From Mystery Illness to a Spinal Cord Tumor Diagnosis

My Journey with a Spinal Cord Tumor

In the fall of 2000 I was working full time and raising a family with my husband, Bill. We still had four children home at that time, age nineteen to (almost) three. One girl and three little boys. We had our hands full, but we had an easy, sweet relationship and worked  well together.

When I felt my left foot starting to get numb, I ignored it. When my rib cage started to hurt in little jabs here and there it would startle me. When my left buttock started to hurt, I made an appointment with my doctor. By then I was numb up to my knee. The night before my appointment I told my husband what was happening to me. I just did not want him to worry, it had to be something dumb with these weird symptoms!

My doctor ordered a MRI of my lumbar spine after I told him what was happening to me. By the time I went in for my follow up appointment I was numb up to my hip and could barely stand upright, yet the MRI came back fine so my doctor said I must have pulled a muscle or something.

Doctor with tablet computer Isolated over white background From this point on I can only tell you that my life was complete agony as I slowly deteriorated and my doctor kept insisting that nothing serious could be wrong with me.I became so desperate at one point that I went to see my OB doctor who I love. I burst into tears as soon as he came through the door. After hearing my story and seeing my obvious distress, he faxed a note to my doctor suggesting that I was suffering from nerve damage. Unfortunately for me I’m sure that note was disregarded.

Finally, to get rid of me, I think, my doctor sent me to an orthopedic specialist. He took x-rays of my back and examined me. Then he also tried telling me that he could not find anything wrong. I could not take it anymore! I broke down weeping and asked him how I was supposed to live like this. I could not sit at all by then, I could not stand upright, and I was absolutely insane with pain. A miracle! He relented and sent me for a MRI of my entire spine.

BINGO! There it was, shinning like a beacon from the dye they used in the MRI. Three words I will have in my life forever. The three scariest word I have ever known: Spinal Cord Tumor. Things couldn’t happen fast enough all of a sudden. I had a neurosurgeon within the hour. That was Memorial weekend 2001, on Friday, and I was set up for surgery on Tuesday. My husband was petrified I know and when we got home he tried to research sct’s on the internet and there was almost zero information. I did not want to know anything until after the surgery. The doctors sudden haste to operate filled me with great fear.

The tumor was at T6 to T9, and they were confident that it was a Lipoma, a fatty tumor that is actually in the cord itself. I was fortunate that my surgeon did a great job of removing as much of the tumor as he could without damaging me. He had to leave about thirty percent of the tumor on the cord. There is also scar tissue now, and my cord is tethered to one side. He could not answer all the questions I had about why my body was still so hurt so he referred me to a neurologist when I left the hospital.

Oh the battles I have raged just to have a semi normal life. My family suffered with me and because of me. I lost almost five years of my life by getting involved with the wrong kind of pain management. I would  do research for weeks at a time, sometimes finding little snipits of good information and at other times nothing. I found Spine Universe and just soaked up information. Although they didn’t talk about tumors, they had exercises for a hurt back, information on the newest laser surgeries, stuff I would take to my current doctor to see if it would work on me. Then I would  get discouraged and forget about research for a year or so. I have been to every neurosurgeon in my city, and have spoken to some of the best surgeons from hospitals around the country. I wanted to be fixed. I refused to believe that I could not be fixed. No one could  answer my questions. Doctors I loved and trusted moved or retired and I ended up with no doctor, no pain management, and almost out of my mind.

My husband had a firm grip on me though and his presence got me through. I had to face reality: I could not be “fixed” and I needed to get a grip and take my recovery into my own hands. I found a wonderful new PCP who by some miracle got me into a new pain management where I receive proper PT and meds.I can finally walk without looking like I am drunk. I am standing upright (sometimes I do have to remind myself). The best thing is that I am in less pain now.

Recently I had the extraordinary opportunity of meeting not just  one person, but many people just like me when I attended the fifth annual conference of the Spinal Cord Tumor Association. I cannot tell you how good it felt to be with people that I could actually talk to and they knew what I meant. I felt a great sadness that they were ill also, but for 12 years I have tried explaining things to people with flat faces and this one time I've seen the light in peoples eyes, recognition in their expression!  Yes they knew what I was talking about, they felt what I was saying! We laughed together about some of the dumb things doctors have said to us, and other funny things unique to nerve damaged bodies. The speakers were awesome. I learned a lot even though I thought I already knew a lot. I did not want to leave when it was all over. Even though SCTA has a web page and is on Facebook, at home I would be isolated once again.

I cannot even tell you all the effects my tumor had on our children. It brought my entire family closer. I am the baby girl with two older brothers and just my Mother now. Our older children rallied around also and were very helpful. My littlest one in plain thinking was the most practical of them all. When Bill explained to him how sick I was he asked if he he could just go find another, he did not want a “broken”  Mother. We did learn to live alright despite all that was broken. My son says now that I might not have been able to do everything other mothers could do, but I was always there to  do things other mothers would not do. I guess that makes sense, if there is any sense to be made.

One word about the doctors and being misdiagnosed. Spinal cord tumors are so rare that most doctors will never come across one. I wasn’t angry that he didn’t find the tumor sooner, it was because he did not look. I have not seen my doctor since he sent me to the specialist. He did not send me any message or anything wishing me well. No compassion at all. He was my doctor for fifteen years. I have forgiven him.