I also have Tarlov cysts. One day I just started falling. Then as it was getting worse, I was in our pool and while swimming got a really bad ground pain. It kept getting worse. I was treated like a guinea pig for over a year. My 1st appt I asked for an MRI but instead was given a set of SI injections and given muscle relaxers. Finally Dr ordered MRI which revealed multiple Tarlov Cysts. I kept called Dr to get MRI results & he never called me back! I went and picked up my MRI disc & report. I was shocked to read results. Again I
I had to start all over with new Drs. I was given multiple injections, which didn't help at all. In fact the last 2 caused increased pain. I did a trial for a spinal cord stimulator & had good results with a few bumps in the road. I had a permanent one implanted but I fell and broke the leads. Then I had a paddle stimulator implanted & it did not work at all. I had it removed & just had pain treated with medication. I since .moved to Florida & I'm starting all over again. I did have another MRI just done. My new Dr didn't listen to me & ordered a lumbar MRI, but my large Tarlov cyst was at S2. This new MRI stops at L5. There's more bad news, because one of the smaller ones is now 1.9 in size and my symptoms are getting worse. My left foot now gets numb & the groin pain in through the roof. Sitting, walking, standing, bending all hurt so much. This feels like sciatica pain in steroids 24/7. My new Dr cut my pain meds in half but added something new. It was horrible. I woke up with sores on my mouth from the pain patch. Even my tongue hurt. My pain Dr, he's a PA, is almost insisting I get another stimulator. I don't want it. I've done it 3 times if you count the trial. My back looks like a road map & the battery pack was in my upper butt. That incision was opened and closed 3 times. The scar even hurts. One scar on my back is so deep and dark purple, I feel so ugly. I'm going to try and be seen at the Mayo Clinic. I will feel like I'm being treated by the best. I'm wondering what your symptoms are. My bladder feels like it's shot, my bowel habits have changed. I have contact pain in lower left back, groin, legs and now numbness in that foot. How about you?