Patients' Stories

Dot's Story

I was diagnosed with arachnoiditis in 1994, after I began having constant lower back pain that wouldn't stop. No matter what I did or what position I got in.

As most of you, I have no idea what caused the arachnoiditis. In 1964, I had a myelogram (dye used unknown). This gave me a headache like I had never had before or since. It was in a band from my eyes, over my head, and to the neck. I vomited for three weeks along with the headache. The doctors ordered Compazine for the vomiting. After three weeks of Compazine, my body wouldn't take any more, and I had seizures. After all of that, I had a spinal fusion at L4-S1. Recuperating from that was a nightmare.

After I did heal, my back didn't give me too many problems, until the constant pain in 1994. I fought having an MRI because of what I had gone through after the myelogram. I finally consented. The results are on the bottom of page.

I was referred to a pain management clinic by the orthopedic doctor that ordered the MRI. All he said was "I can't help you." From then on I have been medicated and wear a SCS, which helps the localized pain in my back. I have had three separate series of epidural steroid injections. I was not aware, at the time, that they can cause arachnoiditis. None of these ever gave me any relief.

In 1997, I suddenly had terrible agonizing pain in my feet. It felt like someone had put my feet on fire! I had neuropathy. I was in such pain, I couldn't eat, and could barely get out of bed to bathe, etc. The doctor put me on Neurontin, but after several falls, I stopped taking it. The pain finally got to the point that I couldn't live with it. I went back on Neurontin. I take 1500 mgs. per day. While my body tried to adjust, I fell many more times. I hung in there and have some relief now. It never goes away completely, but I have to live with that. If I have to go out, I'm worn out before I get to the car. I get terribly depressed for that, plus I have had to live alone, since my husband passed away in 1997.

1994- CT myelogram:
Posterior decompression at L5-S1 with a small pseudo meningocele on surgical defect. Arachnoiditis with clumping of the nerve roots at the level of L-5. Right L4-5 ligament hypertrophy resulting in a right lateral extradural impression on the dural sac. Bulging of the L3-4 annulus and to the left foramen closely approaching the left exiting L3 nerve root.

1994-Lumbar myelogram  (14cc of Isovue 200 was used) see note at bottom.
Problem: The lumbar subarachnoid space is quite capacious. An outpouching of contrast material is noted posteriorly on the right at the L5-S1 level which has the appearance of a post-surgical pseudomeningocele. There is no evidence of canal stenosis. Small ventral extradural impressions are noted in the dural sac at L2-3 and L3-4.  Little if any disc material is seen between the L5 and S1 vertebral bodies. There is an extradural impression on the right posterior lateral dural sac at L4-5 which may be due to facet arthropathy or ligamentum flavum laxity.

1998 Cervical MRI with no contrast:
Impression: Diffuse mild posterior bulging of the C5-6 and C6-7 intervertebral discs without evidence of local herniation of disc material. Neural foraminal stenosis due to hypertrophic change of joints is seen bilaterally at C4-5 and C6-7.