to make an appointment for me to get injections.

Anyway the first time I did this, the doctor doing the injections (a different dr.-but he is FABULOUS!) went into the my last normal vertebrae, not the extra one. So, two weeks later I went back and he injected my extra vertebrae, both SI joints, and my coccyx. While the local was still effective, I felt like I had never felt for 10 years!! But once that wore off I was MISERABLE for about a week until the other kicked in. Then I was virtually pain free for 2 1/2 weeks, then got progressively back to how I was. The beginning of June 2008 my sacrum started to protrude a little out of my skin. It had never been like this before, if you felt (I know this is kinda gross, but...) right at the top of my crack, you could feel some weird bumps, but now you can see it!! Except when I lie on my stomach. I tried this and had my husband look to see if it showed then and he said he doesn't when I lie on my stomach. So now back to this personality free surgeon, who this time was only in the room for 30 seconds, and said, "I do not do anything for tail-bones, my nurse will call you with your next injection date." I always leave his office in tears. Why can't he be just a little sympathetic? Well I got my last injections last week. I felt good while the local was in, but not as good as the time before. Tomorrow will be one week since the injections and it still hasn't kicked in completely. I am still having pain when I bend and also tilt. While the doctor was injecting when he turned his machine that is like an x-ray to look at my coccyx in the lateral position while he watched the needle go in (sorry, not sure what the machine is called), he and all 3 nurses in there all said "WHOA!" when it showed my tail-bone at nearly a 90 degree angle. He said, "Wow, Sarah this will have to be taken care of." I said, "So you are saying that I'm not crazy?!" He said absolutely not. (I had shared with his that the other Dr had made me feel like I'm just making this up.)

So I've started my own research, which is where I found this group and have been contacting a doctor in Dallas who does coccyxgetomies (although Dallas is about 6 hours away.) I just have not found anyone around here who even does it. I am interested in any advice, or anyone else who's coccyx seems to have the angle. Thanks for listening.

My husband and I traveled to Dallas last week to see Dr. Gill at UT Southwestern (see Doctors and specialists in the USA). This was the best thing I've done for myself regarding my pain!! He actually took the time to go through all my images, he listened to us, asked us questions, and spent a considerable amount of time talking to us about my issues, and had a wonderful attitude and personality in doing so.

WOW!! This was a completely different experience than what we have had in Kansas. He did not make us feel like I was crazy, and did not talk down to us. He confirmed what I thought: that I had two completely separate issues. My tailbone does need to be removed (due to childbirth trauma) and I have degeneration in the disc right above my extra vertebrae, causing the pain when I bend over, etc. He will do the surgery for the coccyx, which I just found out will be Nov. 3. He has recommended me to Texas Spine Institute for the artificial disc (AD), only because the AD's that are on the market now are too large for my body. They work better for 5'6'' or taller people and I am only 5'2''. I guess the Spine Institute does some research and may be able to get a smaller one that may be on trial. Please feel free to contact with me with any questions, or those of you who have both of these issues together please let me know your situation.

Sarah in Kansas

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