My Arachnoiditis History by Karen H.

In 1991 I began experiencing low back pain radiating into my right leg. I underwent an MRI with contrast and eventually a Myelogram (do not know what dye was used). In November 1991 I had my first spinal surgery. A laminetomy and microdiscectomy was performed at L5-S1. At the end of this surgery the site was irrigated with Bacitracin and Durimorph was left in the epidural space. I experienced no problems recovering and was asymptomatic until 1995 at which time I began experiencing neck pains, numbness in my left arm and hand and tingling throughout my shoulder and down my left arm through the left hand.

I had another MRI with contrast and another Myelogram (do not know what dye was used). In July of 1996 I underwent my first cervical surgery fusing C4-C5 using doner bone. In February of 1998 I was once again in surgery for a fusion at C5-C6 with doner bone, screws and plate instrumentation. Neither of these surgical reports mention anything about the spinal cord or the use of any drug other than Bacitracin. It now became time for my right leg to bother me again and then moving up into the lumbar area. I was sent to Pain Management for a series of epidural steroid injections. I had 5 injections using Depo Medrol before I said no more. By that time I had heard about arachnoiditis, but, of course, it could never happen to me.

December 1998 saw me once again in the sugical room. This time I underwent a fusion of L5-S1 using Ray threaded cages. The operative report from this surgery is the first time I saw "Failed Back Syndrome, L5-S1" or "Lateral Recess Stenosis". It is also noted that the dura was "exceedingly adherent to scar tissue". During this surgery there was a "rent in the dura, which was closed in a watertight fashion with dural graft and #4-0 silk surture materials." This surgery did nothing for the pain I had been experiencing. My right leg was especially bad with some left leg involvement. An MRI was performed 1 month after the December surgery and revealed a cyst 10X5X4 which was aspirated. My doctor and the Radiologist concurred that there was no reason to send it for testing although there was some curious matter in the fluid.

My symptoms continued to escalate. After another myelogram (again, do not know what dye was used) revealed that one of the Ray cages had slipped sideways and split open from top to bottom, we decided on another surgery.

In March of 1999, this year, I had revision surgery using bolts and screws to attempt to hold the fusion in place. The slipped cage could not be removed because it had already fused to S1. The second cage was also left in place. I do not have the operative report from this surgery and do not know any details. Following the surgery my husband was told by my doctor that my vertebra were very brittle and to have me double my calcium intake and eat lots of cheese. He did not recommend a bone scan. On 7/2/99 I had another MRI with contrast using ProHance. This stated that there was "extensive scarring at L3, L4 and L5". I also have another "9X2X3 cyst with extensive contrast enhancement". There is extensive thecal sac enhancement "noted at L4-L5 and caudally to the S1 level". There is a "clumping of nerve roots and distortion, principally at the L5-S1 level with linear density proceeding anteriorly from the nerve roots which may represent adhesion". I have "extensive perithecal scarring, especially noted at L5-S1 and less so at L4-L5". The final notation states that I have, "Distortion of nerve roots, particularly at L5-S1 suggesting arachnoiditis".

My low back, buttock, left and right legs and feet continue to be very painful, 8 on the 1-10 scale at times. I am currently taking Neurontin 900mg daily, Vicodin 1-2 tablets every 6 hours and Flexyril. I am also Manic Depressive and take Lithium, Effexor and Trazadone for that; although my psychiatrist increased my Effexor by 75mg daily when I told him about my diagnosis. If I could switch back from Lithium to Depakote then that would take care of the anti-convulscent but he wants the Pain Management doctor to make that decision.

I suppose I'm doing fairly well. I can still perform most of the household chores except sweeping, moping and vaccumming. I can still get out to run errands and go to dinner. I hurt all the time and my body really lets me know when it wants another Vicoden. I'm allergic to codiene so I don't know what they'll put me on when the Vicoden doesn't work. Anyway, I'm ever so thankful for the search engines on the Internet and to have found ASAMS.

Karen Hostetler