Annette Haas - firstname.lastname@example.org
Original posting, 2002-09-29:
I am a Danish woman, who has suffered with tailbone pains since 1992, when I fell from a chair and broke it. In 1993 I unfortunately had a surgery, where the specialist removed only the broken part . . . which was 1 1/2 joints of 3 I have.
I have daily pains ever after, and now for 10 years. The surgery made it much worse. I have tried all the kinds of pillows we have in Denmark, but I haven't met ONE Dane who has the same problems as me. Local authorities, insurance companies and people in general, don't believe how many daily pains I have in my life. Not being able to sit down for 10 years has changed my life completely and caused me depression too. I have had to have a special couch arranged in our car, so I can lie down, when my husband drives the car. The only way I can be transported. I have a picture of the arrangements if any are interested. Other problems is the social life, which disappears. I can't go to cinemas, theatres, family parties and other social things.
Hope I can get help from the people, who know what a HELL it is to have these kinds of pains, and how it can change your life completely. I am interested in all kind of advices, pillows to buy, chairs, medicine, herbs medicine...whatever.....and maybe talk to people (or email) with the same 10 year's tailbone problem ......I think it will helpful if any other than me has been through the same as me, and tell me ;(((
I think I am the only one in Denmark having these problems and pains, and it's NOT nice to feel this way. HELP!!
Best regards, Annette Haas - Denmark
The full story, posted 2002-10-13:
I will try to tell you all about my coccyx story from the beginning in 1992 till now. I hope you understand most of my English - remember I am Danish and have been in Denmark all of my entire life :0) So here it goes:
I was born in 1951 in Copenhagen. I started my education after my last year in school in 1968 as a book-keeper (Finance) and a secretary, and have educated myself with other subjects over the years regarding Finance, Leadership , Organization etc. etc. I have been working from 1969-1990, most of the years in an American Medical Company called UPJOHN. When I was about 18 my neck problems started . . . etc, etc. I will try to describe my surgeries:
1971- After X-rays of my neck doctors found out that one of my bones in my neck was too long, so it made pressure on the nerves down in my left arm and fingers. I had a surgery, where they moved a cervical muscle instead of cut in the bone itself.
1972- I still had a lot of pains in my neck, so another hospital tried to give me a special kind of X-RAYS . . . ..they took out cerebral fluid and blow in air . . . so they could see the damaged disc in front of my neck. When they blow in air . . I thought that my head would explode. It was very painful. I had a dangerous and huge operation in February where they drilled out the bad disc and operated a new bone in between the two exiting bones, so when it healed, I had in fact ONE BIG bone, instead of three. I had to wear a special "collar" made of foam for several months to protect my neck.
1989 I had had a lot of problems with my left knee for years, so at last I got my first arthroscope examination in my knee. Doctor meant that I had arthrosis in 3rd degree.
1990 After arthroscope examination no. 2 - an Orthopaedist operated my left knee, and scraped out a lot of cartilage and took one sinew too.
1991-92 Three operations more in my left knee - again they scraped out cartilage. I walked on crutches for about 2 1/2 years, and lost my job because of too many days off from work - and received sickness benefits.
1992 I fall from an office chair in my own house in August , while I was writing my personal song for my future husband - with whom I married later that month. The pains from my tailbone started right after the fall, but I managed be married due to pain killers.
1992 Later the I had an X-ray of my tailbone, and I have to say that we in Denmark unfortunately just take the X-ray when people lie down, so the result was that I got the message: "Nothing abnormal". I did not understand because I had so many pains every day, but they "just" called it: Coccydynia, and gave me a "swim ring" to sit at.
1992/93 The rest of 1992 and in the beginning of 1993, I visited all kinds of specialists . . . my pains were indescribable . . and a lot of specialists tried to inject anti-inflammation fluid around and into my tailbone - with no relief at all.
1993 May: I required to see a specialist in Neurosurgery . . and so I did. Unfortunately this time I had no friend or family with me in the room, when I talked to him. I told him about my pains, shown him my X-ray pictures, and asked him if he thought it was broken. He thought that too, that it was broken, when I told him that I had the feeling myself after such a long time. (I have to say that we have surgeries made in public hospitals, where we pay nothing.. (of course we pay via our very high taxes in Denmark). This doctor had his own consultation, but were paid by the authorities- and only made examinations - no operations. Therefore I was very surprised when he suggested to operate me in a PRIVATE hospital, where I should pay the operation myself. (The explanation was that he rented some rooms at a private hospital, where he made surgeries for money). I asked him of course what the result would be - what the WORSE thing was, that could happen. He answered me: "The worse thing that can happen that your situation will be unchanged !" I asked: "That means that an operation will NOT make it worse?" He replied: "Most people get it much better, and some will get it better, and for some few the pains will be unchanged - but not worse!"
I went home and talked it over with my family ( I had a daughter at 11), and agreed that I had to try this operation and pay for it, when the promise from the doctor was that it could NOT be worse!!!!!!! Oh my . . . what a mistake !!!!!!! I have regretted this surgery ever after ;.(
I was operated in May 1993 and stayed at the hospital the entire day, where he operated me.
I was discharged in the evening, and then back home in my own bed. I used already painkillers, but had of course to supplement with STRONG CODEINE tablets. I had to stay in bed for 14 days, before I visited him again. He took out the stitches, and told me about the operation: He had ONLY removed 1 1/2 join - of the three tailbone joins I had . . . ..so he had cut right through one of the bones . . . ..as he said: " There I sat . . . .with 1 1/2 bone dangling in my hand!" I was shocked about his way of speaking, and that he did not operated the whole T-bone out. He said that I should be lucky that it was only a part of it ???!!!????
The next weeks, I still had to lie down and then at last got up and had to use my swim ring. I was very much in pain . . . .as all know . . . .this kind of pains NO ONE in the whole world will understand IF they have NOT tried it !!!!!!!!!!!
One thing I can say for sure: "THIS OPERATION MADE MY PAINS MUCH WORSE!!!!!!!!!"
Over the years after 1993, I have tried sooooo much treatment that I cannot remember them ALL. The pains are not only at the T-bone, but spread all over my buttocks and down in the thighs, where the muscles are like strings. I have to make a mix every day of standing up and trying to sit at all different kind of cushions I have tried, among other things with help from my local O.T. I have never found a cushion, which have helped me . . . so what I use now is 3 cutting outs made of foam rubber . . . .above each other . . .no good at all. I cannot sit for such a long time, and when I am going from sitting to standing up I get the extra pain (like an explosion) and I have to wait before I continue to walk or stand.
I am not able to sit in a car, so we have bought a station wagon, where I have had a couch made IN the car and installed there. I enclose a picture of it to show you all the smart installation. Here I can lie down while my husband drives the car, and he can draw my couch out, like a drawer :0) In this way I can roll out and put my legs to the ground. This is the way I get around since 1993 - and therefore I am always depending on some one can drive me. I have also got heel spur, fibromyalgia and arthrosis in my knees, finger and toes.
In 1994 I had to retire early (after many year's fight against the local authorities ) but I got the lowest payment because a painful T-bone is NOT accepted as an accident in Denmark !!!!!! I also got a very low indemnity from the insurance co., because of the same reason: It's only a tailbone !!! First the gave decided to say that I was just 5 % handicapped, but after 2 years, I managed to get it up to 12 % . . . what I am still not satisfied with. This T-bone accident and pains have changed my life completely.
I have had a lot of treatments over the last 10 years . . . ..here comes some of them:
Medicine, Daily dose:
Twice I have been to a pain hospital, where they only take care of patients, who is giving up regarding pains.
First time was in 1995. I joined a so-called : "Pain course" for three months, i.e. I could not come and join all the lessons and training there, because my local authority would NOT pay for my all my transportation in an ambulance ( the only way to be transported here if you have to lie down). But we were taught how to handle pains by a psychologist and some doctors and had some training in a training room and hot water swimming pool. They tried also to keep our medicine down on a certain level. What I "learned" there was very useful to me: Most of the group suffered with back pains, so we nearly had the same problems in our lives and supported each other, but my medication was NOT good . . . .NOT before or after the course. They did not help me further, with that problem.
Second time I visited a Pain Hospital was in 2000. The doctor suggested I tried tablets against epilepsy (Gabapentin) . . . I tried these tablets with a lot of side effects but they did not help for my T-bone pains at all, so we stopped after some extra months.
Physiotherapy: I have one weekly treatment where the physiotherapist give me massage, manipulate me . . . .or use special techniques at my T-bone and back, buttocks and thighs. My back and neck are often locked in the joins and it is very painful. I have had a lot of MR-scans taken, but the only thing they explain to me is that they can see my T-bone is cut, and that I have a damaged disc between the last loin join and the next bone ( I don't know what it is called in English). Therfore I have been in bed this time for 14 days . . . ..because of the damaged disc worsen my pains in the T-bone area, and I could NOT straighten me up, so I had to use crutches. I could not exist if I did not get that kind of treatment every week. (Rather expensive . . . .but a MUST).
Alternative massage: If I can afford it . . . ..I go to alternative massage, and have my ENTIRE body massaged with oil. It really effective to relax the muscles and get rid of the "waste products". I feel like a "butterfly" for some hours, before the pains take over again.
TNS-Therapy: Transcutaneous nerve stimulation instrument - this has not helped my T-bone pains at all, despite I bought it myself and have had a lot of expenses
Training in a HOT water pool: I try as much as I can to go to the local swim hall, where they have a HOT BATH pool (36 C), where the handicapped people can train their muscles. It helps me a lot to get the sore muscles heating up and used . . . things I cannot do on the ground. I cannot use the whirlpool . . . .its too painful for me :0(
Heat pad: Helps my sore muscles a bit . . . ..but not the T-bones pain.
Daily walks: If my health is reasonable, I try to get a walk every day. It helps for the legs and the blood circulation, and the mental health too.
Psychologist treatment: Because of all my pains and losses in my life (loss of job, friends, some of the family) and because of how the authorities/insurance companies etc. handled my new life and situation , after some years I got a real bad depression, and could not cope with my life at all. I searched at the internet, for different mental treatments, because I had already tried the usual talks with psychiatrists. I found that there is a mental treatment called: Cognitive Behavioural Therapy. I found a psychologist who works with this kind of treatment, where the patient has to be ACTIVE from the beginning of the talks. (Make daily schedules what we do that day, if we have fear attacks (which I had) . . . put it in a form too with a scale from 1-10, homework for every time to meet the therapist, listening to books in tape with POSITIVE stories etc. etc.). This kind of mental treatment I can very much recommend to all, who has a depression too. I have been in therapy now for about 3 1/2 years now . . . . . . ..and it's my last chats with her . . . .the last 6 has been together with my husband, as marital problems often follows for people who live with daily pains.
Music: Helps a lot to lie down and relax to beautiful music - alternative or classical, or just some music I like.
This is my story . . . . . . I do not hope it was too long, but I still think we can all help each other with our experiences in all ways.
I have some questions for you out there in cyber space and T-bone group:
If there are any, who wants to ask ME questions . . . ..please feel free to write me.
Lots of love, Annette from Denmark