Patients' Stories

My Story
Linda Wade

Since you are reading this I want to thank you for taking the time to learn about this disease. I wish that someone had told me about it before each and every procedure that was done to me that caused it.

ASAMS has been instrumental in providing support, education, and truthfulness in all aspects of Adhesive Arachnoiditis. Upon reading the information for the first time these 4 words have had a tremendous impact on my life. They are PAINFUL, INCURABLE, PROGRESSIVE, and NEUROTOXIN.

Here's my story:

I am a 41 year old woman who was given Arachnoiditis 3 different times by 3 different professionals. First  was September 1997. My husband and I were remodeling a 3 story building for resale. It was our second project after beginning our own business. While painting trim boards, scooting on the floor, my back began to ache. I had a pinched nerve like so many times before.

On September 13th I went to a new chiropractor. He concluded my nerve was pinched very badly. He began to do manipulations. At our 2nd appointment he did a procedure that was too forceful for me and ruptured my L-5, S-1 disc. He continued in the following days to perform manipulations despite my agony and protests. When I finally got away from him, I went to another chiropractor that I had known longer. He ordered a CT scan, and sure enough, I had a herniated disc. He put me in touch with a neuro-surgeon. This doctor could not see me for a total of 62 days. It was horrible.

My leg felt like molten lava dripping down it, my spine felt like it had a hot poker twisting in it, and my foot felt like it had a hot spike up through it. While waiting to meet him, I even passed a kidney stone in bed. Also very painful.

Upon meeting the neuro-surgeon he noticed that I had no feeling in my last three toes and said I needed surgery right away. On November 10th, 1997 1 had a lumbar laminectomy. Was released in 2 days. Told to go back to work in 3 months.

We began our 3rd remodeling project, the house we live in to this day. We had to give up our other house. After one week, the same disc ruptured again. On April 20th, 1998 surgery #2 was scheduled. Same neuro‑surgeon. This turned out to be a nightmare. I awoke to find 1 had to be kept flat on the bed for 3 days. I had an incredible headache, vomiting, fever, and could not see. 1 was told I had leaked an ounce of spinal fluid when my dura got cut and needed to lay still. On the 3rd day nothing was improving, a nutrionist did some blood work and noticed my potassium level was a 1.7, legally dead, and helped me.

On the 4th day they raised the bed up slowly and I thought everything would be ok. I was never told about Arachnoiditis. I left after 7 days. The pain never leaves.

Two months later a series of 3 epidural steroid injections are ordered. The first one feels like liquid lead sinking down through my buttocks and legs, she says it's working. Felt no relief what-so-ever. I go back for the second one. I am bent over as far as I can to give her maximum space when all of a sudden I get a terrible headache. I said "I must be concentrating too hard, I have an awful headache" - she says "No, I nicked you, so go home and drink a lot of water and consume some caffeine and lay down". 1 couldn't lay down at all, I had to pace the headache was so bad. Arachnoiditis insult #2. I had no idea at the time that the injection contained Depo-Medrol. A solution that is carried in a base of Polyethylene Glycol, the same thing in embalming fluid and Antifreeze!!!! I didn't find out till she told me last November!!!!

 I find it ironic that a pain specialist can give you everlasting, insidious pain and not do a thing to bring you relief or comfort. An entire year goes by, I'm suffering so badly I seek the help of an orthopedic surgeon. Before he will do anything he sends me for a disco-gram. I undergo that procedure. She can't get the dye into the correct space. Keeps saying "oops I hit a bone". My disco-gram is deemed a failure. The orthopedic turns me away and says "I can't help you, go see a sports medicine doctor." I refuse. I go back to the neuro. He schedules an MRI. Findings show bulging disc, possible herniation. I take the new findings back to the orthopedic doctor. He says if the neuro-surgeon will indeed collaborate he will do a fusion with BAK titanium implants. I am so excited, thinking this is finally over.

I have 3rd surgery on April 22nd, 1999. Major surgery. I am sent home but still in pain. I go to follow ups with all 3 doctors. A thoracic surgeon was there too to make the incisions. I ask them all if I am going to be ok. Yes, Yes, Yes. I also ask the orthopedic doctor why I'm still in pain. He says you have a little arachnoiditis.

 I'm here to tell you there is no such thing as a little arachnoiditis. Some assaults level off, not the progressive type. September 1999, neuro-surgeon signs me up for an intense 8 week exercise program at a chronic pain rehab facility. He agrees I have arachnoiditis too. I thought I was going to die. The pain went off the charts. Had to lay on ice constantly. The psychologist was very condescending towards me and told me to stop taking the Ativan and aspirin free Excedrin's I was using for pain. He said " I hope you don't have a seizure"!!! This was done in front of an entire board room of professionals.

I left after 4 weeks, I weaned myself from the Ativan and began herbal remedies. I was so proud of my accomplishment. The arachnoiditis kept progressing. I was sweating at night like I had cancer and the pain was so hot it felt like it went through to my very soul. I couldn't walk anymore and was bedridden. I needed help badly. No one would help me. Finally my family doctor in September 2000, prescribed Ultram. I had 4 seizures till he added the Valium. Also in September, I joined the support group to see how others were coping with this horrible disease. I couldn't believe all the ways that we get Arachnoiditis. 1 posed the question, "do disco‑grams cause Arachnoiditis?", sure enough, they do. Anything that uses a chemical insult.

Currently I am still seeking help for the pain that never lets up. I have written the Governor of my state, and have gone to every pain hospital to be found. Only insults, no help. The best they can offer is a Spinal cord stimulator or Morphine pump to be installed and expose the already advancing Arachnoiditis. That is a last resort in my opinion. I must go to New York city every month and try different medications to ease my pain. So far, all medicines have made me very ill. I am forced to buy and take medicine for the rest of my life. That in itself is a crime. I cling to the hope that someday a doctor or scientist will help us by using nerve regeneration or some technique that will ease our pain. Till that time it is constant, insidious pain every second of our lives.

Thank you for reading this. I hope it helps you and every one that you know to make an informed decision pertaining to various procedures that cause Arachnoiditis and Adhesive Arachnoiditis. God bless.

Linda Wade
July 06, 2001