TheJude.com - Enbrel

My Story

I am a 49 year-old woman who has had back problems for the last 4½ years. I have had 5 back operations only to be left in more pain than ever. Here is a capsule summary of my health history as it relates to my back:

September 1999 - went out on disability because of numbness and tingling in toes, pain radiating down leg and back pain. Diagnosed with herniated L5-S1 disk. Microlaminectomy recommended.

October 1999 - first microlaminectomy by Dr. Hagop DerKrikorian. Recovery went fairly well. The pain was gone.

December 1999 - L5-S1 disk re-herniated. Excruciating pain in back, hip and leg. Toes numb again.

March 2000 - second microlaminectomy by Dr. Hagop DerKrikorian. Left with a spinal fluid leak. Spent next 3 weeks flat on my back while the leak healed. The pain, however, was gone.

July 2000 - pain returned. Started seeing Dr. Curtis Slipman, a physiatrist, who was going to diagnose and treat my pain with injections, if possible. I had 4 injections over the next 4 months. The pain remained.

November 2000 - Dr. Slipman referred me to Dr. Edward Vresilovic, an orthopedic surgeon, recommending a two-level fusion L4-L5 and L5-S1. My L3-L4 disk demonstrated an anterior fissure. If only I had known what this meant! They weren't going to touch L3-L4.

February 2001 - two-level fusion. The pain was gone. Dr. Vresilovic used stainless steel hardware.

August 2001 - the pain returned. I could no longer sit.

July 2002 - the pain was excruciating. Because of the hardware, I could no longer get MRIs of my back. I had to get a myelogram. L3-L4 looked bad. I started falling because of weakness in my left leg.

December 2002 - I had an electromyograph. It showed signal loss down my left leg. Between doctor visits, I was completely bed-ridden from the pain.

March 2003 - back to Dr. Slipman for another round of shots. Nothing worked. A discogram showed L3-L4 to be fissured (still).

May 2003 - three-level fusion L3-L4, L4-L5, L5-S1 by Dr. Paul Marcotte, a neurosurgeon. He removed all the old hardware and replaced it with titanium. He cleaned up the area around L5-S1 and completely removed the L4-L5 disk. He cleaned up the small herniation but thought the L3-L4 disk didn't look too bad so he left it in (sigh). The pain was gone.

July 2003 - the pain returned. My back swelled up and looked like it had a football in it. Dr. Marcotte went in to look around just in case there was an infection. There wasn't. However, after the operation, the pain was gone! All Dr. Marcotte did was go in and irrigate. Here are his surgical notes.

August 2003 - the pain returned. Dr. Marcotte is stumped. He suggests I see a pain management specialist. We started our research on the Internet and discovered that Enbrel can reduce back pain. This took about 2 1/2 hours. It took us 2.5 months to find somebody to give me the shot.

September 2003 - went to the ER in excruciating pain. We convinced the doctor to test my blood for TNF-alpha. Test came back elevated as was my SED rate.

October 2003 - my husband met with our family physician to present the "evidence" for TNF-alpha and Enbrel. After considering it for a few days, the doctor agreed with our findings and I got my first shot on October 16, 2003. I got a pounding headache about an hour later which went away later in the day. Within 18 hours, all the pain was gone. I felt like a million bucks!

November 2003 - the pain started coming back after 18 days. I got my second shot on November 3, 2003. The pain went away within 12 hours but I got another pounding headache and an injection site reaction that lasted 2 days. I was pain-free for 24 days but over time, my muscles started cramping and there was more pain although it was different in nature than when I started. Just in case the pain was due to the same underlying cause, I got a third shot on November 27, 2003. No headache this time, but the injection site is very tender. The shot did help with the pain.

December 2003 - I took another shot on December 30, 2003 because of some discomfort. The Enbrel cleared up some pain but not very much. Much of the pain is due to using long dormant muscles and stretching scar tissue. In fact, I certainly could have lived without the last shot but since I still had a vial left, I figured why not? Other than feeling a little nausea and some injection site reaction at the first site, not the current site, the side effects were minimal.

February 2004 - I have some residual pain from all the activity, swimming, etc. so on 2/9/2004, I tried one last shot of Enbrel, my fifth. It did nothing. This is actually good news! It means that my fissured disk is no longer leaking. It means that the only pain I have left is associated with exercise, scar tissue, etc.

I am currently free from the burning, incapacitating pain that kept me in bed for 10 months. However, I have some pretty severe aching pain. Because I have scar tissue, I have a pinched nerve that causes pain everyday but I try and push through it. I have muscles spasms from being up and around again and exercising as well as Physical Therapy. I try and force myself to go several times a week which is very challenging and satisfying at the same time. The sources of my pain are complex and even though it may not seem like much, being able to eliminate even one of them makes all the differences between being bed-ridden and up and around. (NEXT->)