As some of you know I live in England.i have had 1 decompression surgery and 2 dura grafts for reoccurring pusedomeningocele . Recent MRI scan shows that’s the pusedomeningocele has come back again and there is still no flow through the posterior. My NS is baffled and has now referred me to another NS in Birmingham who specialises in csf disorders. I would really appreciate anyone’s input to why there is still no flow? Still suffering horrendous headaches and neck pain.
Thanks
Denise x
Hi Mandy, thank you so much for your reply, means so much, feel very alone over here. Have never been tested for tethered cord so that is worth mentioning to the new NS in Birmingham. Have never been shunted even though the pusedomeningoceles keep on returning ?! I feel so let down by NS, he just seems to be baffled to what is going on. I’m now under a Mr Graham flint at the Queen Elizabeth hospital in Birmingham but can’t get an appointment till sept because he has such a long waiting list. He specialises in syringomylia and csf disorders so I’m hoping he will have some answers. The structural MRI showed an adequate decompression but still a remarked chiari malformation. Does this mean the tonsils are still lying low?
Thanks
Denise x
I have heard of the Walton and its only an hr away but unfortunately my NS has referred me to Birmingham to a Mr Flint x
Had a lovely email from a Dr Trumbles from Florida who explained that in America they treat their patients with diamox immediately post op to keep the pressure down in the cranium allowing the graft time to heal. Unfortunately this was never done and I think that Dr Trumbles was right, had that of happened then the pusedomeningocele might not have formed. Just wish I had the money to fly over to the states and have treatment there x
Thanks my American friends,wish I lived over there!! It’s because we don’t have private health over here, we have a NHS system that we pay tax out of wages yet we still have to wait 3 months to be seen by a consultant!! It’s terrible xx