Constant tailbone pain

Jacki, USA

Posted 2008-02-03

I've been dealing with tailbone pain for almost three years, since March of 2005. At first the pain was very sporadic and intermittent, but as time went on, the amount of time I experienced the pain to the severity of the pain has increased dramatically. There was no trauma to the coccyx/sacrum area at that time.

I first started to get this checked out in June of 2007. I went to a colorectal specialist, as I thought I had a pilonidal cyst in my pilonidal sinus at the top of my buttcrack. Upon investigating, the doctor said no cyst, so I was back at square one.

In September, I began the process of figuring out the proper pathways to treatment, starting with the referral from the PCP for the orthopedic, to a much-needed appointment with the orthopedic this upcoming week. My PCP sent me for an x-ray to rule out any breakages (duh, I knew if it had been broken, it'd be healed by now). I remember my PCP looking at me like I had six heads when I told him about the pain.

Well, with the orthopedic, in the first visit, he sent me to go to physical therapy. I did not go because my finances simply could not handle that much money per month for something that I know won't work. He also sent me for an MRI, which I did not do, simply because I knew it'd be another waste of time and effort. On his referral for the MRI, he had written "bony lesion", which leads me to believe he felt something with a physical exam.

From September to now, my condition has deteriorated to the point where the pain is completely constant when I sit, and now, I'm even having pain while walking. I spend my nights up crying because of the pain. One of the worst parts of this condition is the way doctors think you're out of your mind with this pain. I am so worried that the orthopedic specialist will not perform cortisone injections, but I simply cannot continue living in this constant pain. Any thoughts or comments from other people's experiences would be wonderful. Thanks


Update, 2008-06-15

I went on April 9 2008 for a ganglion impar nerve block with Dr Kalliny, New Jersey (see Doctors and specialists in the USA), and had major success. I went to the hospital since the procedure needed to be done under fluoroscopy, and the procedure was very easy. I had an IV in my hand to administer the anesthesia, and sat and waited to be called back for the procedure.

I got called back to the operating room to have the procedure done, which took a matter of 15 minutes. The anesthesia was a twilight sleep, however, I do not remember any of the procedure. I was completely out.

I didn't even need to remove jewelry, and was able to go in the OR with my clothing on. After the procedure, my ride took me home, and I slept for the rest of the day. I was unable to go to work, drive, operate heavy machinery, etc, for the rest of the day due to the anesthesia, but recovery was nothing beyond that. The injection site was very small, and needed to be cleaned for the first few days following the injection. I also needed an antibiotic to prevent any infection since the injection was performed in an area that is at risk for infection.

After the local anesthesia wore off, I could still feel pain, but maximum relief was felt approximately 5 days after the injection. Prior to the injection, my pain was a 12 on a 10-point scale. Now, my pain is about a 4, but for about 6-7 weeks following the injection, the pain was a 1-2, depending on the day. It's amazing how much the pain was reduced.

I'm scheduled for another injection on 6/18, to prevent any pain from coming back to the extreme it was. It's amazing what relief can be found when you know what you're looking for.

My best advice is to never give up on this. This pain IS real, it's not made up or fake, and you WILL find someone who knows what they're doing and that knows how to treat it. My search took 3 years to complete, but my resilience and determination led to a solution that worked wonders for me. Never ever give up on this!

Update, 2008-11-09

Well, around September, my pain came back. I was unable to get to the doctor until last week. When I went back to Dr. Kalliny, he said we were going to do the same procedure, however, we were going to destroy the nerves in the ganglion impar. He said recovery time is the same, however, I'll be knocked out again. I really thought this crap was over, but I was wrong. My pain is back to 10. I'm more nervous about this procedure because of the cauterization, so I'll keep the site posted. If anyone knows the name of this procedure, let me know as I did not get the medical name of it from the doctor.

Update, 2008-12-07

The procedure I had is called a radiofrequency (RF) rhizotomy on the ganglion impar. I had two ganglion impar nerve blocks, which turned out to be both therapeutic and diagnostic. I received tremendous relief from the injection, and since the injection offered relief, the pain management doctor knew that site was the source of the pain.

A good pain management specialist will NOT perform a RF on the nerves without two ganglion impar nerve blocks. Run from any one who does!!! My orthopedic referred me to a pain management specialist, Dr. Kalliny, who is a lifesaver!!! I never went to a neurologist for the problems. My doctor did have numerous successful coccydynia treatments, so I completely trusted him. The successful yet unsuccessful (successful in that they temporarily relieve pain, yet unsuccessful in that they do not offer long term relief), two blocks allow for proper diagnostic value. When I visited the pain management specialist after my last nerve block, he stated the next step in this journey was a RF rhizotomy. Basically, the procedure involved cauterizing nerves from high powered radiofrequency waves 2-3 times during the procedure. The procedure is done under fluroscopy x-ray guidance in the hospital because of the sensitive nature of the area.

Basically, I went to the outpatient area of my local hospital on Wednesday. I was given an IV which would eventually give me anesthesia. I was asked to remove all clothing and jewelry. After about 3 hours of waiting (I was the last procedure for the day), I was called back to the OR. I laid down on my tummy while they sterilized the area. The anesthesiologist gave me my medicine, and although I was out of it, I was still awake. I barely remember anything. I remember hearing the staff talking, and feeling some mild pain and pressure, but that's it. The procedure took a 1/2 hour to complete.

After the anesthesia wore off, I took a prescribed pain killer to help me sleep. The next day, I was in so much agony, I couldn't sit. I could not believe the amount of pain. I spent the day on oxycodone's to help relieve the pain. On a scale of 1-10, I'd say my pain was a 13. Friday was the same. I felt absolutely horrible. Saturday and Sunday, I felt unbelievably well. No pain, and no pain medication. Today (12/1) was varied. I started the day off a 5, but as the day wore on, I made it to about a 2. Currently, I'm about a 2.5-3 on the pain scale.

My advice is not complete at this moment as I have not experienced the full therapeutic benefits of the rhizotomy. These benefits will not be achieved until 2 weeks post-op, which is next Wednesday. My only concern was not realizing recovery was that important. I tried too quickly to get back to normal living, as you can do with a GI nerve block, and I think that prolonged my suffering and made it worse. I was also worried about the oxycodones. However, the nurse from the hospital told me not to worry about addiction as this medication is taken to provide a flat level of pain. Not taking them regularly when I was in severe pain caused for fluctuations in the pain rather than having a steady level of low pain. However, some people do experience stronger and more severe pain post-op. It's just a side effect of the procedure. I will update once more next Wednesday to let you all know the final therapeutic benefits. Thank you.


Update, 2010-01-03

I had another RFA on 12/26/08 since I was still in some pain, and actually was relieved for about 6 months. Dr. Kalliny said the pain recurrence could be due to an incomplete RFA, so he went back in and recauterized the area. However, I lost my insurance at the end of 2008, and was unable to return to Dr. Kalliny in NJ. I moved to PA a few weeks ago, and thankfully, my new job at a local hospital gifted me with insurance. The first thing I did was seek out a pain management since the pain is probably the worst its ever been. I called around to numerous pain management offices to see if any have experience with coccydynia, and was referred to Southeast Pain Management in Willow Grove PA. Dr. Woo has some experience with coccydynia, and has even performed RFA's on the coccyx and sacrum. I have a RFA scheduled for tomorrow at 2, so I will post an update in 2 weeks time to update on any relief. It's just so damn do something, it works, then it stops, and you have to try something else.

I've decided, though, that if this persists, I'm going to visit Dr. Foye. He's about 2 hours from me. I am much appreciative of the help I've received so far in this 'journey', but I feel like I'm running around in circles.


Update, 2015-05-10

So here I am at 30, 10 years after I started having pain. In October 2010, I visited Dr Foye (I'm lucky to live in the Philadelphia area so he's close), and we devised a treatment plan of cryogenic treatment of the pain, however, I became pregnant with my first son before we got started. Throughout the pregnancy, I was free from pain, however, I was scared that during childbirth, I'd injured myself more. My first son was born in August 2011 without any complications. I further went on to have another son in October 2012.

Miraculously, I was pain free. For years! I fully expected to be in agony after giving birth, however, my coccydynia went away.

Flash forward to about 4 weeks ago, and the idiopathic pain returned. I had done nothing different other than adding more squats to my exercise regiment, but I had been successfully incorporating squats into my workouts for years.

I sit here tonight, 10 years later, in sheer agony. Something happened to me this week that exacerbated the pain to be 10x worse than before. I'm not only hurting, but I'm incredibly defeated in knowing that I have to start from square one again. I honestly think I'm just going to skip the nonsense orthopedics, pain management, etc and call Dr Foye on Monday. Hopefully, I just traumatized the area and it will be better soon, however given my horrible history with coccydynia, I doubt it.

Note from Jon Miles:

I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.

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