Eileen - Ohio, US

I had 15 years of undiagnosed adenomyosis by several different gynecologists. Their solution was to put me on the birth control pill to cover up my symptoms or to come in for an ultrasound every time I had pain.  Neither solution worked for me. I had to figure out on my own what was going on with me and what specialist to see. I finally was cured from adenomyosis and started experiencing concerning symptoms a year postop from adenomyosis surgery.  My surgeon had left the area, so I needed to find a new one. The one I found ordered a pelvic MRI for me and that is when the tarlov cyst was noted. And that is when the pieces of the puzzle slowly started coming together. 

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Rewinding about 20 years, following a c-section and spinal epidural, I experienced a strange buzzing in my legs, mostly my left. I know now that that was my first symptom of tarlov cysts. The symptoms I experienced in the years leading up to being officially diagnosed with tarlov cyst disease:  Sciatic pain and pelvic bone pain whenever I bent. I had leg and foot and rearend numbness, leg and foot tingling, bugs crawling on my legs sensation, water dripping on my legs sensations, tailbone pain, leg weakness, unsteadiness, bowel and urinary dysfunction, just to name a few.  The lightbulb went off as to what could possibly be causing these symptoms when the radiologist noted that incidental finding of a perineural cyst on that pelvic MRI that was looking for endometriosis. 

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Because of the fact that I had spent decades figuring out on my own that I had adenomyosis, I knew it was up to me to find out all I could about tarlov cysts. What I found was overwhelming at first. Only a handful of surgeons treat us? Most doctors believe they are asymptomatic? Insurance hurdles, money to pay for travel and for surgery and the surgery itself were all daunting.

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I found a Facebook group that helped me so much. One of the administrators suggested that I get a consult with one of the specialists. At the time, two specialists were offering phone consults. A Dr. Frank Feigenbaum in Dallas, TX and a Dr. Rudolph Schrot in Sacramento, CA. I researched both and decided that Dr. Feigenbaum would be the one I reached out to. 

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What an incredible doctor! I had my phone consult with him and subsequently had surgery with him, after many, many insurance hurdles, along with a miracle, that allowed that to happen. 

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Dr. Feigenbaum treated two sacral tarlov cysts that were compressing five sacral nerve roots.  He also fixed my sacral bone that was eroded due to the cysts. Prior to surgery, I was on the couch all day. Anything else caused me pain. Prior to surgery, I went from constipation to diarrhea, experiencing diarrhea at least twice a week. In the three years since surgery,  I have not had diarrhea once and my bowel movements are normal (which I had forgotten what that actually was.) I woke up from surgery not feeling the need to urinate and I actually asked the postop nurse (in gest) if Dr. Feigenbaum had removed my bladder. 

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I am almost three years postop. I walk several miles every day and can do just about anything I want. I am forever grateful to God for healing and for Dr. Feigenbaum who takes this disease head-on. I often think of his job-of handling tiny nerve fibers and doing all he can to heal us. I am forever grateful for being able to be off the couch and for each day that I have been given. 

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That's why i'm joining the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.