How it’s All Gone Down - My Timeline

The timeline of my symptoms has gotten progressively worse. I have had symptoms that line up with Tarlov Cyst Disease for several years, but nothing that was intolerable. Here’s how it’s all gone down so far.

May 2015         Severe TC Symptoms began to snowball quickly.

Early 5/2015    When I would be on my feet for a while, would have severe leg pain in right leg, stemming from stabbing pain in right hip, hurt bad under buttocks and at first only hurt really bad in the upper part of my back legs. Over a few weeks, it started hurting all the way down my leg.

5/29/15            Driving for 3 hours from SC to TN. Went shopping for 1 hour midway through drive. Barely made it home rest of the drive due to severe pain in right leg. It started with a pinching/stabbing pain in my right hip/butt area and radiated down to my calf muscle. I went straight to my parents’ house because I knew I wouldn’t be able to take care of Jackson, who was with me. After a few days of resting in bed and not lifting him, it went away.

Early 6/2015   A few weeks later - I went shopping and was out for three hours. The pain gradually crept up on me. By the time I got home from that shopping trip, my legs were hurting so bad they were shaking and I almost collapsed. I couldn't carry my bags in from our garage to the kitchen. Severe weakness developed where I would almost collapse and my legs would shake. Leg pain was aggravated by lifting my 3 year old. The pain would creep up on me and be worse/intolerable in afternoons and evenings. Legs began twitching. I thought maybe it might lack of support in my shoes. I bought arch supports and had my feet checked. Nope. Not that. The pain would wax and wane from day to day. Sometimes better, sometimes worse.

Early 6/2015   Was no longer able to take care of Jackson. He started living at my parents except weekends.

6/12/15            Returned to Chiropractor thinking my problems were related to my back.

6/19/15            PCP visit. Normal labs. Began Norco. Two end right toes did not bend anymore. I don’t know when this started but I had been tested several months before and they had been normal. Insurance so kindly denied my MRI for 6 weeks. Meanwhile, back at the ranch, my condition continued to worsen. Thanks insurance!!

Week of 6/22  Tingling got worse and more persistence and my feet would burn and itch. Began to have sensations of lightning pain traveling from my hips to toe. Began having tingling sensations that felt like fireworks going off in my lower legs.

7/13/15            Electromyography and Nerve Conduction Study – Right superficial peroneal sensory response absent. Sensory peripheral neuropathy. At the office, they tested my sensitivity my touching my legs. I realized my right leg was less sensitive and numb. This did not align with my symptoms.

7/20/15            Officially diagnosed with hemiplegic migraines (migraines without pain that have stroke symptoms on my right side.) by headache specialist neurologist.

7/21/15            PCP visit. Symptoms had increased since 6/19/15. Had to start cancelling activities and rest more. Only relief was lying in bed or sometimes better when sitting in fetal position. Sitting, Standing and Walking hurt and my tail bone hurt unless I was reclined in bed with my legs up and took the pressure off of that area. 

8/13/15            PCP visit. Increasing Symptoms. Burning and itching feet.

8/18/15            Lumbar MRI – Revealed “incidental” tarlov cysts in sacral portion of canal. L3-L4 disc degeneration with loss of disc height and signal. Left foraminal disc protrusion producing left foraminal stenosis w/possible impingement of exiting L3 nerve root. Annular bulging without evidence of neural impingement; L4-L5. This did not align with my symptoms.

8/28/15            Doctor referred me to the UT Pain Clinic for epidural steroid injections– told they could not help me because my MRI results were not consistent with my symptoms.

9/8/15              PCP visit. By this time, I couldn’t predict when I would have my pain. Sometimes I would wake up with it. Sometimes I would have it even though I had been resting in bed.

9/11/15            Chiropractor reviewed MRI and felt my Tarlov cysts could be symptomatic. Changed therapy approach. No longer massaged sacral area. Did Decompression machine, ultrasound of sacral area, Ice and TENS on sacrum. Would give me a few hours of relief. This is when I called the TC foundation and educated myself about this disease.

Week of 9/14   Began to have occasional bladder issues.

9/14/15            Visit with Pain Consultants for a second opinion– The P.A. reviewed pictures I printed off from my MRI and believed the cysts could definitely be causing my pain. He told me that in 15 years, he had only seen 4 and mine was the largest. Scheduled Caudal Steroid Epidural for 10/14/15

9/17/15            Visit with Neurosurgeon at UT – ordered pelvic MRI. Did not believe my cysts were causing symptoms. Saw sacral erosion and remodeling but told me if it eroded it wouldn’t be a problem. (This is typical. I was prepared for this response.)

9/18/15            Had a bm. (Yes, I know. TMI) Immediately, buttock and leg pain went from a 3 – 9. I was writhing in bed with pain for an hour. Took a Norco and Zipsor and did not help. Was unable to sleep for several hours.  Severe constant pain for next day and a half and had to stay in bed. (TC’s cause this because pressure is pushing down on inflammation and cysts.)

Week of 9/21  I was out of bed for 30 minutes and put up laundry. I hadn’t felt too bad that day. My lumbar area started to kill me and my legs began to have severe pain.

9/24                 PCP Visit. She also believes my TCs are causing my symptoms because it makes sense (to a logical medical professional). Can’t find another cause. Agreed to coordinate my care with Dr. F in Texas. Supports me 100%!

9/25                 Went to the drive-thru at the pharmacy to pick up medication and a fast food drive-thru. I was in excruciating pain. I had to put my car in PARK when I stopped or was at a red light because I couldn’t stand pushing on the brake pedal. My legs were shaking and weak.

9/30/15            Pelvic MRI at UT medical Center – revealed several Tarlov cysts of at least 1.5 cm. No other abnormalities.

10/8/15            Appointment with Dr. Feigenbaum in Dallas. (More detailed info in another post).

10/14/15          Had Caudal Epidural Steroid Injection. This did nothing to help my pain. Had a bad reaction from it.

10/21/15          First appointment at Pain Clinic for Medication Management.