My name is Deborah and I am going to share my story of Cauda Equina Syndrome and Arachnoditis.

In January 98 I slipped on black ice in a parking lot at work...I did not fall, however I severely wrenched my back several times struggling to regain my balance and composure. My back hurt that day, and was worse the next day....I took Advil for the pain and continued working...my boss told me 3 times that day to file a W/C Claim...something I would not have done myself, as I felt that this was not a serious injury. Nonetheless, I filed the claim to make her happy. Thank God for that as it turned out.

On the third day I woke up to incredible pain...in my back, my legs and the front of my thighs.....I took a couple of days and the weekend to rest in bed and the back pain eased somewhat...of course when you take 2400 mg of Advil...about anything will feel better, right? And I returned to work Monday, and I thought my back was not getting better because I was not resting it.

Then I noticed one morning in the shower, about a week later, that my last three toes were numb on my right foot. I chalked it up to something that would pass. Also during this time, I began to have problems with incontinence, I began wearing pads everyday because my bladder would leak with the slightest stress. Still, I did not connect all these things to anything serious, and certainly not related to my back.

To make a long story short, I waited until May 6th to go to my family doctor (even though I had called him for prescription muscles relaxants and Motrin 800 mg about 6 weeks earlier for back pain).

By the time I finally went to my doctor on May 6th, the right leg felt "dead" and I felt like a "stick person" in my both legs which I now know was sciatica. The symptoms had come on gradually, rst the toes, then the foot, then the calf, then the thigh, then the bladder. Looking back I realize that I should have taken it seriously. My doctor had a medical student there that day, and so she did the exam and began with checking my reflexes.

I had no reflex in my right knee or ankle. Both knee and ankle were diminish on the left leg. She took a tuning fork and hit it against the table and placed it against each foot. I could feel it somewhat on the left foot. I felt nothing on the right foot. Still I did not think this was serious. The rest of the exam was a blur but she calmly went and got my doctor and he came in.

He tried to get a reflex, nothing. He pressed on my back and said "Does it hurt here?" "Yes," I said. He said "Are you having problems with your bladder?" "Yes," I answered sheepishly (how did he know that..ha...he's a Dr!!) Not only was I having problems with incontinence, one time when I was getting into the passage side of the car to go to lunch with a coworker, my right leg gave out totally and I lost control of my bladder.

I still was not panicking at this point, but my doctor said "I want to consult with a colleague of mine while I have you in the office" "It sometimes takes a month to get in to see him." He left the room to make the call. Then he came back in and said "I want you to go to the hospital right now for an emergency CT Scan, and do not leave the hospital until the neurosurgeon has seen you."

I said to him, "Should I be concerned? " He said "Yes". I said, "On a scale of 1-10...10 being worst....how concerned should I be?" He said "At least an 8." "I want you to go right now for the CT Scan." Now I was getting concerned.

In a daze I walked over to the hospital and was admitted for test (not to stay) and had to call my husband and leave a message. At that point I almost began crying. I had the CT Scan and some x-rays and met with the neurosurgeon. He said because he wanted me to go for an MRI within a week, that they could not get as clear a reading from the CT Scan and X-Rays because of my weight (I had gained 40 pounds from inactivity). He said to call his office the next day and his girls would schedule it and to tell them he wanted me in his office within 24 hours of the MRI. Which I did.

I went for the MRI the following Wednesday and back to him Friday. He said to me, "You have a severely herniated lumbar disc." " It is pressing on the thecal sac. You will not get full return of your right leg and epidurals will not help you, nor will physical therapy at this point." "If you don't have surgery you will end up with slap foot and have to wear a brace on your leg the rest of your life." He further stated that he did not know if he could reverse the damage already done, and that it was my decision as to surgery.

He also said that the surgery would be performed only to stop further damage, not reverse the damage already done, he went on to tell me the risks of surgery. He wanted me to go for a myelogram so he could see how serious the disc was cutting off the L 5 nerve root. He showed me the x-rays and had his nurse schedule a myelogram. I left his office with the CT Scan films and the MRI films to take with me for the myelogram. I canceled the myelogram because I was terrified of anyone sticking a needle in my spine.

I called his office and said I want to try the nerve block (epidural first)...which I did. He was right! It did not help and was a horrible experience. After eight stabs to my back the doctor gave up and just injected the liquid.

Finally after six weeks I agreed to the myelogram. The doctor said he would make sure I would have drugs to help me through it. At the myelogram I was placed on my stomach on the table, given IV drugs and I did not feel the actual puncture. Then x-rays were taken and I was sent to have a CT Scan. The Scan should have taken about 40 mintues. After about 15 minutes they pulled me out of the CT Scan. The dye could not get past the herniation!

You are supposed to remain flat for 24-48 hours after a myelogram but the technicians said to me "We need you to sit up for 5 minutes and turn completely over twice". At that point I knew I had no choice but surgery.

I remained in the hospital for 6 hours following the myelogram. My neurosurgeon wanted me back in his office at 2:30 the next day. He sent his nurse to get the test results. When he walked in the room he said to me" You have almost complete blockage" You don't have to have surgery, but it is serious malpractice for me to not strongly recommend it!" I said OK, let's schedule the surgery. I had a microdiscectomy, laminectomy and spinal decompression in June of 98. The surgery was a success in that it stopped the progression.

But I have been unable to work, and have been deemed Permanently Totally Disabled my neurosurgeon. I applied for Social Security Disability and was accepted the first time. This was after their own medical exam and reviewing all my records. We have an attorney as the Workers Comp Ins Co. is fighting paying out total disability.

I take pain medication to get through every day. I take Neurontin for nerve pain, Flexeril for muscle spasms, Prozac for depression, and sleep medication so I can sleep, which is only 3-4 hours before I wake up in pain. I have right foot drop, wear an AFO Brace and use a cane. The bladder problems improved a bit, but the right leg from the calf down to my foot remains "dead."

I had a new MRI in June 99 which shows I have Epidural Fibrosis/granulation on the (L5) Nerve Roots and in the space where the L5 disc was. Also, I have residual Cauda Equina Sydrome and Chronic Radiculopathy. I am 43 female, happily married and our son is married and in the military. My husband has been an incredible support. My neurologost said I will never be able to sit more than 20 mintues at a time, I will have to take pain meds, arthitis medication and muscle relaxants for the rest of my life.

He rated my injury in the top 10% of severity he had ever treated and the surgery he performed is the most common. But still, even though I can't work, I feel so blessed in my life. It could be so much worse. I have crafts that I do, cross stitching etc.

Much thanks to Vickie Wolfe who invited me into her Cauda Equina Group in December, 1999 and helped me find a good Pain Management doctor so I could get the terrible pain under control. Without her I would have continued to feel alone with both CES and "A". It helps me so much to know that I am not alone in experiencing this frustrating syndrome. Thank you for reading my story

Deborah