The beginning of my journey with Tarlov Cysts

Two days after I had my baby in August 2014, the pain started. It was a dull but intense pain in my left hip area it felt like my leg was getting cut off with some dull object like there was pressure and a lot of dull pain, it was weird. The nurses that were taking care of me in the post partum wing just said it was all in my head and called a psychologist in to evaluate me. The psychologist said I was fine and that the pain had to be something physical.


After getting out of that hell hole a bunch of social workers and home care nurses came to check on me to “make sure I was OK” because that “caring” nurse that said my pain was in my head put in the notes that I had some problems that should be checked on. 5 total came to check on me. I told them all the same story, that I have been in pain since my baby was born and the post partum nurse tried to tell me it was in my head and wrote those notes on my file. They all left me alone after that. The home nurse suggested I bring this up at the 6 week check up and it could possibly be sciatica.


At the post partum check up I brought it up and my OB doctor referred me to physical therapy. I went to physical therapy, it turned out my hips were out of alignment it took 2 months of physical therapy twice a week to get them to stay aligned. I stayed out of work for another month in physical therapy to make sure I was ok to go back to work.


Then I went back to work. My doctor said to take 600mg of ibprofin, tylenol, or aleve every 4 hours as needed for pain. I also had a few hydrocodone for severe pain. At work I went back to running at full speed like I did before being pregnant. That went well for a few weeks, then I needed to take some ibprofin. After a while I was sure this supervisor aide was trying to kill me. She expected me to run twice as far as everyone else and do twice as much work as anyone else because she said so. I tried to do it for one day, while I saw her go out and take an extra fucking cigarette break! After that day I refused to do that much work again. I was in so much pain.


I tried to only take it if i was in a lot of pain. By Christmas my stomach was shot. I got really sick, didn’t get a high fever it stayed at 99.7 but I threw up so much I started throwing up blood. I had just gotten a written verbal warning for being sick the week before and missing work. I told my boss to write me up because I’m throwing up blood and going to the doctor. I stupidly went to urgent care, now I know if you’re throwing up blood go straight to the er. While waiting for the urgent care dr i threw up another 3x and I saved the last bag because of a shift change when i said i was throwing up blood the nurse looked like she didn’t believe me so I showed her the blood filled puke bag and handed it to her to examine herself. Lol she looked horrified and the doctor was in soon after that.


The dr gave me zofran and said to get a ride to the er because the drug makes you drowsy. In the er they gave me this gi cocktail that was white, chalky, and made my mouth and guts numb. After that pain and the vomiting was gone my right hip pain came on and hit me like a ton of bricks i started crying the dr came in and explained its maralga parasthetica it’s common after childbirth, gave me hydrocodone, said take this and ibprofin for pain, then sent me home. My doctor referred me to an orthopedic dr for the hip pain he did an mri and xray on the hip nothing showed up so he did an mri on my back and that’s where they showed. Benign cysts the largest 1.8cm at s2. Other than that the mri was unremarkable the dr said the cysts had nothing to do with the pain but since the cysts were there he couldn’t give me a cortisone shot in the back.


He gave me one in my right hip for that pain and it’s made the pain worse! Instead of stopping at the knee like it did before the pain shoots to my foot. I also ended up going to the er because i layed down one day and pain started shooting in my chest right under my left breast to the middle of my chest and middle of my back. It hurt to breathe! It went on for over 48hrs. I had to stop and catch my breath at work every few minutes because taking a deep breath hurt so bad. The er did an ekg that turned up normal, chest xray, ultrasound of liver, kidney, and gallbladder turned up fine. I had severe stomach pain when they gave me asprin it felt like a knife just stabbing my stomach. My blood pressure was normal until i stood up it was higher while standing for some reason. The er doctor said nothing life threatening is wrong so go home take ibprofin, tylenol, asprin or aleve for pain 600mg every 4hrs. Then I thought what if the pain meds wrecked my stomach? The wait to see a gastroenterologist is 3 months around here. I talked to my sister who’s living the life. She takes care of mansions in Bali, Indonesia and Maui, Hawaii. She’s into the all natural way of treating everything. I believe it’s a balance between natural treatment and medical treatment. Anyways she said ashitaba leaves are good for your health and couscous is good on the stomach. So I went to the health food store and ended up talking to this naturopath that works there. She said to go gluten free, get probiotics, and take ginger. I don’t have celiac disease so a gluten free diet is useless for me. Ginger root helped with the nausea and I can’t find ashitaba leaves. Amazon has tea but I haven’t tried it yet. The couscous is awesome.


I quit taking pain meds and started using an ice pack to ice down my back every 2hrs at work and added hemp seeds to my diet. I put 1-2tablespoons in with oatmeal for breakfast, trailmix for a snack, or on a salad. After doing that for a few weeks my stomach pain went away. I went to see a neurologist after having a chat with my parents and finding out that theres a lot of spine problems in the family. The dr looked at my mri and did the knock on the knee poke the feet check then said it looks like tarlov cysts but they don’t usually cause symptoms so he wants to see if anything else could cause my pain. He put me on gabapentin for the pain. I quit breastfeeding despite what the doctor, pediatrician, and pharmacist said because from what I saw in the drug information it said there’s a risk of developmental problems. I don’t want to risk that at all!


Then I went in for a needle EMG. That was so irritating and painful! I hobbled into the doctors office at a pain level of 5-7 and left with a pain level of 8-9 out of 10.

A few weeks later I went back to the neurologist to review the results of the test. The neurologist said there’s no nerve damage or muscle problems in my legs. In a year I will have another MRI to check on the cysts. Until then just take the gabapentin, physical therapy and let the doctor know right away if anything gets worse.