Bob Knetl - email@example.com or firstname.lastname@example.org
Original posting, 2002-01-01:
Jon- Great resource and I am so glad I found it and you maintain it. It has given me some sense of hope in my times of despair.
I have been suffering from coccydynia for about 6 months. Up until only a few weeks ago have I found no control of the discomfort and pain and I hope my solution, which I hope will be a long-term one, can provide some hope to the rest of you.
I have used a practitioner in the Washington DC area who has helped me previously with tendonitis and rotator cuff problems though acupuncture. He is an osteopath named Dr Gary Kaplan, and his practice, The Kaplan Clinic in Arlington, VA, specializes in pain management as well as family practice. While an osteopath, he also specializes and combines acupuncture and holistic medicine in his treatment. I have no idea how I came down with coccydynia, but I must say it has become debilitating - beyond anything I have ever experienced. I am a 52-year old male engineer, otherwise in very good health. I first noticed the problem during frequent flights from DC to San Diego and presumed at the time, the problem was caused by a metal bar set in the back of the Airbus seats that United Airlines flies. I'm not sure if that is the case but, the pain grew more and more intense and I ended up at the Kaplan's clinic.
Dr Kaplan indicated that he had treated other coccydynia cases some with great success in some and less in others. He had about an 80% success rate with treating coccydynia. The other 20% were treated with pain medication. He indicated the treatment had to be aggressive as it was a difficult problem to treat. I focused on the potential positive cases hoping to ignore the possibility that I could not be successfully treated. Over the first few months I came to really believing that I was doomed to live with the pain and a donut pillow.
The course of treatment was fairly standard at first. Initially he tried manual stimulation of the ligament around the coccyx combining this with acupuncture/electrical stimulation of the needles. Then I received 3 injections of a corticosteroid over the course of three weeks with an additional appointment each week which focused on manual stimulation of the coccyx combined with acupuncture. I had some relief, but the pain eventually came back.
I had an MRI after the initial corticosteroid injections and it showed a bulged L3 or L4 disc (I cannot remember which one). Dr Kaplan, my osteopath, said that he was not sure if that was specifically the problem as about 15-20% of the population if MRI'd could have a disc problem and nor suffer any pain. He did say in his treatment of coccydynia most patients have had a disc problem (he injected mine with a corticosteroid, but it provided no relief), but treating just the disk does not help the coccydynia. He said that they are unsure of the cause and effect, but there appears to be some link.
He then tried a tri-cyclic antidepressants. I cannot recall the name of the first one, but it did not work for me after almost 2 1/2 months on it (he improvement might take as long as 3 months). He also injected me once again with corticosteroid one time after I experienced discomfort (a few months after my last injection of a corticosteroid) but it had no impact on the pain. He then took me off the original anti-depressant and put me on another, called Effexor ultimately at a dosage of 150mg per day after one week. I took this and had twice weekly acupuncture treatments with/ electrical stimulation of the needles and it seemed to be working for a few weeks. Then I went on a another trip and the pain came back with a vengeance - level 7/8.
At this point he added Neurontin (Gabapenin), building my dosage up to 900mg/day after 6 days. He combined this with shots of Sarpin (see http://www.healthandage.com/html/res/pdr/html/35300600.htm), a sterile aqueous solution of soluble salts of the Pitcher Plant. He indicated that the Sarapin worked much like a corticosteroid, however it could be used repeatedly (up to 15 injections) as it did not accumulate in any organs like a corticosteroid.
Within two days of being on the Neutontin (after one injection of Sarapin) my pain diminished to almost nothing. He indicated that this was not unusual especially for Neutontin. (My cousin who is a nurse indicated the drug, an anti-seizure medication, is used on burn victims to help block pain.) I've been at this level for three week and have received injections of Sarapin each week. This week the pain (really more discomfort, as it is so slight) has increased at times, but no where near the level that it had been. The reactions I have had for the combination of drugs is dizziness when I get up or look up quickly, as well as constipation (fiber laxative pills work well) and ejaculatory problems - all of which have diminished over time. With the Neurontin I have suffered some short term memory loss, more of an irritation to my wife than to anyone else.
My understanding is that pain normally acts in a negative feedback loop to attack pain. With Coccydynia the feedback loop is positive and continues to grow unabated. I guess the idea is to find a solution to break the positive cycle of pain and then take the drugs/treatment for a extended period to remain pain-free to allow the body to heal and "forget" the pain cycle. As an engineer this seemed logical. Also, since I am not a physicist I do not care why something works, only that it can (an engineer's attempt at humor Jon).
I offer my experience (so far) as hope to all who read use your site. At one point my pain was so bad I asked about a coccygectomy. Dr Kaplan said we were no where near considering doing that (he's not a surgeon, but an osteopath and this seems understandable) and indicated that removal of the coccyx had the other side effects that one would have to live with. He said that sitting hard down on your bottom and essentially your spine without a tailbone would leave someone with a headache that would make a serious migraine seem minor. From the perspective of my pain and my engineering background, I cannot see how the coccyx removal could be the total solution when the pain is in the ligaments/nerves surrounding it which I assume would be left in place following removal. Of course, I do not rule anything out from such an insidious aliment.
Note from Jon Miles:
I had not come across Sarapin before, so I looked it up on the internet. It is a substance which is injected to cure chronic pain, sometimes as part of prolotherapy treatment, and sometimes as part of myofascial trigger point treatment. It is not understood how Sarapin works.A prolotherapy site said: We use an alkaline extract of the pitcher plant called Sarapin. The exact mechanism of how Sarapin relieves pain is unknown but is felt to be due to the ammonium sulfate concentrate in the extract of the plant. It is plausible that this ammonium sulfate compound, or some yet unidentifiable biological agent in the pitcher plant, causes a gentle irritation which adds to the proliferant effect of the solution when Sarapin is added.
A trigger point website said: The most effective treatment I have found for chronic, severe myofascial trigger point (MTP) pain syndrome is injection of the trigger points using a combination of local anesthetic, calcium and most importantly an extract of the pitcher plant called Sarapin. The calcium replenishes the muscle cells with calcium which has leaked out predisposing the spasm. The Sarapin has a unique action of desensitizing and deactivating the rapid firing pain fibers, thereby breaking the pain-spasm cycle, and blocking pain impulses to the brain. After injecting several MTPs in a session, patients become relaxed and less anxious.
Update, posted 2002-05-19:
I am currently on 2400 mg of neurontin (800 mg 3 times a day) and my pain level is 1-2 down from 7-8 out of 10. I've been at this level for 2 months. Before that my pain level varied between 1-5. I have not needed a sarapin injection in 2 months and only see my doctor once a month, versus twice a week at the worst.
I see so many postings on this site for doctors to remove the coccyx. I must say I am still troubled by it:
For those seeking non-surgical option contact Dr Gary Kaplan of Arlington, VA, a pain management specialist who is also an osteopath. He can be reached at 703-532-4892. I am sure he could refer those out of the area to another practitioner.
Update 2 - 2002-09-22:
I too echo Judy Isaacson's posting about yoga. It has really helped relax me and stretched the area around the pelvic floor. I have been doing it for 2 months and I notice a marked improvement. Wish I would have tried it sooner.
Also, I would like to give you a non-laxative home remedy given to me by my doctor which helped alleviate constipation I experienced caused by the 2400 mg/day neurontin I am taking. The SRI's had a similar effect on me. It can be used along with stool softeners without medical issues inherent with laxatives.
Viola - regularity