1. < Brain & Nervous System
Profile picture for nekcarolyn

please describe the changes with NPH as it progresses.

Posted by nekcarolyn @nekcarolyn, Feb 23 3:40pm

starting a journey down the NPH road. but the Doctors have not described what to expect for symptoms and changes in behavior.
what is a normal progression of changes? what is the final stage in these changes, to know that things will not progress?
can this disease end in death? I know that is a bit blunt, but i want to know. thank you

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for sandrabum
sandrabum | @sandrabum | Feb 24 11:33am

Yes, please, I would like to know. I am 56 years old with NPH. I am doing exceptionally well after my shunt implant, however, I have a few moments when the symptoms come back for short periods of time, especially cognitively. I am doing very well; because I am not "cured" of NPH, that the shunt is just a mechanical way to manage the fluid for now. I would like to know what to expect....Thank you.

REPLY
1 reply
Profile picture for arrighi
arrighi | @arrighi | Mar 4 8:15am
In reply to @sandrabum "Yes, please, I would like to know. I am 56 years old with NPH. I am..." + (show)
Profile picture for sandrabum @sandrabum

Yes, please, I would like to know. I am 56 years old with NPH. I am doing exceptionally well after my shunt implant, however, I have a few moments when the symptoms come back for short periods of time, especially cognitively. I am doing very well; because I am not "cured" of NPH, that the shunt is just a mechanical way to manage the fluid for now. I would like to know what to expect....Thank you.

Jump to this post

@sandrabum
My daughter has NPH and has gone through all the testing and has been deemed a candidate for a shunt. She hasn’t seen a neurosurgeon yet. She is in her 50s and has epilepsy. We’re concerned that a shunt could increase her seizure activity. It’s been difficult to find anyone who has epilepsy and received a shunt. Thank you for sharing your experience. We’re hoping to hear more from you and others. We wish you the very best health.
My daughter has joined the hydrocephalus association support group. Their next zoom meeting is March 8. I think it is at 6 pm. Last month was her first time attending. People talk about their experience with their shunt.

REPLY
2 replies
Profile picture for arrighi
arrighi | @arrighi | Mar 4 12:32pm
In reply to @arrighi "@sandrabum My daughter has NPH and has gone through all the testing and has been deemed..." + (show)
Profile picture for arrighi @arrighi

@sandrabum
My daughter has NPH and has gone through all the testing and has been deemed a candidate for a shunt. She hasn’t seen a neurosurgeon yet. She is in her 50s and has epilepsy. We’re concerned that a shunt could increase her seizure activity. It’s been difficult to find anyone who has epilepsy and received a shunt. Thank you for sharing your experience. We’re hoping to hear more from you and others. We wish you the very best health.
My daughter has joined the hydrocephalus association support group. Their next zoom meeting is March 8. I think it is at 6 pm. Last month was her first time attending. People talk about their experience with their shunt.

Jump to this post

@arrighi
The next hydrocephalus support meeting is March 18, at 6pm est. they are held the third Wednesday of every month. It’s a zoom meeting.

REPLY
Profile picture for sandrabum
sandrabum | @sandrabum | Mar 4 2:23pm
In reply to @arrighi "@sandrabum My daughter has NPH and has gone through all the testing and has been deemed..." + (show)
Profile picture for arrighi @arrighi

@sandrabum
My daughter has NPH and has gone through all the testing and has been deemed a candidate for a shunt. She hasn’t seen a neurosurgeon yet. She is in her 50s and has epilepsy. We’re concerned that a shunt could increase her seizure activity. It’s been difficult to find anyone who has epilepsy and received a shunt. Thank you for sharing your experience. We’re hoping to hear more from you and others. We wish you the very best health.
My daughter has joined the hydrocephalus association support group. Their next zoom meeting is March 8. I think it is at 6 pm. Last month was her first time attending. People talk about their experience with their shunt.

Jump to this post

@arrighi hello, thank you for sharing what your daughter is going through. I have never been diagnosed with epilepsy. I do not have any experience or knowledge what effects from NPH/epilepsy. I wish your daughter well and good health. It took me 10 years for doctors to figure out what I had; many years of falling, cognitive issues and it was always diagnosed as normal aging. I send good thoughts for finding the right treatment.

REPLY
Please sign in or register to post a reply.