Morgan from Maryland - Morganfgaither@gmail.com
I'm on the path towards coccygectomy it seems.
My tailbone pain started in January of 2011 without any traumatic event. I think we all know this story by now....saw an urgent care physician who took an x-ray, saw no trauma and recommended I sit on a cushion and give it time. By August I brought it to the attention of my GP, and was given a list of physical therapy-type exercises to try. No relief.
At the beginning of this year I started my true quest for pain relief: MRIs (showed only a very mild disc herniation at L5-S1), X-rays, ganglion impar injections, caudal epidural intection, and chiropractic care. The relief from the injections lasted about 6 weeks. But it's back. And so, I've had one surgery consultation and have an appointment with the Johns Hopkins Spine Fellow Clinic in January.
I'm 27 and far too active to be in this much pain the rest of my life. I lift weights. I run. I'm a triathlete. I will hold out surgery as a last resort, but I will take a chance if it comes to that.
I've been comforted by your stories, and appreciate this site for the wealth of information it provides.
On January 25th I had my appointment with the Johns Hopkins Spine Fellow Clinic. I brought along a list of the injections (and injection dates) as well as my previous MRI/X-ray originally taken at the beginning of 2012.
He did an external exam just to identify where the pain was, and after having some computer issues trying to read the x-ray CD, he had me take new x-rays right there on the spot. After checking out the x-rays and confirming that the image didn't show any injury, we had a long talk about coccygectomy. The pros/cons, etc. He informed me that most of the coccygectomy cases the group sees get referred to Dr. Cohen (see Doctors and specialists in the USA, Maryland, the same Dr. Cohen of Susan's story). He said that he'd like to consult with Dr. Cohen about whether or not surgery should be an option for me.
Later that evening I got a call from the doc letting me know that after chatting with Dr. Cohen, they decided they'd like to have me get a CT scan of the coccyx.
I had the CT yesterday (February 1st 2013) and got a call last night from the doctor after both he and Dr. Cohen had a chance to review the CT scan. He reported that they saw an old injury/fracture on my tail bone. I could have kissed him when he said that. I was so happy to hear that after two years of pain and other types of imaging, there might finally be an actual explanation for my pain. I'm sure you all know the feeling....I had been in intense pain for two years without any explanation. So frustrating!
The doctor recommended that (though I already had 5 coccyx injections last year) I have Dr. Cohen do another injection right at the area of the old fracture. They believe that if the pain goes away with the injection, they will have a higher confidence that they've actually diagnosed the problem correctly and can give me better odds that a coccygectomy will help. So, here it goes....ONE more injection.....and then maybe surgery. I'm crossing my fingers that this "journey" is almost at an end. Here's hoping!
Also, I'd like to add an aside: For the last 30 days I've been following a Whole30 diet (whole9life.com/). I have had a SIGNIFICANT decrease in the amount of inflamation around my coccyx in this time, and I'm positive that it is correlated directly to my drastic dietary changes. I brought this up to my chiropractor who confirmed that I was eating what he called and "anti-inflammatory diet". Don't get me wrong, I'm still in pain, but the reduction in extra inflammation is a welcome relief.
Good luck to all of you. Stay strong!
I had my injection with Dr. Cohen. It made the pain much worse for a couple days (as I experienced with the previous 5 injections), but the pain never went away this time. Additionally, the Spine Fellow I was working with (who originally coordinated with Dr. Cohen) left Johns Hopkins to take another position. Unfortunately, following up with Dr. Cohen would take a couple months since I'd been seen as a new patient with him after my doctor left. And even then, he'd likely want to do another injection. That's not going to happen. I'm done with injections. 6 in one year is enough especially since the pain relief is temporary.
So....I went back to talk with Dr. David Levin at The Orthopaedic Center in MD (see Doctors and specialists in the USA, Maryland) who had already agreed to do a coccygectomy. We chatted again about my odds, the risks, etc. and agreed that I'd go ahead with the surgery. So folks, with fingers crossed, I have my surgery scheduled for March 26th. I'll try to keep you updated on the recovery.
Well folks, it's done. I had my coccygectomy last Tuesday March 26. Here's a short update on my experience since then.
Surgery Day: My operation was an outpatient one. The evening before, I did a colon prep/cleanse. Had a horrible time with it, but choked it down none the less. I arrived to the hospital the next morning at 6:00 am. My surgery was scheduled for 7:30. After getting checked in and meeting with the surgeon, my anesthesiologist, and nurses, I was prepped with an IV and rolled into the operating room where I was given general anesthesia through an IV. I woke up a few hours later in the recovery area. Things went well. My doctor let me know that I had two bone spurs on my coccyx and another mild problem (I was too doped up to remember what he called it). He had my coccyx sent to pathology just in case. He used dermabond and dissolve-able stitches to sew me up. After a while in recovery (they had some trouble getting my blood pressure back up), I was driven home. I wasn't too bad and I was able to lay on my side for the short (20 minute ride). I spent most of the day doped up and sleeping on/off and icing the injury.
Next Few Days: Each day since surgery has been better and better. I've taken a walk every day since surgery day (about 30 minutes the first day and up to about an hour today). I'm down to splitting the pain pills in half and taking half once every 4 hours or so depending on the pain level. I've been sleeping poorly and am generally tired of having my weight on my hips all day long. I try to stand and walk around a lot, but you sure do forget how much you use your bum when you can't sit any more. My follow up is this Friday and I know I have a long road ahead of me. I still can't sit and am just trying to hit hurdle one: get the wound healed, but I'm in good spirits about the whole thing so far. I've luckily avoided and wound infection which was one of the major post-op concerns. Crossing my fingers that I continue to keep things germ free.
My first follow-up with the doc is this coming Friday. I'll keep you guys updated!
April 6: The follow up with the doc yesterday went as well as I could have hoped. He confirmed for me that I had a mid-line defect in my coccyx as well as some degeneration in the joint in addition to the bone spurs. He mentioned that I had noticeably thin skin in the area too (for what it's worth). I confirmed that it was a full coccygectomy. He let me know that the wound is healing very well and encouraged me to keep doing what I'm doing. He has me coming back to see him in another 4 weeks. I've really enjoyed my daily walks and am up to about 1 hour 15 mins. My in-laws left this morning so I'm on my own for the next 10 days. I'm down to half of a percocet pill every 5 hours or so and a full pill before going to bed.
I know it's a long road but I'm optimistic that I might be at the end of this crazy "illness" soon.