Protruding tailbone eventually removed

Sheryl - IrIsHjAp0321@aol.com

Posted 2006-04-30

I was given the name of this web site by a chiropractor that I have never met before in my life, and he also told me that I would find a surgeon for me in the Boston Area named Dr. Wood. I was in such severe pain as usual with my tailbone, that a friend of mine could not stand to see me suffer anymore or either that she was tired of hearing me complain about it. She called this doctor up and told him my story which I will get to, and he asked for my number so he tell me personally. Well here I am, and here is my story, I will try to make it short since I tend to ramble on ....

I am a 37 year old female, I live 18 miles north of Boston, MA. Married for almost 13 years and have 2 daughters 18 and 10. I started having problems with my tailbone over 2 years ago and I noticed that it was protruding outwards to the point that using the toilet was hard cause the bone would hit the back of the seat and not to mention the pain that came with it.As we all know sitting was unbearable and forget about lying on my back, that made it stick out more, so I went to my doctor and when he went to go and touch the tailbone I grabbed him by the arm and almost punched him in the face, (true story) and I also swore at him, and told him that it was extremely painful even to touch, it felt like a bolt of electricity going through my body. So he had no idea what to make of it and decided that I would be a good candidate for the cortizone shots, he called another doctor and within a week I was in there having my first shot, worked for a couple of weeks tops, then went back for the 2nd injection not as long as the first and then the 3rd injection maybe a week, and the 4th nothing. No relief what so ever, it seems like it only made it worse.Went back to my doctor for a follow up told him nothing is working on this thing growing out of me so he called a ortho so I had to go and have the normal tests done xrays, mri etc.. brought them all with me and the ortho said the tailbone is protruding, really I did not know that!!! that is why I am here. Well after the normal test they give you left leg touch toes, move body, Lying down to he can manipulate the tailbone, again crying my heart out to ask him to stop, you all know what I mean. He said that I need invasive therapy? Do you guys know what that is.... that is when they have to stick their finger up your bum and move the tailbone back to its place 2-3 times a week at $225 a pop, and there is only one doctor up here that does that, I told him I could not afford that and he looked at me like I can't even explain it. Besides I already had my mind made up that there was no chance that I would do that invasive therapy HELL NO!!!. So as I left crying, I decided at that point that I need to get more opinions on this. I told my husband to bring my x-rays to his Neuro Doctor, he just had neck surgery last March, and this doctor took one look at it and said that This should be removed!!!, but he did not know anyone who did this type of surgery.After months and months of searching for a doctor and going to 5 of them all around this area, They all pretty much said the same thing, deal with it Live with it and there is nothing we can do so suffer and make sure to pay on your way out. The only one that has helped me through all of this is my primary care (Super Doctor) I ended up going to have more injections, these were a different kind I forget the name (when I remember I will update it) After 3 hours in the waiting room for my first injection from him, they told me there was a doctor upstairs that would be willing to see me. So he showed me on the T.V when he injected me, if this is painful and the numbs the area right away this is where the problem is, Ya think!!! Again another smart doctor, but he was really nice though. So we did all that had all the information faxed up to the other doctor he could not see me at that time so it was back home for me. I called this doctors office everyday for 2 weeks and they kept saying they never received the information from my primary care or the other doctor who did the shots, LIARS, I was right there both times they faxed them. Well after waiting and waiting I called for yet another appointment and said oh Sheryl, we are so but Dr. SoandSo does not deal with this area. They knew from the start what the problem was and now they are telling me weeks later. Talk about having a panic attack!!!.

Time went by, both myself and my doctor where still looking for someone to help me out, its like looking for a needle in a haystack, I was willing to travel around the world for someone to look at me and help me, its been a long time looking and I was realizing that I would have to live like this the rest of my life. I went down hill quite fast, I had to quit my job (I was a pre-school teacher) I could not longer take my long walks, run around, or pick up the laundry with out being in agony, no more dancing, had to stop going out cause I could not sit if I went out I had to make sure that I was in a corner so no-one could bump into me. Always had my hand covering my tailbone, if I was hit there or touch lightly I would drop to my knees is pure agony. My life came to a standstill. Everything was painful, living my life in chronic pain day after day the depression kicked in I was feeling useless, worthless and trapped in my house and in my pain, it completely took over my life and I was not like that, I was always on the go never stopping, and know nothing!!!My doctor never gave up on me like I did, she told me there is a light and we will find it, and she was right, after searching and searching, thanks to my family and to my doctor not giving up and to a great friend, I found the light, I found the doctor who dealt with this area right here on this site. I e-mailed him that night, and he responded the next day. Telling me to make an appointment if there was nothing then tell them to squeeze you in. I made the appointment, but had to cancel cause my insurance did not kick in yet, and I could not afford to walk in and pay for the consult and x-rays, and wouldn't you know it that day 2 hours before my appointment my insurance kicked in, so I called right back and told them and they already filled it. Needless to say, I started to cry my heart out, but I made the appointment for the following week March 14, 2006.I counted down those minutes till the day came, I went in there to expect the worst and hope for the best, I was waiting to here out of his mouth there is nothing I can do for you, but then he said that I have been down every avenue I can go and there is only one thing left and that was the surgery, I started crying with joy and hugged my husband who has been my rock. It was my decision that I had to make, he have me 65% chance of being pain free, but I could not get any worse. So I looked at my husband and I had to go with the odds!!! 65% is better than 50% right? They don't know why this happens to people, he said probably cause I was thin, and there was nothing there to cushion it. But there is no real reason as to why this happens some people get it while others do not. Well we set the surgery day for May 8, I just wanted it over with and done with I just wish it was sooner. I asked if they could put me on a cancellation list and they said they would and that I was available anytime. When I got home my dad called me and told me he was going to contact his friend that is the head neuro at Mass General to see if he can do the surgery and then I told him I found a doctor there at Mass General and told him the doctors name and I was all set for Surgery for the 8th of May so I told him that I was all set. Lo and behold, 2 days later my doctors office called and said they can fit me in on April 7 did I want it, HELL YA!!! So I don't know if my dad called his friend or what... never asked did not want to know I guess. Went for the pre-op on the 5th and had the surgery on the 7th.

Surgery went well had to take more of the bone out than he thought, then had to grind down the bone on the sacrum so it would not stick out, stitched me up and I was good to go back to the recovery room that is! Finally made it up to a room 4 1/2 hours later, The first night was the pits, thank god for the pump!!!! Did not sleep at all the first night, my roommate kept me up, I was on a different floor than I was supposed to be on cause there were no beds, I thought she was going to die on me, and she kept moaning and groaning all night, I must have called the nurse 20 times for her, I was going out of my mind. My nurse felt bad for me she tried to find another room for me, but there was nothing, so no sleep what so ever, I was actually text messaging my husband every hour on the hour I was so sore and tired, he got nervous and had the nurse check on me. They never had me get out of bed and walk though, which after reading a lot of stories that is the first thing they want you to do, and they never asked me if I moved my bowels, not once. I did get up and move on my own, that was a tough one, had to ask the nurses to help me out of bed, one nurse assistant pulled me up by my arm and tried to make me sit on my butt, imaging I screamed at her and told her that I could not do it, she said she was sorry and didn't know. Well the next day finally came and I wanted to go home, but they wanted me in there for another night so I stayed, They finally moved my roommate up to ICU, which she should of gone after the 5th time calling the nurse and doctors.

So I had the whole room to myself : ) Still did not sleep, made sure I had the pump going though, that this helped so much, finally got to go for a walk with the family, they made me go in a wheelchair Now that hurt!!

Came home on Sunday the 9th, just wanted my own bed and family around. Well I was doing good the first couple of day yes there was pain, but that is to be expected. The biggest thing was walking, hard to do but you have to I would walk for 10 min lie down for 10 and that went on all day, I was wiped out. I had a lot of spasms very painful they gave me medicine for them but did not really help. So between the spasm and the pain in my tailbone which was no longer there I was a mess. I am going to end this cause my legs are killing me LOL

I am 3 weeks post op tomorrow, I have over done things, with bending, cleaning, laundry, cooking and going up and down the stairs, walking around and not resting, that the pain has increased dramatically, I do have a lot of people around me to help out, but I don't ask, and I just tell them that I am ok. I have learned from this site to be honest and ask for help and tell the people that love me that I am in pain and I am not ok.There are good days but still pain, and then there are the days that I feel a lot of pressure and burning sensation in my bottom and I still have the pain in the tailbone that is not there (I suffer from what the call phantom pains) I need to remember that it takes along time to heal not just 3 weeks, days will be good and days will be bad, and eventually the good days will be more than bad. I cut back on the things that I have done these past couple of days, cause the only person I am hurting is myself, I did not realize a lot of things after the surgery, that I should of asked my doctor, but thanks to this wonderful site I have my questions answered every day with the discussion group. They have all been super and straight forward with my questions, and they even told me in so many words that I was stupid for doing the things that I was doing. I need time to heal even though the outside is healed the inside is not, the nerves muscles, tissue needs time. I told you that I ramble on and on.

I will update again in a couple of weeks, and hopefully I am a little better than I am now. Thanks so much for this site!!!!!!!

Sheryl from Boston

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