Long history of tailbone pain, successful surgery, hernia and mesh repair

Pam, USA - pamchandler57@yahoo.com

Posted 2014-06-30

I had my coccyx removed on June 19 2014. I have a long history of tailbone pain.

I live in Springfield, Missouri, USA. I started noticing tailbone pain in 1999. No particular injury occurred, but I had just lost 55 pounds and my backside was an area of major weight loss. I do remember having tailbone pain prior to the birth of my son in 1986, and also fell while roller skating when I was 15 and snow skiing when I was 24. I had some tailbone pain after both of these accidents, but it didn't seem to bother me enough to even go see a doctor. During childbirth I needed an episiotomy because large heads run in our family and our son's head was at the 100th percentile. (He is a brilliant Ph.D. scientist, so he was worth it!)

About 7 or 8 years ago I started being intolerant of sitting, and when I stood up, I had a burning sensation in my tailbone area. The pain became more and more prevalent and more fatiguing. I started getting injections in my coccyx (great response for 2 months, then pain returned), and did about 3 rounds of PT. I had my tailbone manipulated by a physical therapist, which also helped but pain returned when my tailbone alignment reverted back to it's abnormal state. I got to the point where I needed a hydrocodone pill to reduce the pain to a manageable level.

I had previously had 2 lumbar laminectomies (in 2000 and 2005) due to a car accident causing a large herniated disc and some other damage that impinged on the spinal cord and caused leg pain and numbness. The first surgery didn't take care of everything, hence a second surgery.

Because I had a history of surgeries, I really didn't want to have more surgery, so I put off seeing a surgeon. Also, my pain doctor said that the success on tailbone surgery was questionable.

However, I finally scheduled a surgical consult with a neurosurgeon. The office suggested that I obtain an MRI while I was waiting for the consult. Getting this approved through my insurance was slow and had to be rescheduled once because of the insurance dragging their feet. The MRI showed no fracture but my tailbone was abnormally hooked.

Finally, the consult occurred, and my neurosurgeon who had done the previous surgeries decided that I needed to see his partner who specialized in coccygectomies.

I waited another month to see this doctor who specialized in coccyx surgery. He said that because of my good response to injections and the abnormal shape of my tailbone, he would do the surgery.

In the meantime, I scheduled the surgery for 7 weeks in the future. I also planned my retirement around my surgery, taking 4 weeks of sick leave after the surgery and before my official retirement date. Three days before my surgery, just after my retirement reception, the insurance denied my surgery, after an insurance doctor having a peer-to-peer review by phone with my surgeon. The insurance doctor said that my insurance plan did NOT cover a coccygectomy at all, even if needed, and was not appealable because it wasn't covered as a procedure. Note that this is 7 weeks after I scheduled it. I don't know if it was the surgeon's office not getting the surgery approved early, or if it was the insurance not informing me until then, but this totally messed up my retirement plans. So, I had to appeal the decision, and work for another month! First, I called and clarified that coccygectomy WAS in fact a covered procedure. Then, I went to my pain doctor (a specialist in physical medicine) and obtain a letter from him and his notes, and got a pharmacy print out of all of the narcotics I had taken over the past few years. I also wrote my own letter. I became a very squeaky wheel, so to speak, and even contacted my state representatives about how I believed my insurance had been unfair. All of this seemed to work, the insurance approved my appeal.

I had my surgery on 6/19/14. The surgeon required a colon prep prior to the surgery, which was more traumatic than the surgery itself, it made me very sick and my blood pressure was very high before surgery because I hadn't slept the night before due to nausea.

I went home the same day, the doctor said part of my coccyx was "dangling", so must have been fractured previously (even though MRI did not show this). He removed 1.5 inches of my coccyx and smoothed what was left of the bone. I have a 2.5 inch scar just to the left of midline, he avoided an incision in the more sensitive skin folds so it would heal more quickly.

I feel pretty good, taking 3-4 Percocet per day and not spending much time sitting. I feel most comfortable laying on my sides.

I will update you with my progress in a couple of months.

Update, 2014-07-20

Went back for check 3.5 weeks after surgery. Physician's Assistant was amazed at how good my incision looked. Feeling better, still need 2 hydrocodone per day and am using up my post-surgery Percocet, one per night.

I would highly recommend Chad Morgan, MD, Springfield, Missouri (see Doctors and specialists in the USA, Missouri). He is a neurosurgeon and specializes in coccyx surgeries. I am very pleased with the results. The lack of infection due to his detailed instructions is a relief, this was my major worry. His physician's assistant and staff are great. Very good with attention to pain control and quick to return phone calls.

I have been working about 12 hours per week doing financial bookkeeping. I cannot sit for very long without shifting positions. I still spend several hours per day laying on my side, as this is very comfortable, and watch a lot of television to pass the time.

I feel that my progress is quite good, I expect pain for quite a while, so pain to me is reminding me to take it slow.

I will update you again in a few weeks. Thank you for this website, it has been quite helpful to many people!!!

Update, 2014-09-14

I am now almost 3 months post surgery. My pain is getting better, but very slowly. The pain is almost a dull ache now, compared to more sharp and searing prior to surgery and right afterward. We made a 700 mile trip (one way) to move our son and his wife to Atlanta at 2 months post surgery, and I really don't think I could have driven the car for a long trip, because I needed to shift positions very frequently to take the weight off the location of my surgery. It was not an easy trip.

My need for a narcotic pain pill (hydrocodone) is down to 1-2 per day. I am hoping not to need any after another month, but I am glad my doctor has refilled my prescription as this Rx has been helpful in getting through my workdays. I have absolutely no pain unless I sit, and only if I sit back or slumped, not if sitting forward. I am pleased with the progress I am making, knowing that this is a process and I went into this without the expectation of being pain-free.

Update, 2015-08-23

My pain level is improved significantly post-coccygectomy. I have seen a pelvic floor therapist and am learning a lot about how to work on core strength. That is very important in coccyx pain and treatment. I also have a lot of lumbar spine degeneration and if my low back pain flares, this causes my sacral area to be painful also. I still do not sit well for long periods of time. I think I might always have to do a lot of shifting of positions.

I still do take pain medication, I try to keep it at 1 or 2 per day. I'm still in hopes for more improvement in the next year.

I do believe the surgery was helpful and would do it again.

Update, 2016-02-14 - hernia and mesh repair

My last update was that I was recovering from tailbone removal. I was doing fairly well but still having a bit of discomfort. The discomfort was a feeling that I was sitting on a golf ball. I went to a GI surgeon and even went for physical therapy for rectal pain and core issues. One day, I realized that I had a hernia where the surgical scar was. I was having difficulty with emptying my bowels completely also. I had my husband look at it and we decided that was what was going on. After researching the internet, I was fairly sure that was what it was but also saw that this was a rare condition (sacrococcygeal hernia) and few doctors knew anything about it. I went to the neurosurgeon that did my tailbone removal and he was baffled, called the GI surgeon I had seen earlier, and they both wanted an MRI. Then I went to the GI surgeon again, and he said that the MRI didn't show anything (!!!!). He examined me and thought that it WAS a hernia but wanted to defacography. The defacography conclusively showed a major herniated area in my large intestine, near my rectum.

The GI surgeon didn't know what to do with it, so he suggested sending me to either Mayo or Barnes Jewish in St. Louis. I chose Barnes, and saw an excellent GI surgeon with amazing credentials, and he was willing to do the mesh repair. He said that if the mesh repair alone did not make things work right again with emptying, he would go in and also suspend the lower part of my large intestine where the hernia was.

Two months out from surgery, I have no pain and normal bowel function. I am thinking this may finally be the fix I've been wanting.

It's been a journey, for sure!

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