I have a meningioma in the brain and an ependymoma in the spinal cord. I am talking at the moment about having surgery and wondered if anyone had had an op in the South of England and could recommend a centre of excellence? Also, does anyone have experience of recovery from surgery for a spinal cord ependymoma and can let me know what to expect? Thank you!
Hi Sarah. My name is Carolyn and I’m helping Carole who founded the forum to moderate at the moment.
I also had a ependymoma. I had a sub type called a myxo papillary ependymoma which is generally found in the film or conus . This is in the lumber and sacral region. I was diagnosed in 2007 and did not have surgery until 2013.
I had my surgery in the Midlands at QMC, which is a centre of excellence under a Consultant who specialises in complex spinal surgery .
I went in a week before my surgery as a semi elective emergency as my symptoms had worsened and following a MRI scan and a MDT meeting they felt surgery was required. I was sent home on steroids for a week ( which is usually the norm to reduce swelling ) and had my surgery the following Wednesday.
The surgery went well , lasting about 3 hours . I went to a high dependency ward post op and was there for just over a week as I developed an infection. Then spent a week on the general neurological ward.
Immediately after the surgery I felt not too bad considering what I had been through although I had low grade headaches and had to lie flat for a few days. I had a morphine drip too for the pain for a couple of days . They slowly sat me up over a couple of days and then sat me out for short periods . My first few walks were a bit strange as I staggered a bit and felt a bit week and tired.
Of course because of the infection I was in much longer than usual. I know a lot of people are home by day 4/5.
I hope this is helpful Sarah. Happy to offer any help you need to help you navigate this difficult period.