Dave - firstname.lastname@example.org
Sorry for the long story here; it's been such a terrible journey and my wife thought I should document it. I chose to document it here so that others know that there can be a resolution to this issue.
I'm a motorcycle rider and a fan of long rides. I would commonly ride an entire day with very brief rest periods. Eventually I noticed that at the end of the long ride that my tailbone hurt, but the pain I experienced would go away within a few minutes or so. I also sit for prolonged periods at my desk at work and would experience short periods of pain upon standing after a meeting.
In the spring of 2010 I noticed that it was taking longer and longer for the pain to resolve after rides and after work. I started with Motrin and ice, but the pain was definitely getting worse.
I was now at a point where I could no longer ride the motorcycle (which is my main transportation to get to work) and any sitting for even a brief period of time I experienced pain while seated and then sharp pain immediately upon standing. Walking was not an issue and pain was only an issue while sleeping if I moved to roll over. I could sit leaning forward, but could put no pressure at all on my tailbone (sit bones).
I was unable to sit at a restaurant for dinner, could not sit at work, couldn't go to ball games, or ride in any vehicle except my truck (it has cushy seats).
When I was 17, I had a pilonidal cyst which had to be drained. At that time it was recommended that it be removed, but I elected not to do the surgery hoping that it wouldn't come back. I associated the pain this time around to the cyst having returned.
I saw my GP for the tailbone pain as it was now unbearable and mentioned the former cyst issue. Thinking it was the return of the cyst; X-rays and an MRI were ordered. Both came back normal with the MRI indicating some vascular instances; we assumed the cyst.
My GP referred me to a surgeon for removal of the cyst. The surgeon indicated that she had performed several of these and thought that this would resolve my pain. I was scheduled for outpatient surgery in Sept 2010. I was continuing to use prescribed anti-inflammatory medications, neck cushions, tailbone cushions, and even used a cushion that new moms use for nursing (it amazingly worked the best).
Work was able to accommodate me by providing me with a standing desk; this is a desk that is electric and can go up and down depending upon whether I want to stand or sit. Very nice to stand and work, but the excessive standing was starting to take its toll on my knees.
I had the cyst removal surgery as an outpatient. During recovery I asked the surgeon how it went as was utterly amazed when she said that she could not find a cyst. All she found was some chronically inflamed tissue about the size of my little finger that she removed. Again, no cyst and I was very disappointed. She indicated before the surgery that it would be about a 3-4 week recovery and as I had a family trip scheduled for New York she said that I could go and it should be no problem.
Recovery from this surgery proved to be a little more than anticipated. Right before my family vacation, my incision "de-hissed." In short, it was not healing as it should and actually split open. I went into the surgeon's office and was restitched days before the trip.
With cushions in hand, I did make the round-trip flight to New York (from California) and did it mostly standing up in the back of the plane. Thank goodness my wife is a flight attendant and was able to garner support from the flight crew to allow me to stand in their work area. I'm wondering if anyone else has flown standing up for such a distance as I have – a Guiness Record perhaps?
I'm healing well but still experiencing the same pain that I originally had so I went back to my GP. Thinking now that it must be neurological and possibly muscle related as well, he referred me to a neurologist.
The neurologist suggested that the piraformis muscle might be causing the issue and referred me to a pain specialist in the same office. The neurologist stated that there were several things that could be done to possibly resolve the pain including an injection, but that he'd leave the course of treatment up to the pain specialist.
On my own at this time, I started seeing an acupuncturist and while initially he was able to calm my pain issue, the treatments eventually became ineffective.
I found coccyx.org and read the many stories of what I found to be my fellow sufferers. I researched everything I could find about this type of pain and figured out through this site that I was suffering from coccyxdania.
My visit to the pain specialist was remarkable. The specialist immediately stated that I was suffering from coccyxdania. I knew at that point that I was getting somewhere. He stated that it could also be the piraformis muscle that could be causing this issue so he ordered physical therapy to see if we could get the muscle to calm down and solve the pain.
The pain specialist gave me samples of a lidocaine patch that seemed to have an effect on the pain. With the samples gone, he prescribed them to me. I continued to wear the patches 12 hrs on and 12 hrs off.
December 2010 – January 2011
Physical therapy was prescribed for twice a week with stretching exercises for home. After four weeks of the therapy the pain was not getting better, but worse. I'd barely recover from one session when I had to return for another. I decided on my own to stop the therapy and returned to the pain specialist for my return appointment. I advised the pain specialist that I discontinued the therapy and the reason why and he stated that he was sorry it didn't work but that we needed to give it a try.
At this point, it seemed as if he was about to give up. He gave me this impression as he was not suggesting anything further that could be done. Through this site I knew that there were other options such as injection under fluoroscope as well as what had been stated by the neurologist. I stated that I wanted an injection and that I considered this the next step. He stated that he does this for many of his patients and how everyone is different. He stated that it could be a one time thing or that I'd have to come back every once in awhile. He was concerned with my previous surgery and the problem I had with the incision. Before he would do an injection, I would have to return to my surgeon for review of my case; just in case something happened so that someone would be familiar with my situation and my incision.
I called the surgeon's office to learn that she had been deployed to Iraq and would not return until after April 2011. I was referred to her associate's office. The associate's office stated that I needed a referral before I could be seen. I called the pain specialist office for referral and was told that I would have to be referred by my GP. I messaged my GP and he stated to make an appt with him immediately.
I attended my appointment with my GP. He apologized profusely about the hoops that I had to go through in order to get this issue resolved. He concurred that an injection would help if not resolve the issue. He also stated that the pain specialist was being perhaps overly cautious by wanting the surgeon to look at the incision before proceeding. To expedite the process, my GP who knows the associate surgeon messaged him directly. The next day I received a call from the associate surgeon's office for an appointment the following day.
The appointment with the associate surgeon lasted approximately 5 mins. He said I was good to go with the injection.
By suggestion from my GP, I went to a local "Compounding Pharmacy." He stated ask the Pharmacist if they could come up with something and if so to fax over a prescription and he was sign it and fax it back. The compounding pharmacy makes a medication by mixing various ingredients that would normally be taken individually. Care is taken for no adverse interactions. The pharmacist said that he could come up with something, but that it would probably not be covered under insurance. He provided me with a one ounce tube of cream that is lidocaine and a mixture of anti-inflammatory and tranquilizers. He stated it's very strong and to use only a pea sized drop per application; it did reduce the pain substantially and I used this until the injection.
I also sought out a chiropractor that specialized in tailbone pain and was able to find one close to my home. After three somewhat successful appointments, he stated that he would like to have my wife accompany me to the next appointment so that he could show her some techniques to apply to me. At this next appointment he sprung the cost of treatments over the next year and the available payment plans. I didn't make a return appointment and amazingly he didn't contact me inquiring as to why I hadn't.
I called the pain specialist's office to inquire about an appointment to have the injection. With my pre-requisites completed, the office indicated that the injection could be done.
The next week I was in the injection office being prepped. In the room next to me was a lady that was about to have the same procedure. The pain specialist indicated that she has this done from time to time when the pain comes back and she has to travel. I was encouraged that this might be the resolution that I've been seeking all this time.
The injection was done with no issues with my incision. The pain specialist said that he was able to go around the incision and that he got a "good spread" on the scope of the cortisone and lidocaine. I was initially sore, but later that afternoon I had very little pain upon sitting or immediately upon standing. However, three days after the injection the pain was worse. I was discouraged to say the least, but I had expected this by reading stories on this site. Then one morning I awoke to no pain whatsoever….and it has continued to this day.
I continue to be cautious with my riding times, sitting at work etc. I take breaks from sitting and continue to sit on cushions as I do not want this pain to come back.