Myxopapillary ependymoma

I've always thought blogs were stupid, but now I've started one out of boredom, emotional turmoil, and the belief that people should know what I'm going through. This blog will (hopefully) be short lived. It will chronicle my ups, downs, and in betweens. Posts are written with the understanding that readers know me and would like updates of what I've endured.

To those who do not know me, this information will help you understand what I'm going through.

I'm 19, female, and a college student in Southern California.

Now comes the story....

This past Halloween, doctors "discovered" a tumor in my spine and concluded that I was moments from complete paralysis of my legs. I had a lumbar laminectomy (L1-L4) two weeks later, and the Neurosurgeon (NS) was able to remove about 95% of the tumor. It was benign and about 8 inches long. It was pink and according to the NS, resembled spaghetti in mucous.

Now how the hell did I end up with an 8 inch tumor in my spine? I have no idea.

For four years, I'd visited the doctor with complaints of pain in my lower back and legs. Prospective remedies ranged from 6 sessions of physical therapy to yoga to weight loss (I am 5'2" and 125 lbs. Weight loss was an absurd suggestion).

This past September, I began to lose function in my legs. Pain escalated, I walked very slowly, and I had to drag myself upstairs). I developed a foot drop in my left leg and fell frequently... I couldn't run or jump, and I had become extremely weak. By October, I became extremely depressed and decided that I could not live life in such a condition.

I came home and saw several doctors. They discovered abnormal weakness in my legs and that my reflexes no longer worked (you know... when they tap your knee with the mallot thingy... my legs didn't respond to that). I had an MRI on October 30 and on Halloween, they found the tumor.

The next week, I met with a neurosurgeon who expressed that I need surgery ASAP. At this point, we were unsure if the tumor was cancerous or if it had traveled to my brain. (A brain MRI later confirmed that I did not have additional tumors). Within two days, I withdrew from school. I was not financially reimbursed for the withdrawal, and I did not receive credit for my dropped courses. My school is a 6 hour drive from home, and November 4, my parents helped move me out of my dorm.

Surgery was a bitch. It was a 5 hour procedure, and I was confined to 48 hour flat bedrest (I had to lie flat in bed for two days). The type of surgery I had, a lumbar laminectomy, involved breaking my spine in about 5 places... so we had to be careful about that. While on bedrest, I contracted a stomach virus which caused 18 rounds of diarrhea (in a 24 hour period). I felt humiliated and had to wear a diapper.

Diarrhea sucked, but I was so lucky. The surgery did not cause additional nerve damage. I could feel my lower extremities, and I began to walk (with a walker) 4 days after my surgery. I was discharged after 8 days in the hospital.


Physically, I'm recovering at light speed. I no longer use a walker. I have to wear a back brace for 3 months, but that is no big deal. It's really a miracle that I can walk-- let alone that I've trashed the walker.

I've learned that tumors like mine (size-wise) inevitably lead to paralysis/loss of bladder and bowel function. I have all function in my legs, and I may even have more than before the surgery.... it's too early to tell.

The type of tumor I have is called a myxopapillary ependymoma. I've found an online support group for adult ependymoma survivors, but I've been unable to find anyone my age or anyone who experienced a situation like mine. From research I've done, I've learned that these tumors are extremely rare and have no known environmental cause.

My ordeal isn't over. Five to ten percent of the tumor remains in my spine. They are microscopic fragments, and there is a chance that the tumor will grow back. There is a chance that I have microscopic fragments in my brain, which are undetectable by MRIs at this point. I will probably have to have regular brain and spine MRIs to monitor growth.

The neurosurgeon also wants me to get radiation. I plan to meet with two radiation oncologists next week to explore my options. Right now, I'm looking at infertility, another semester off from school, sickness, weakness, premature menopause, etc. I'm not sure if I want to do it, but in the end, radiation may be the best option for me. I've felt nothing short of overwhelmed, and I'm freaking out... but I will not have a concrete agenda until I meet with these radiologists.

Right now, I'm exploring egg freezing. I've learned that it costs 20 G and that technology's unreliable. I don't know if I want kids, but I don't want to lose the opportunity before I have a chance to decide.

I've looked everywhere to find people like me, but they seem to be nowhere. Nowhere is a 19 year old ependymoma "survivor" who has undergone radiation for tumor entwined in her nerves. Everyone who I've talked to has been much older and have had their children or have been male or have had tumors in different parts of the spine/brain etc.

Today's one of my less optimistic days, but those are expected.