Arachnoiditis and coccyx

Nilton -

Original posting, 2005-07-10:

Dear sufferers or ex-sufferers, it was during a research for help through the internet I found this blessed site. It is good to know that people are ready to share their experiences, even the painful ones with others in a way to comfort or show that there are ways out of a problem. I live in Rio de Janeiro, Brasil and I have been with this illness for almost three years. Like others of you guys, I went through many doctors and specialists, tried all sort of treatments, without a complete success.

My job requires desk activities, and not being able to be seated is really a killing issue. After two years, the only thing that helped somehow is a Nerve Blocking procedure based on pulsed Radio Frequency. I have done it twice up to now. It was done by a neurosurgeon, Dr. Eduardo Barreto and consists on burning the nerve so it may not conduct the pain signals to our brain.

However, I still fell pain over the hip region, sacrum, buttocks and sciatic on upper back part of both legs. I am surviving based on physiotherapy, stretching, and finally the old pain killers.

One of the orthopedic doctors found out from a magnetic resonance exam that my coccyx is extremely long. It almost touches the rectum. He thinks this is the cause of the pain. It agrees with some of your letters that discuss the coccyx mobility as the cause of coccydynia. If that is the case the only chance would be the removal of the excess which I confess I am in panic just thinking on it. This same doctor told me to never try it. I noticed some of the people that went to this surgery are happy, but not the majority. I believe this surgery also requires a very experienced surgeon, I do not know of any with this skills in my country.

Update, 2005-08-28:

I have mentioned in my first message that I have done a pulsed RF nerve blocking with good results. However, I would like to warn our friends that it may have caused a very serious problem at L4 and L5 of my spine.

After 6 weeks of suffering terrible low back / sciatica pain that I supposed got from hard or inappropriate stretching, I did a MRI that showed a possibility of a problem called Arachnoiditis. It is not confirmed yet. I am sure praying the diagnostic is wrong and I will keep you posted. Anyway, This is a warning to people about to go through this very "safe" procedure. My doctor never advised me of any risk besides the blocking failure.

Best regards, Nilton

Update, 2005-10-02:

Two doctors confirmed from a MRI done on August, 15, that I got the so called arachnoiditis. I will not go into details, but it is usually caused by spine interventions like the ones we coccyx pain sufferers do to cure our problem.

When we are in pain and somebody says there is a possible solution we are anxious to try. Besides the conservative treatments one doctor advised me in July 2003 to have three epidural injections. I stopped at the first one since it caused pain in different places (my right leg, lumbar). I also have told you about the two RF pulsed nerve block procedures (2004 and March 2005) I went through with good results.

The comment is: They never told me that those procedures can lead to a much more serious condition like arachnoiditis (AR). I thank you so much for your site since people can read about lots of personal experiences before trying one specific treatment. I wonder if one of our fellow sufferers mentioned this disease in their e-mails. I do not remember seeing one.

The fact is that the pain related to the coccyx is bad enough for us. We do not need other kinds of pain and suffering, mainly the ones without a cure like arachnoiditis (AR). The AR is so evil that there is no happy ending histories in its Internet sites. I have been trying to contact support groups for two weeks without success. The sites are to busy to answer and the messages fails.

There are no words to express my appreciation for you Jon. You do such a remarkable job managing and maintaining this valuable site. I am sure the arachnoiditis sufferers would be so better if they had a person like you on their side. GOD BLESS YOU VERY MUCH!!

Meanwhile, please let our fellows hear about my "rare" case for it happens. Think TEN times before letting anyone touch your spine with needles.

Best regards,


Update, 2007-12-23:

It has been a long time (2005) since I wrote you some sad words about an experience with a RF nerve blocking procedure that could be the cause of the Arachnoiditis found in my lumbar vertebras L4 and L5 at that time. It is amazing how a person can become desperate when an incurable condition appears in her body. There I was with no hope and no help. My doctors gave up on me and probably afraid of a possible law suit, using good manners, discharged me as an unwanted animal.

The only thing I did besides feeling pain was to continue to use the same medicine and to keep myself busy "Keep walking". I prayed God to abbreviate that situation for I found out I was not able to end it by myself. Everybody including friends and family supported me all the time and times went on inexorable. That's when I received a friend's visit that started to talk like many others before how marvelous is God's creation which is capable to recover against all odds and to surprise the doctors. A person can believe in the same effect if she is not a religious guy but considers the evolution of mankind since they started its long journey to become homo sapiens. I had seen "miracles" happening before and Jon, I will tell you, I really needed a miracle.

The happy end of the story is I felt myself more comfortable after that blessed visit, kept walking and living, the pain became more and more bearable, a very, very slow process, almost unperceptive, but continuous and pleasant. After years I was capable to do what everybody does without perceiving how wonderful is to be able just to sit, stand up, walk and lay down without pain. I am sure you felt the same way and so many who got rid of back related pain. Well, the Arach. is still there, I've changed job, crossed the Atlantic to Europe carrying my old memory foam cushion, taking small doses of medicine, and, of course, taking good care of my precious coccyx.

My final words are to our friends who visit your valuable site. Have faith in your doctors and prescribed things, have faith in you, and above those, have faith in God if you are a believer, but even if you are like I was with no help and no hope, believe in Love. The love you receive from others will surely help you to rejoice again and to find like said in an old Dylan's song "Shelter from the Storm".

Thank you very much for this opportunity to tell you about my present good condition. Kind Regards,


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