It all began in my first month in my mother's womb in 1982. MRI's were not around so when I was born and they saw a perfectly healthy little baby with a fatty mass on her lower back, they X-rayed it. They found that I had a butterfly vertebrae at T10 and blocked vertebrae at T11. T10 is fused with T9 and T11. Dr. McCraney said that the fatty mass was just "baby fat" and my body would grow into it. They followed me for a few years. I was a very hyperactive child who just flipped and flopped all over the place, so there was no reason to think anything more could be there....
Fast forward through many years of Gymnastics, Basketball, Cross Country, Golf, Swimming, and Life guarding. The "bump" or "as I called it to make light of my big booty was "5th cheek" continued to grow with me.
June 2001, age:18.
I had just finished my freshman year at Delta State. A very active year at that. I was home working as a lifeguard at the courthouse for the summer. One afternoon after working, I was home alone working on summer school work. I crumpled a piece of paper to throw in the garbage can, missed, bent over to pick it up, and never came back up. I stretched for the phone, called my dad (mom was out of town). He rushes home with a co-worker, they carefully place me in the back of his car and drive me to St. Dominic for the first of many tests. *this is when my dad found out that I had a belly button ring when they asked if I had metal below my waist* (Where is mom when you need her the most!!!)
They proceeded to refer me to Dr. Bruce Senter at the MS Spine Clinic. He initially diagnosed me with a Tethered Spinal Cord and possible spina bifida (WHAT?!?!!?!?) He does an MRI because he's thinking this mass could be removed, no problem, untether the spinal cord and he would do the surgery. He does an MRI to make sure there are no other issues. Thank goodness he does the MRI.
The results from the MRI came back and there was more to it. The "fatty mass" is called a lipomylomeningecele. It's large, and connected to my spine, my spine is open (spina bifida occulta or occult spinal dysraphism) and the fat grew up my spine and tethered to T9. Thus, I was referred to Dr. Andrew Parent at UMC. He is a Pediatric Neurosurgeon who specializes in the Spinal Cord. (He was one of 3 doctors in the United States that we could choose from). It took a while to get in with him as to be expected. So Dr. Senter kept me well supplied with muscle relaxers and pain meds. That was the only thing that could get me through the pain until my surgery.
Dr. Parent knew exactly what he was looking at even though I was his oldest patient (19). He determined that if I didn't have the surgery that I would become paralyzed from the waist down (this happens in most undiagnosed adult cases). Most men are older and have worked lots before they become paralyzed, and most women are paralyzed when they go into labor or carry a child. This was the main reason for me to have the surgery. To prevent paralyses. The second reason being to stop the worsening of symptoms (mine at that time being pain).
That fall, I went back to DSU and had wonderful professors and friends who were very understanding about my situation and helped me make it through the semester. I had the surgery 6 months after my first muscle spasm. (during Christmas break)
It was my Daddy's birthday, 12/18/2001. I was admitted to Batson's Children's Hospital the night before. When they removed the mass, they had to take bone to cover the opening at the base of my spine. They also didn't realize that the nerves that hang loosely at the base of the spine, were tangled in all the fat. They had to untangle the nerves from the fat, which caused all of those nerves to go dead. They had to scrape the fat from inside the spinal cord which was 13 inches. What was to be a 2 hour surgery became an 8 hour surgery.
I remember every detail of being in the hospital on Christmas. I could do a whole blog dedicated to just that. My mom stayed with me every moment. My dad was there to let every one in that hospital know that they were messing with his baby. My sister was the most wonderful nurse and brought me fazoli's chicken alfredo when I could eat. She even fed me. My brother would bring movies after he got off work and sit and watch them with me, even though I would fall asleep after the first preview. My mom had decorated my room for Christmas and had a gift for me for each day I was in the hospital. I was face down on the bed for about 2 weeks. It was a long and painful recovery.
I tried to go back to school for the spring semester (that's my mentality) and my professors had been communicating with my mom and letting me do work correspondence until I could come back. The day I moved in was the day I moved out. I went back home and took a good 6 months to truly recover. Physical Therapy and all.
It's been 7 - 1/2 years this month. I've learned to deal with the pain. I have good days and bad. I don't travel well (more than 2 hours in the car is truly an accomplishment). If I have a very active day, the next day is full of Tylenol Arthritis (sometimes something stronger) and the bed. I can't sit or stand or lie down for any long period of time. No more running for me, but swimming really helps.
I made progress for a few years. The nerves began to wake up and I regained great use of my legs. My last MRI was about 4 years ago. It showed that I had 2 inches of fat still inside my spine and the fatty mass is still kind of there. I wasn't having a lot of complications and I seemed to have those "issues" under control. On my last follow-up, I was told that I didn't have to come back for 2 years!!! I was STOKED.
Until these past few months. It's been super hard. I have begun to have some odd spasms in my back and legs. I have sharp pains in my legs. A lot of the time they feel thick and heavy, like I don't have any control over them. The lower part of my back becomes numb easily. I have had lots of days with my legs just propped up. I've had to pick them up and stumble through the house. I often end up hunched over when walking through the halls at work. My limping has returned. Needless to say. I'm scared that something is happening! I still get burst of energy and do a lot, but no matter what, it will always be followed by pain. I like doing things, but I have found that I do a lot less these days due to this.
I have my MRI tomorrow, Monday morning. Please pray that we will find answers and relief.
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