Tarlov's cysts

Robin

Dear Jon, I was so happy to find your website. It is such a relief to know I am not alone in this. It is hard for people to understand what we go through.

I am a 51 yr old mother of four. My coccyx started to bother me about 6 years ago. I do not remember injuring myself...it just started hurting. The pain increased, so I started on my journey to find relief. My general doctor made the initial diagnosis of coccyx pain and proceeded to scare me to death, telling me I would need steroid injections, and they were terribly painful. To avoid the shots, I then spent 3 months at physical therapy (useless) and 2 months of acupuncture (useless). I finally decided to get the shots, I was so desperate.

I went to a pain clinic, where they injected me. The shots did not hurt at all. I was so annoyed I had wasted so much time seeking painless alternatives. The steroids worked very well. I was FINALLY painfree!

However, about 9 months later the steroids wore off, and I got more injections. This has now gone on for 6 years. They last 6-9 months, but the pain always returns.

I went to a new doctor in October, and he was shocked that no one had suggested an x-ray or MRI in all this time. So I had an MRI which showed a normal coccyx, but very large Tarlov cysts. I was sent to a neurosurgeon who felt the large cysts were not related to the pain. I was sort of hoping they were. I am not sure this was a very good Dr., so I will get another opinion.

I did find one person with a similar condition on your website, but it was not resolved. So the dr. is treating this as coccydynia, and I received more shots. At this time, I have not received much relief. They say eventually the shots lose effectiveness. What next? This Dr. I am dealing with is just Ok. He wants to send me to an anethesiologist next. He is a D.O.

Thanks for "listening" I hope you have continued improvement from your surgery. Please post any more info you can. So I continue to avoid sitting too much. I hate complaining when so many people suffer from horrible diseases...

Updated 1999-12-24

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