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Jul 29 2016

Jo Blackford’s Story

Age 41. Female. Seattle, WA.
Type: Myxopapillary ependymoma of the filum terminale, Grade I, L2-L3.
Surgery: late April 2016. Dr Timothy Steege. Swedish Medical Center, Seattle.

I found this website after my surgery, and to be honest, I’m pleased I didn’t read too much about SCT beforehand. Call it optimism or denial, but I wasn’t too worried about my condition, and I turned out to be very lucky compared to many people with ependymoma. I wanted to share my story to let others know that it is possible to be lucky and to come out of surgery practically unscathed.

My symptoms began a couple of weeks into 2016. I had an ache near my tail bone one day, then a sore point in my hip. I would have a sharp sciatic pain radiating through buttock when I was walking if I turned my body to look for traffic as I crossed the street. The pain would move around and was quite unpredictable. Over time the pain got more pronounced, and sitting made it worse, so I kept standing and moving as much as possible (and learned to check for traffic by turning my whole body, not just my head and shoulders!) I thought I might see some improvement when I went to stay with a friend in late February — walking most of the day, not slouching around on my broken-down couch, sleeping in a different bed — but although we were able to walk about 40 miles around the city that week, at night I found it very difficult to find a comfortable sleeping posture. And when I got home my pain got worse.

By the time I got an appointment to see my primary care doctor my sciatica was radiating into my leg and she referred me for physical therapy. I hadn’t fallen or injured myself so they didn’t take any scans, wanting to save me money, and trusting that the PT would reveal the problem as a disc issue that could be healed with PT. We located the issue to the lumbar spine, presumed to be a bulging disc, but the twice weekly treatments sometimes seemed to make the problem better but at other times worse. In the 3 weeks I spent doing PT and working on improving my posture the pain gradually moved into both buttocks, hips, and legs, eventually radiating down to the tops of my ankles. Sleeping became very difficult — I would have waves of pain pulsing down both legs as I would start to relax. I had a couple of car rides that were excruciatingly painful, where no change in posture or positioning could help. Walking didn’t always relieve the pain as it had before.

By this time my therapist realized that the PT wasn’t working, and sent me back to my doctor to get scans to see if I needed a steroid injection or disc surgery. My doctor gave me gabapentin (gradually increased to 900mg a day) to help manage the pain, as Alleve was not making very much difference. My X-rays were normal, but a lumbar MRI showed a mass growing in my spinal column. I called him Pete, jokingly, because I thought he might be a “pea-sized tumor” but a subsequent MRI with contrast showed that he was actually 3.4cm tall — more of a grape tomato than the pea I had optimistically imagined. I continued to curse him using the name Pete right through my treatment. It was very helpful to personify him. When I would wake up and turn over with an “ow!” my husband would say “oh, I guess Pete is awake too.” Pete was a pain in the butt, literally! I let the operating room staff know his name so they could use it during the surgery. The last thing I remember before the anesthesia took over was the OR nurse telling me that Pete would be easier to say than “intradural extramedullary tumor”.

My surgery at the end of April for a complete resection of an “intradural extramedullary tumor in the cauda equina at L2-L3” went very well. The surgical report says that on opening the dura “the mat of cauda equina nerves bulged out into the opening” and the tumor was located on the filum terminale, which was cut above and below the tumor. The mass was “very soft and had to be decompressed internally before it could be safely removed from among the roots of the cauda equina.” The pathology showed characteristic features of ependymoma.

When I woke up in recovery I immediately checked to see if I could feel and move all of my lower body. I asked if the surgery went well and was told that Pete was completely removed and that no important nerves had to be cut in the process, the filum terminale being an expendable structure, at which point I cried my eyes out in relief. I was very lucky not to have any collateral nerve damage and not very much pain. I spent Thursday night through Saturday lunchtime lying flat, mostly on my back, although I was turned to my side to try to sleep part of the time. Eating was also a challenge, lying so flat. On Saturday afternoon I gradually increased the incline of the hospital bed until I was mostly sitting up, no sign of CSF leaks, thank goodness! and I was able to stand and use the commode chair near my bed. On Sunday morning I was able to use a walker to get to the bathroom on my own, and then to walk unaided, and I was able to sit up in a regular chair long enough to be discharged early afternoon and brave the 90 minute ride home.

I had only moderate pain and two days after I came home I switched my narcotics for Tylenol after realizing that feeling nauseous was worse than the aches or stabbing pain in my back as the incision healed. I spent a lot of time resting over the next 2 weeks, but I felt better each day. I was able to go for walks around my neighborhood within 5 days of the surgery and on the day of my 2 week check up with my doctor I was able to walk 2 miles uphill to his office and 2 miles home again afterwards, albeit a little more slowly than usual. By that time my scar was fairly well healed and there was just a little swelling. As I write this, 6 weeks after the surgery, the only remaining effect I notice is an occasional pulling on the scar tissue as I move around. I have completely normal strength and sensation in my lower limbs.

I know I am very lucky. I will have to have scans every year for the next 5 years, and periodically after that for many years, and I dread finding that I have a re-occurence of this ependymoma if any cells floated away from Pete, especially as my surgeon said it might re-occur anywhere in my spinal column or brain, and that it might not be as slow growing as the original (which he believed might have been growing there my whole life). I don’t know if I will be so lucky again as to have a very slow growing tumor in a location where surgical removal leaves me with no ill effects. I will also need to reconsider my insurance coverage, since the 3 MRIs I will need each year cost about the same as my current $3000 deductible. Thank goodness we didn’t go with a lower level plan! This has been an expensive experience despite decent insurance coverage.

After reading some other SCT stories here I am just very grateful not to have suffered any permanent damage from Pete or the surgery to remove him. I hope others reading this story will also have luck and good surgeons on their side.