Coccygectomy after 15 years of pain

Jen -

Posted 2007-02-04

I am now 4 weeks post-op from my coccygectomy and I feel great. I recently contacted one of the people from this website who had a positive experience/recovery and he encouraged me to write my story so here I am. I would also like to thank Jon for setting up this website; it is a beacon of hope for those of us who feel like we are the only ones to have to deal with this type of pain!

Before my surgery I endured 15 years of pain. I broke my tailbone roller skating when I was 12 years old and re-injured it in a fall last summer ('05). After the initial injury the doctors said that the only treatment available to me, since I was so young, was either steroid injections (which is incredibly painful) or over the counter medications like Advil. When I re-injured it last summer I got to the point where I couldn't sit for more than 5 minutes without horrible pain and I was beginning to feel pain while standing (I work a retail job so that was not good at all). I finally had had enough and decided to look into surgery, which I was now old enough for.

I live in New Hampshire so there are not many doctors who perform these types of surgeries but fortunately we have a great college and medical center in Dartmouth, New Hampshire. Dr. Philip Bernini (see Doctors and specialists in the USA) is the only surgeon in the state (as far as I know) who does coccygectomies and he was great. I would definitely recommend him to anyone in this area needing orthopedic care.

My surgery was Tuesday, January 2nd. I was admitted to the "Same Day Program" at Dartmouth at 8 am with my Mom in tow. I met with the doctor and anesthesiologist and by 10 am I was on the table. I would also like to mention that the nursing staff there was awesome and made me feel very comfortable and completely at ease. The surgery lasted about an hour and then I was in recovery. The only thing that did not make sense to me (and someone else said it too) is that I was wheeled into recovery on my back . . . ouch!! I was given crackers and juice (which was like filet mignon and shiraz by that point) as I began to wake up. By about 2 pm I was up and walking, though I was still very nauseous, and was able to be discharged. The hour long ride home was helped by morphine, oxycontin and percocet along with MANY pillows!

The rest of that day and the day after I was on my stomach in my bed (a pillow under my stomach lessened the pressure on my chest). The next day I ventured out to the living room and laid on my stomach and side on the couch. Someone else said that eventually the pain in their hips was unbearable and I would like to second that, I have never felt like that before. By Saturday I was able to sit with my legs tucked under me on the sofa and on Monday I started walking the couple of blocks to our corner store (mostly out of sheer boredom!). 10 days post-op I sat in the backseat of the car to go to dinner and sat (a little uncomfortably) for over an hour during dinner.

The one thing that I felt the most during the first week and a half was the intense pressure and pain in my gluteus maximus. It was the weirdest sensation . . . like I worked out REALLY hard in two spots, three inches long directly laterally to where my tailbone used to be (they have to cut through the muscle to get the bone out). Stairs were quite difficult but walking early in my recovery helped I think.

Over the next couple of days I was able to sit longer and longer in chairs with less and less padding. It is amazing how depressing it is to walk into a room and not to be able to just SIT somewhere! On day 18 I drove for the first time in almost three weeks . . . such freedom is not known until it is lost!!

I had my follow-up appointment a couple of days ago and have been cleared to go back to work with no restrictions. I feel like there is nothing I CAN'T do now except maybe ride a horse!!! ;-) My disability leave will have been five weeks long when I go back to work tomorrow and that is just long enough for me. I am glad that I was able to heal quickly, though I still feel like I am not done. The recovery for this surgery is so long! My doctor said that I will probably feel about the same as I do now for up to four months. The incision site feels very tight now, like I could rip it open if I sit the wrong way. Inside it almost feels like there is something there, like they replaced the bone with gauze (which of course they didn't). Cushions and pads don't really help me now, but the feeling is more weird than painful.

I would 100% do the surgery again and I am a little upset that I didn't do it earlier. If you are considering surgery please be sure your doctor has done many of these in the past, some of the recovery stories are scary! I would also suggest a couple of other things:

1) Make sure you have someone that you are VERY comfortable around for at least a week to a week and a half after your surgery since they have to change your dressings and that could lead to a large amount of additional embarrassment for you (my Mom changed my diapers when I was a baby . . . ).

2) Speaking of: get some baby wipes for use post-op. They are great for making sure that you are clean after BMs (remember the incision location to your anus), and it is an easy way to clean your incision after the glue/stitches are gone.

3) Do as much as you can as early as you can, without stressing your body too much. If you feel like you can walk a couple of blocks then do it (take someone along the first time though just in case)!

4) Know that recovery for this surgery will be long, but that it will eventually improve your quality of life.

5) Only take your medications for as long as you need to. I ended up taking Tylenol PM a couple of nights instead of my Percocet. Narcotics tend to constipate you and make you too tired after the first couple of days. The Tylenol got rid of the lingering pain and helped me fall asleep.

6) Don't be afraid if your incision spot bleeds a little, even weeks after surgery, the wound needs to heal from the inside out so discharge is normal. My incision didn't bleed at all until three weeks post-op. It isn't a lot, but enough to warrant a note here.

I hope this helps anyone considering surgery. I would highly recommend it if you are a good candidate and have an experienced doctor. Please let me know if anyone has any questions for me. Hopefully I didn't ramble too much!! Good luck!

Update, 2007-05-13

It has been 5 months since my surgery to remove my tailbone. I am definitely feeling better than I had before my surgery, but I'm still not 100%. It is amazing how great I can feel one day and then have pain the next. There is not much that I cannot do now, but I am reminded daily of the long recovery this type of surgery requires.

I recently traveled a lot (2 hour plane ride (X2), and a 5.5 hour car ride (X2)) for a wedding and I now feel like I have taken a HUGE step back in my recovery. Apparently it isn't a good idea to rush ANYTHING dealing with coccygectomy recovery!!

I am still very happy that I had the procedure, I am just wondering now when I will be 100% . . . I am getting tired!

Good luck everyone! Jen

Update, 2008-07-02

It has been a year and a half since my surgery and though I have no specific date when I began to feel 100% recovered it has happened. I am so glad that I had the surgery- my quality of life has improved dramatically! Just be warned that it can take a LONG time to fully recover- and I did not have any problems with or directly after my surgery.

Because the gluteus maximus is cut to get the tailbone out, it takes a long time for it to regenerate. I would suggest walking as much as possible and using a stairmaster-type machine, or an incline on a treadmill. It is important to do as much as you can as quickly as you can, though I would put any long trips off (if not necessary) for at least a year. I went on two and felt like I went backwards in my recovery.

I would be very happy to answer any questions that people have about the surgery or the recovery - I wish I had found this site before so I had someone to ask . . .

Good luck everyone!

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