AuldReekie52
08-08-2008, 04:30 PM
Hi, My name is Elaine and I have a 37 yr old nephew born with spina bifida
myelomeningocele and hydrocephalus. Over the years he has suffered numerous associated health problems but until about 10 years ago held a civil service position and was very intelligent. Unfortunately, 10 years ago he
had severe problems with his shunt, causing a piece to break off and lodge in his brain somewhere. The surgeons were unable to remove the piece which is tiny. Since this time, Alex has had a completely personality change. He has no short term memory and cannot hold an conversation for longer than a few words. He's also unable to work. But the worst thing is the seizures.
Prior to 1997 he would have an occasional small seizure with no lasting effects. Since that time though his sieizures have become more and more prolonged. His last one last 27 1/2 hours. During this time, he cannot sleep
and someone has to sit with him at all times to ensure he doesn't choke.
Until yesterday the only thing prescribed for these "shakes" was Sinemet -
a drug used to help control Parkinson's disease. Obviously it has been useless.
My question is, do any of the listers here have similar problems and if so what medication works well? I don't remember the name of his new medication. But my sister has been given 4 months to wean him off the Sinemet and replace it with the new.
My nephew lives in Glasgow, Scotland, and I can't help feeling if he was in the United States he would receive better care. I may be totally wrong on this point, but I would be very interested to hear from other "older" individuals like himself who may have suffered similar problems which have been treated more efficiently. Since he almost died 10 years ago, his Dr's have refused to operate again and my sister has been told he just has to "put up with the shakes". Which is all very well, but his quality of life is appalling.
Thank you for any advice,
Elaine
California
myelomeningocele and hydrocephalus. Over the years he has suffered numerous associated health problems but until about 10 years ago held a civil service position and was very intelligent. Unfortunately, 10 years ago he
had severe problems with his shunt, causing a piece to break off and lodge in his brain somewhere. The surgeons were unable to remove the piece which is tiny. Since this time, Alex has had a completely personality change. He has no short term memory and cannot hold an conversation for longer than a few words. He's also unable to work. But the worst thing is the seizures.
Prior to 1997 he would have an occasional small seizure with no lasting effects. Since that time though his sieizures have become more and more prolonged. His last one last 27 1/2 hours. During this time, he cannot sleep
and someone has to sit with him at all times to ensure he doesn't choke.
Until yesterday the only thing prescribed for these "shakes" was Sinemet -
a drug used to help control Parkinson's disease. Obviously it has been useless.
My question is, do any of the listers here have similar problems and if so what medication works well? I don't remember the name of his new medication. But my sister has been given 4 months to wean him off the Sinemet and replace it with the new.
My nephew lives in Glasgow, Scotland, and I can't help feeling if he was in the United States he would receive better care. I may be totally wrong on this point, but I would be very interested to hear from other "older" individuals like himself who may have suffered similar problems which have been treated more efficiently. Since he almost died 10 years ago, his Dr's have refused to operate again and my sister has been told he just has to "put up with the shakes". Which is all very well, but his quality of life is appalling.
Thank you for any advice,
Elaine
California