Still in pain three weeks after surgery

Carol S. -

Posted 2011-09-18

After two years of uncontrollable coccyx pain, I finally gave in and had it surgically removed three weeks ago. I had tried every therapy in existence including acupuncture and chiropractic and nothing could touch the pain except for narcotic pain killers. I had broken my coccyx as a teen but it had never hurt until two years ago when I had cervical spine surgery. By the tiime one end of my spine was healing up nicely, the other end started hurting. My neurosurgeon told me he didn't do that end of the spine and brushed me off with a prescription for pain pills and told me I was "in no man's land" with coccyx pain.

Over time the pain continued to get worse and I went to see my primary doctor who sent me for cortisone injections. They were very painful and only made matters worse. Following that I was sent for 4 months of PT which also did no good. I went back to my primary doctor who sent me to a surgeon this time. The surgeon sent me for more cortisone injections which also did not help and were very painful. Then he sent me for another 6 weeks of PT which did no good.

I'm 66 years old and MRI's showed that I have some osteoarthritis throughout the spine but nothing that stood out which might be causing severe chronic pain. My worst pain, by the way, was just to the left of the sacrum/coccyx connection right up against the bone and that never changed. I also had pain down my left leg and was unable to turn my toes under on my left foot but all that paled in comparison to the coccyx pain. I wasn't getting much support at home either. My husband wanted me to see a shrink. Finally, as a last resort, because I couldn't live with the pain any longer - really! - I had the surgery. Today is three weeks and I'm in as much or more pain than before. Certainly I have to take twice as much pain medication to get any relief. The surgeon used stitches that dissolve and my incision came open at one end. I'm still dealing with that which has prolonged the healing.

Right now I can be up and fairly active for several hours in the morning and then I'm in bed for the rest of the day or lying on the sofa. I have very low energy level. Sometimes I feel like I can't stand up. I can only sit for maybe a half hour per day but I pay for it with increased pain in the evening and, of course, I can't drive. I've always been very active and this is driving me crazy.

I would love to hear anything encouraging from anyone who has been through this. It's hard to keep my spirits up as I can't help but feel my life is pretty much over. I've always been stoic and no one really knows how bad things are with me. I hope to be able to post a more positive account at some point. My best wishes to everyone else enduring this hell.

Update, 2011-12-18

Hello again everyone. I've not posted an update since about 3 weeks in because there was nothing new to report - just one hideous day of pain after another. The only time I wasn't in pain is when sleeping and that in itself was tricky and only managed with a sleeping pill. But today is exactly 4 months since surgery and I do believe there is some slight improvement underway. There were times when I was quite sure this would end in divorce, suicide, or both but maybe not.

I came across a free booklet online recently which was written by a doctor whose speciality for over 30 years has been chronic/intractable pain. I've incorporated several of his suggestions (regarding diet and supplements in particular) which may actually be paying off...or maybe it's just time to be healing. In any event, the booklet is loaded with tons of practical suggestions for those who suffer difficult pain. It's called Intractable Pain Survival (PDF) by Forest Tennant. He's not selling anything and neither am I.

I wish all of you loving support in your quest for pain relief and a joyous holiday season.

Carol S. in California

Update, 2013-07-14

Hi folks. Looks like it's been a year and a half since I last posted. My coccyx surgery was two years ago and I am sorry to report was unsuccessful. That is I still have the very same pain I started out with. It lives at the spot where my lower left sacrum joins the spine.

Since the surgery I have tried other approaches hoping for pain relief. I had an RFA last year which seemed to provide some relief though it has worn off now. I also had Botox injections which provided very little if any relief. I had nerve conduction studies done at UCSD and was told that I may have piriformis syndrome. I was referred to a neurosurgeon who suggested I try to find a physical therapist as he didn't know anyone in the area. This is the only piece of good news. I happened upon the physical therapist who's specialty was manual therapy which he has been practicing at one location for 30 years. He had a good Yelp review and so I went to see him. Within 8 weeks I was about 80% pain-free. I felt so good that for the first time in over two years I went on a little vacation trip to New York with my husband.

Very shortly after that I was diagnosed with breast cancer. It was caught early and the surgery was successful but, for what ever reason, the old pain came back and still persists 2 months later. If I got better once I'm hoping that I can get better again. In the meantime my only alternative is to continue to take the same pain meds that I've been on for over two years now. I do hope that my next update is a happier one.

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