Coccygectomy experience and doctor referral

Tricia, USA -

Posted 2015-10-25

I am a 40 year old woman who is normally healthy and active. However, I have a history of neck pain from a herniated disc and sciatica. After a terrible virus during Christmas-time, 2014, my low back and neck pain acted up. This time it was really bad. I wondered if it had to do with the virus. The pain went down my left side from my neck and shoulder blade area into my left arm and from my left buttocks down my left leg, I also had tingling in my left hand and left foot. I sought treatment from my chiropractor as usual and also saw the PA at my doctor's office who prescribed and ant inflammatory and muscle relaxant. Still no relief. I saw the chiropractor again and he gave me a strong adjustment that put me in severe pain, so much that I called him that same afternoon to see if he could fix what he had done. He worked on me some more and suggested that since the pain was all on my left and getting worse with adjustments it could be a central nervous system issue.

My birthday was that weekend, and we had plans to visit the local mountains. I was hopeful that the anti-inflammatory medication and muscle relaxants would help and that the pain wouldn't spoil our trip but the car-ride was excruciating. I had to lay down in the back and the whole weekend I was miserable.

When I returned, I saw the PA again and she prescribed Norco and referred me to a spine doctor. I had X-rays and an MRI that showed 2 herniated discs in my neck and 2 in my lumbar spine. I knew I had one herniated disc in my neck prior, but the others were new. He prescribed a nerve test (that came back normal) and an epidural in my neck that helped but I still had severe pain in my buttocks that radiated down my leg. He didn't think I should be in that much pain based on the images and I was passed around from doctor to doctor. The pain meds didn't help. I was told I had fibromyalgia and they started treating me for that. I ended up in the ER multiple times, once I had to call a neighbor to help me because I was home alone with my kids and felt like I was going to pass out, my extremities went numb because I was hyperventilating from the pain so she called 911.

I had to advocate for myself time and time again because the doctor's didn't know where the pain was coming from. The initial spine surgeon thought that some of my symptoms (weakness in my big toe) were "factitious" and that my MRIs and initial nerve test did not reveal anything that would cause the severe pain I described. So the doctors I was referred to after him judged me from my medical records and thought I was either a drug seeker or I had mental issues. It was devastating to be in so much pain and feel like the specialists didn't believe me.

As a result, the pain doctor he referred me to said I shouldn't be in so much pain and wanted to taper me of the pain medication. I told him I couldn't go off the medication so he referred me to a doctor who put me on suboxone, (medication for people addicted to opiates). I was sleeve states and humiliated to go on the medication because I wasn't addicted, I really was in severe pain. But the suboxone actually helped the pain a lot better than Norco. During one of my ER visits, a doctor gave me Ativan (the pain doctor said that shouldn't be used for pain, but the neurologist said it helped me because it relaxed the muscles) which made be pain medicine last. So I was able to function by taking a combination of suboxone, Ativan, and Neurontin. As much as I hated being beholden to medications, it was necessary to take care of my family. I couldn't drive for a while and had help from friends and neighbors, but gradually I acquired a tolerance to the medications and functioned normally on them.

I persuaded the PA at my doctors office to examine me for piriformis syndrome and she sent me to an orthopedic doctor who did pelvic X-rays that looked normal (because they didn't show my tailbone) and he suggested I get a lumbar epidural because I had herniated discs in locations that would cause sciatica. I requested an MRI of my pelvis and that came back essentially normal (again it did not capture my tailbone). I did the epidural at L4-5. In the meantime, I saw a neurologist who ordered another nerve test which showed nerve root irritability at S1-S2, so then I had a nerve block there.

**The neurologist that performs the nerve test can make all the difference -- make sure you go to a good one who will listen to you about your symptoms. The second one put needles in my back and buttocks because he listened to me, where the first didn't so his findings were inaccurate.**

None of the injections helped the pain. Even though I said the pain was in my buttocks and that it hurt to sit and was excruciating to ride in a car, they never imaged low enough to see my tailbone!!!! Then, in June, I was pressing on my sacrum to feel where the pain was, and I felt a lump. Finally! Something physical to show my doctor. He felt it too and ordered a CAT Scan of the low sacrum. The image showed my coccyx was angulated 60%.

My doctor referred me to another spine surgeon who recommended a caudal block. He told me that he doesn't do coccygectomies because they pose a high risk for infection and the tailbone is so close to the colon and rectum, they could be perforated during the procedure. He said no one does them. His PA told me about a place that did pelvic floor therapy and that they could adjust my tailbone, but the surgeon said it would be excruciating and did not recommend it. I asked if it could be done under anesthesia, he said he didn't know of anyone who did that. I had the caudal block and it didn't help. Then I tried the pelvic floor therapy at Womanology in Newport Beach, CA. The treatments I had were external and internal. They were actually very gentle, however I was in more pain for days after. My tailbone moved around and was not stabilized by the three treatments I had.

I asked the PA to research a surgeon who would do the surgery. I was sent to a neurosurgeon who had many awards and who had attended Ivy League Schools. I really liked him, he said it was a simple procedure and that he had done 3-4 of them over the past few years. I was so thrilled he would do the surgery, I scheduled it right away. Then I realized I had some questions about the recovery period and his patients' experience, so I emailed him. His response was vague and after questioning his assistant, I found out that all of his patients who had this procedure had "borderline" pain relief.

**Make sure you ask your surgeon how many times they have done the procedure and what the outcome was for their patients. Also be sure to ask them how they will perform the surgery and what to expect following and about the recovery period. **

I hated to postpone the surgery as I was desperate for relief. I then found this site and decided to get a consult from Dr. Stamos (Colorectal Surgeon) at UCI Medical Center. His nurse said he was going to be gone for a month and recommended his colleague Dr. Mills (see Doctors and specialists in the USA, California) who had been doing them lately and -- in fact -- one of his patients had just called 2 days post surgery and her tailbone pain was gone. I met with him and he said he needed to do a physical exam to see if I was a candidate for the surgery, so he did a rectal exam to see if my tailbone moved and if that was the source of the pain. Mine was true of both criteria. **Make sure your surgeon gives you a physical exam, it will indicate whether you would be a successful candidate for a coccyegectomy. ** I inquired about the number of coccygectomies he had done and if they provided pain relief for his patients. He said he learned the procedure from Dr. Stamos last year, had done 3-4 of these procedures in less than a year and all except the most recent were doing well at their two-week post op. appointment. So he inferred that they were continuing to do well. He said his most recent was in the office that same day and was in tears because she still had pain at 4 weeks post-op, but he said it was surgical pain, the pain from her tailbone was gone. I asked if he had to remove the tailbone in any of his cancer treatment surgeries and he said, "yes, and they didn't have pain". So...that was more experience. I also asked what he would do exactly in the surgery, and I was satisfied with his answer. He said it would be an outpatient procedure (the neurosurgeon said this too) he would make about a 2-inch incision on one of my cheeks, and then cut open the sheath around the coccyx and remove it and then shave the bone he detached it from, so it was smooth, then sew up the sheath with dissolvable stitches, and sew the skin with dissolvable stitches and put glue over those to make the incision waterproof. He said I could shower after the procedure because the glue sealed the incision and I didn't need a waterproof bandage.

After living with severe pain for 9 months, all the while carrying on my duties as a stay-at-home mom for my 3 & 5 year old sons without much time for rest, I couldn't bear postponing my surgery for Dr. Stamos -- so I scheduled the surgery a month out with Dr. Mills and was also put on the cancellation list. His staff was kind enough to work me into his schedule 2 weeks earlier. I highly recommend Dr. Mills at this point, he has the most amazing smile and bedside manner.

I was in a lot of pain after the surgery (level 8) but less than the tailbone pain (10+). It felt like that area was empty. The surgery pain felt like bone pain. I was able to sleep on my side it's hard for me to stay on my stomach, but I recommend that if you can do it because my hips got sore. Turning over from side to side to get comfortable hurt. I was in bed for 4 days getting up for small stints. Then I would have a day where I was up and about more followed by a day in bed. I will say the pain got better about day 6-7 and then worse for a few days. I was in bed mostly day 9-11, but I think that was also because after the surgery I had forgotten to take the tricyclic anti-depressant I was put on for "fibromyalgia" and I had withdrawals until I remembered to take it. At Day 12, I didn't need pain medication during the night, the pain was at a 4 or 5. I did have some bad muscle spasms yesterday as I started doing more, I am hoping that will subside. He put the incision on my right cheek near my crack and hidden from sight and it looks really good.

Update 2017-12-17

2 weeks after my surgery I felt like part of the pain had been "removed" and the pain left in that area was at a 5. I continue to have some tailbone pain, but I can sit for 1-2 hours on a soft chair. I am still on Suboxone, Nuerontin, and Ativan for pain but I have multiple things going on with my neck and back that could be contributing to the tailbone pain. When I get my cortisone epidurals or take Prednisone, my pain is minimal so I think inflammation is the culprit.

I also have stenosis and spinal cord compression in my neck and a pinched nerve from a herniated disc at L 3-4 and a herpes-type virus along my spine (HSV-1, herpes zoster or Epstein Barr) that was causing severe breakthrough pain every time I would get a cold sore on my lip. I believe the virus is causing inflammation in my body and along my spine. The Valtrex helps that breakthrough pain so I now take it daily for suppressive therapy, but if I miss a couple days I pay for it!

I am having a double disc-replacement surgery at C 3-4 and C 5-6 because my spinal canal is compressed to 7 mm in a couple days. It should help my neck, shoulder, and scapula pain and weakness. We will see if that helps my low back, tailbone and leg pain too.

I will likely have a discectomy in my low back too.

Dr. Daniel Le is an amazing anesthesiologist in Newport Beach, CA. He does my epidurals which really help. He also found the pinched nerve on my MRI that the radiologist missed for years! He has a wonderful bedside manner and is precise with his injections. He uses nurse sedation so it is not painful.

I will give you another update you all after I recover from my next surgery.

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