I have spent lots of time reading everyone's stories about their experiences with these nasty cysts and decided I wanted to share my story. Not because mine is worse or much different, but just so I can vent to people who can relate to what I'm talking about.
I'm a 33 year old female with a "bad back" in general. When I was 13 I was diagnosed with scoliosis which was minor at the time. Since that time it has progressed into a double major curve, both curves measuring around 52 degrees. As a result, I have several bulging discs, a herniated disc, and degenerative disc disease in the lower three lumbar discs.
My problems began about 6 years ago, when after years of good health and no pain I started having "flares" of debilitating back pain and bladder issues. I had always been prone to getting UTI's but was suffering from a UTI that wouldn't go away. After much time with a urologist we found I had an infection in the lining of my bladder itself and that my bladder did not empty all the way. I also had issues with spasms and frequency. I was treated with Bactrim for 2 1/2 years and while the infections have come and gone since then, they are not as constant as they were in 2007. Not long after that I began suffering from horrible bouts of constipation despite a fiber filled diet and adequate water intake. My doctors chalked it up to IBS and wanted to put me on medication for that, but my symptoms didn't really add up to IBS in my opinion so I refused medication. The constipation issues continue to this day.
As for the flares of my back, I would go through times when I could barely walk for 6-8 weeks, couldn't stand, sit, walk...anything without discomfort. In 2008 I had my first MRI which the docs told me showed nothing besides my scoliosis and assured me my scoliosis did not cause any of this.
Now fast forward to last year, March of 2011. I had another flare, this time with weakness and pain in my right leg and tingling in my groin. Another MRI showed the damage to my discs, but the docs insisted my pain should be to my left and not the right side. I was referred to a doctor for my scoliosis who looked me over and said there was nothing he could do for me. I went to a neurologist who said he could repair my herniated disc but if I was only experiencing intermittent pain on my left side he'd just as soon leave it alone. He had no explanation for the pain in my right leg. I then was referred to another scoliosis specialist who pretty much repeated what the others said, only adding that he thought my pain was "in my head" and that a good round of PT would help me.
By this point in time I was seriously considering that death was preferable to either "going crazy" or living with pain like this. I started to question my own sanity! One afternoon when my mom was over, she thought maybe we should check out my MRI. She's got her BS in nursing and lives with chronic pain herself, and she was curious as to what the exact findings were. Right off the bat, we look to a side image and right there on my tailbone was this large, bright white glowing "thing" that looked horribly out of place. My mom said right away after looking over several views that it was a cyst, but saw that in my report there was no mention of it. We then requested my MRI from 2008, which showed the cyst, only it was mentioned in that report that there was an incidental finding of a "large meningeal cyst" located on S2 and S3. I took the disks to my chiropractor (my lifesaver) who reviewed them and said he thought the cyst could be the cause of my pain.
I was shocked that the cyst had been ignored, so I drove a two hour round trip to see the radiologist who had read both MRI's. He told me the cyst measured appx. 1.75 inches long, 1.25 inches wide, and 1 inch deep. But he insisted these cysts cause no symptoms and it was definitely NOT to blame for my pain. We talked about my pain and he insisted all my pain should be on the left side, where the bulging and herniated discs are, and that perhaps I should see a therapist to help me with my pain issues in my right leg. I wanted to punch him!
After that, my mom and I began researching these cysts and you all probably know where it went from there. Now I see there are many of you suffering like I am. I quit my job at the DMV last July because the pain of sitting at a desk became unbearable. I cannot work out like I used to without "paying for it" afterwards. Even if I can push past the initial pain, I trigger worse pain that will last for up to a week. I feel like my butt is on fire anytime I sit or stand. My groin still constantly tingles and has for over a year. I have burning and shooting pains down the back of my right leg and weakness in my knee and ankle. I also have burning and electricity like sensations in my foot. Add that to a burning bladder, constipation, and it makes for one very old feeling 33 year old.
Does this sound familiar? Please tell me I'm not crazy like the doctors make me feel! Dr. F in Overland Park has agreed to see me once his new office is set up in April. (I'm only 5 hours from him) I'm terrified he'll tell me the cyst is nothing to worry about and I'll be back to square one.