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Where to have surgery?

  • sarahbernto
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2 months 2 weeks ago #1067 by sarahbernto
Where to have surgery? was created by sarahbernto
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!

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2 months 2 weeks ago #1068 by louise@tycoch
Replied by louise@tycoch on topic Where to have surgery?
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.
Take care.

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