Simular experiences?

[John Willems]

Hello, I'm John from the Netherlands, I guided my brother in his surgery and recovery of a spinal cord tumor August 2008. Had surgery by prof dr De Witte in Brusselles and was a succes (no disfunctions). After first quick recovery during the first 3 weeks things got worse again for the first time. They discovered that my brother Ruud had a (new)oedema above the surgery place, probably a reaction of the heavy operation. Since then declining, spontaneous pains, cramps and loss of strenght, sensibility and coordination. Still going worse! Is there someone else who had this same experience? The doktor (and he's one of the best chirgians in Europe) doesn't has any clues now. Neurological exams chowed a normal pattern (MRI, CT and EGC). It is not understood why the medicine Dexamethason (Cortisones) isn't giving any results. Normally this would expell the fluids (oedema). Who has some directions?

Thx in advance from John.

[robin]

Unfortunately, my sister experienced the same thing. after the removal of a large tumour, she got better for a few weeks then had a rapid decline - and they had (and have) no idea why. something was seen on her mri, was biopsied and found to be nothing but spinal fluid that had moved into space left open after removal of the tumour. she has slowly regained strength - and no one knows why that is either.

I am sure that this info does not help. I hope, however, that your brother recovers.

[John Willems]

To the person who replied on 25th october. Sorry I don't know your name.

Thx for reply. Hope your sister is doing well too. We know now that phisicly there's nothing wrong now (MRI showed nothing wrong). Doctors think that the medicine Dexamethason is to blame. Now decreasing the dosis.

John Willems