Coccyx pain

[Katie]

I had severe pain there as well after falling on ice. I tried several treatments including steroid injections by an Ortho surgeon, all without success.

What cured me was a manipulation by an osteopath. She did a rectal exam and it turns out mine was dislocated. After a quick adjustment, I walked out with almost no pain after suffering for a year. It remained a bit tender for about a week, then the pain disappeared completely. You might look into this, but not all of them are qualified for this. Check around for a good one.

[Maria]

Neurontin and Sarapin relieved pain
Bob Knetl - knetl@comcast.net or bob2k@comasct.net

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...l/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.

Bob Knetl

Arlington, VA

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:

1.Based on my doctor's feedback on his success in treating overall (I am sure part of the reason is also because he is NOT a surgeon) and he is quite adamant about coccyx removal as a last resort, which he has not had to recommend to date.
2.Because of my success over time. Obviously, I am one data point and I understand how debilitating a condition this is. I just have the impression that some of the writers have jumped to this decision either because if they see a surgeon, operations are what they do when progress is not evident. Or, due to poor medical advice from inexperience with the condition, which hopefully your site alleviate by sharing experience & options.
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.

•2 heads of romaine lettuce washed and ripped into small pieces (just ripped apart)
•Combine lettuce with 3 quart (3 litres) of water and boil down to 1/3 of volume
•Strain lettuce out and discard
•Reserve remaining approx 1 quart (1 litre) of liquid
•Drink 1 cup in the AM and PM (You get used to it after a few days – cold is better I have found)
Viola - regularity

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

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[gail]

I am grateful for all the postings regarding coccyx pain and the various options for treating it. I have had many steroid shots and prolotherapy to my coccyx which haven't worked at all. Two weeks ago I had RF ablation to the coccyx with immediate relief for 1 day. However, I developed intense redness and itchiness in my perianal area that was just as hard to live with as the pain. After a few days the itch and redness went away and the pain returned. I don't know if I had an allergic reaction to the procedure or what. Today I am going to NH to see a doctor who deals with pudendal nerve problems. My problem essentially is pain with sitting and I don't know if it is my coccyx or maybe a pudendal nerve problem. Anyhow, I have been suffering with this pain for 2 1/2 yrs and am desperate for some help. I have also tried Lyrica, neurontin and amytriptiline with minimal relief but the side effects were too much to tolerate for the little relief. I had brain pauses and terrible hand tremors. Still hoping for some relief. Thanks for your comments. Gail

[Maria]

Gail,
I suffered really badly with this type of pain for a very long time. I avoided sitting like the plague for many years. Just now I can sit again tho not for lonnnng periods of time tho long enough to be social which was impossible before.

One of the things that I was told was after my 2nd discectomy scar tissue formed on rt. S1 nerve root. The Ortho said that all the sacral nerve roots exit the same area so there can be clumping with scar tissue and hence the diffuse symptoms I experienced which were also severe low back pain and burning pain thru my buttocks and legs to feet. The pain was pretty horrific for a long time (a year) and then slowly and I do mean slowly (over 5 years) tapered off only remaining in some places (perianal) and quads when walking distances. Now that's pretty much alleviated however I did have an "episode" recently that has exaccerbated the coccyx pain along with low back pain and I think it's related to my bike riding which I haven't done in ages and when I did it was with a heavier bicycle that probably absorbed more shock.

Oh well.. live and learn. I was always afraid to have more surgery done after this pain abated in fears of exaccerbating it as it can be brutal.

Please continue to post your trials to alleviate this pain. I'm sure it will be helpful to others. When I was experiencing this type of pain the doctors pretty much had nothing to offer tho a really excellent PT that worked specifically with chronic pain patients worked with me alot in terms of soft tissue massage and release.

Good luck

[dridobits]

hi Gail, I'm so sorry you are having this type of pain. I was thrown in a dancing accident and landed on my tailbone and had many rough years with this. Did you specifically get a caudal block? After a number of years, my tailbone pain moved three inches up which made a huge difference. Try to never sit on anything hard and try different back pillows to sit on where the tailbone area is cut out so your tailbone is not on top of anything. Lately, Im doing monster experiments with all kinds of pillows and support systems (especially in a car or plane). These things are really helping me.