Scared about coccyx removal

Robin - mynotespad@hotmail.com

Posted 2010-06-13

I am writing from Michigan.

I will sum up my story to the best of my ability. Nearly 4 years ago I started having trouble with my left hip. I went into my doctor concerning it as it kept getting worse and worse but no answers as to what was wrong. I had several rounds of physical therapy which always helped while going but once done I would quickly go right back to where I was before. My body wouldn't "stay".

Last summer I went skydiving and came down on my butt as we were instructed (legs out). After this my hip got worse and I started having trouble walking. I went to my doctor again and went through another round of p.t. which, once again helped. During these years, I went to specialist, had MRI's done, (which showed nothing), saw a hip specialist, was thought to possibly have MS etc.

I worked all day in an office sitting. I began to notice in September or so that while sitting for long periods, especially at the end of the day, if I had work to do on the computer, a burning stinging feeling that got to be so bad I would have to lay down and get the pressure off. Sleeping got to be horrible as I was constantly waking up due to pain in my body and discomfort. Sex too, was affected and became something to avoid as my body was worse after having it.

Finally Dec. 30th I went out to dinner with a girlfriend after work. Didn't get home until after midnight, so a very lonnngg day of sitting. That night I slept horribly and when I woke the next day on New Year's Eve I was in excruciating pain. By this time I had noticed my body had developed what I call tremors in my body. I was in so much pain that I almost went to the ER, but decided to wait. Took a vicodin which barely took the edge off and ended up (after getting to bed about 3 am) sleeping until 2 which I never do. I had the weekend and thought perhaps I could rest it away, as I had done in the past but it didn't work. I went to work on Monday and had a very hard time, weakness in the legs so that every time I stood up, they would give out on me and horrible, horrible pain that increased though out my whole body.

I called my boyfriend and told him that I needed to go to the ER (this was 3:30 pm). We went, I could barely walk and ended up waiting (sitting!) there all night and finally was seen about 1 am. They gave me some pain meds and said they couldn't admit me and sent me home. They had spoken with my dr. who was also on call at another hospital and she wanted to see me the next day. I literally could barely walk when I went to see her and she had some emergency MRI's run and gave me a steroid boost, and wanted to see me the next day. I did and was the same if not worse, she had me admitted to the hospital immediately because I was so bad. I was there for 10 days with no one being able to figure out what was wrong with me even though I was very specific about where I was feeling my pain. At this point the body tremors had developed into convulsions that looked like seizures. I was on darvocet every 6 hours. After not getting any answers I was released still not being able to walk or able to stand upright. I started seeing a chiropractor who has been the only to date that has been able to help me and has done some manipulations and manually also moved my coccyx which he has told me is hooked.

But my body doesn't stay. I wear a sacrum belt nearly all the time, use the donut and can only sit in a special chair. My sitting is limited to only a couple of hours at best. Mostly I have to lay down. I have now been laid off from a career that I worked hard to have, can't drive and have seemed to lost nearly all that I worked so hard for. My world has become very small and filled with bad days and pain.

I have heard some absolute horror stories about coccyx removal, and so am scared about possibly having it done but on the other hand am at a point where I feel that this may be my only choice since no one seems to be able to help me. While the manipulations have helped they have not fixed or helped enough. My coccyx just goes right back to where it was before. I was in fairly good health before this and definitely much more full of life. I just feel that I am too young to have this be the rest of my life like this. Though Dr. Graham (my chiropractor) has gotten me a long ways, I think he has gotten me as far as I can go and has helped me when no one else would or seemed to want to. Many in the medical community have not been helpful and throw up their hands so to speak. My worst fear is that I would be worse off than before concerning the surgery.

I refuse to do the cortizone shots. I have been on pain meds for all of these months, as well as anti-inflammatories, muscles relaxants etc. I have the occasional good day but not usually more than 2 in a row, with most of them bad and me in bed or lying down. I have fought hard against depression and have at times lost the battle, but have fought my way back.

My apologies for this being so lengthy. I wanted to be able to give you a clear picture as much as possible. Any feedback I would love to hear.

Robin

Update, 2011-01-23

So it is now post op 1 week and I'm not quite sure how I'm doing. I still have a LOT of pain but it is definitely from the surgery. I lye as much as possible on my belly but also will lye on either side. I absolutely can not make it without pain meds though at all. I am taking the pain meds I was on before the surgery vs what the surgeon gave me because when I take the pain med he prescribed, esp. with the antibiotics it makes me so sick and I get the worst kind of headache. VERY BAD headache which only makes me more sick. The incision site looks good and seems to be healing. I very much want to hear from those that have had the surgery and find out what kind of time I am really looking at before things like lying on my back. (forget about sitting at this point) though I can now sit on the regular toilet seat (vs the higher one) when needed but only for a very short period of time!

Here's what I'd like to know a time line for: Lying on my back; sitting (and for how long, when); driving; sex; stairs; hiking; dancing; horseback riding; rollercoaster rides

Please write to me at mynotespad@hotmail.com and let me hear from you about what your recovery was like, any setbacks you might have had etc. I just can't believe how much it hurts still just lying and changing positions in bed. Is this NORMAL??

I don't regret the surgery at this point YET, but will indeed if things do not improve.

Robin

Update, 2011-03-20

Surgery was performed by Dr. Hanley (see Doctors and specialists in the USA, North Carolina). I am now 2 months post op: I'm still not doing very well and am getting discouraged as pain is still very, very high. I don't get it! I figured - based on what I have read from others and from corresponding with others - that my progress would have been much further along. I know my case was extreme to begin with, and I knew there was a risk that perhaps the surgery may not work but I didn't think I would still be in the situation I am now- which is this. I'm still having to take it VERY easy, still bedridden for the most part. I AM now able to lie on my back, but sitting is very limited and I'm not doing it at all any more because I think I may have screwed up and I'm so angry.

I actually was feeling pretty good, though impatient with my progress. I felt it was moving forward if not extremely slowly every day. I was being able to walk better, sit on a toilet like normal, able to sit in a bath tub etc. But it was all still with me taking Methadone and Viodine. Based on what some others had said, they were down to ibuprofen so I felt a little concerned that I still needed such strong pain meds. I eventually felt like I could even sit at around week 6 and did so for about 10 minutes. I had also finally gotten myself off from vicoden and was just taking my methadone. I had a busy month in Feb. with two birthdays. I was up all day for both of them, made dinner etc. Doesn't seem like it should have been that big of deal right? Then why was it? I didn't do anything THAT major. I made dinner. I cleaned up as I went, making dinner. I stood a lot, I was on my feet being more active. But it did me in. Had a friend over a couple of times to help me with wedding plans. Same case, I was up more, worked on my laptop more, so I spent more time on my back etc. Was up and down more... but NOTHING super strenuous. After these 4 different things it seemed I got set back really bad. I even had to take a vicodin late in the day because of the increased pain. :( I DID lie on my back much more once I could, using my laptop and I don't know if that screwed me up or not. ....

Then this past week (3/8) I ran out of my methadone and couldn't get a doctor's appt. until (3/14). My pain went through the roof. My surgery pain seems like it should well be over but not having ever had surgery before I have nothing to compare it too other than what others have said about their own surgery before and after pain accounts. I also have heard that going through withdrawals can be painful and so didn't know if that was contributing or was actually the cause or what. This past week has been the most discouraging week I have experienced since the surgery. I had to go back to taking vicodin several times a day just to stay on top of the pain. I thought I would be feeling so much less than this. I am terrified now that the surgery didn't work for me!!!!!!!! :*(

I got a hold of Donna, Dr. Hanley's nurse who seemed to be nonplussed by my pain and reiterated to me that I'm only 2 months post op and that "some people are like that", she also said that I "could be feeling pain a year later after surgery" !!! What???!!! She said that it just happens for some people. This was not told to me before. I'm scared that I'm one of those people that surgery doesn't help a bit and I'm going to be stuck with this pain and debilitated for the rest of my life!! I am devastated because I have read update after update and they all make it seem like a cake walk or a piece of cake with all of this "immediate relief" and HUGE percentage of being better, and only after a few weeks being able to do this and that. What the hell? I am devastated and feel desperate because this was my last hope.....

So- I'm not discouraging the surgery by any means, just letting people know the other side of it too. I wanted to be able to be off from narcotics by now, and still need them to even exist! When I go to my dr. appt, I guess I will go in for more Methadone. Dr. Hanleys office wasn't helpful at all concerning this telling me that "they don't prescribe Methadone so they didn't know how to deal with it".

Please-- contact me if you have suggestions, thoughts, encouragement or anything else to offer.

Robin

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map