Normal Pressure Hydrocephalus

[melanie dazel]

My mom is 75 years old, unable to walk, incontinent and unable to communicate properly.
I have seen many doctors regarding my mom's continuing deteriorating health. I have been told that it was due to age / depression / dementia.

Medication given to my mom to treat her "depression" merely aggravated her condition.

In January 2007, she fell and hit her head. I took her to the GP who, after examining her, informed me that she was fine. Within two weeks she stopped being able to communicate, walk and eventually became incontinent.

She was booked into hospital where the doctors ran numerous tests. The cat-scan stated that she had NHP and she was referred to a neurologist. The neurologist visited and informed us that my mom was not necessarily suffering from NHP but could rather be suffering from mad cow's disease or an infection in the brain. The fluid showing up on the scans was probably due to my mom's shrinking brain due to dementia. He then attempted to perform a lumbar punch - three times. My mom was in absolute agony. I promptly booked her out of the hospital and took her to a specialist psychiatrist

The psychiatrist also overlooked the scans and diagnosed dementia. My mom was placed on Epilim, Etomine and Zolpidem. My mom's condition continued to worsen. She did not sleep, was always screaming and would not eat. For 9 months my mom continued to suffer despite all the money being paid to the doctors.

I eventually stopped all my mom's medication and, after a while, placed her back onto the Etomine only, with a Zolpidem should she have problems sleeping. My mom has improved greatly in that she now communicates with us (although not well), is eating and sleeping well. She is still aggitated at times and cries and, due to the loss of muscles due to inactivity, is still incontinent and unable to walk. She is in constant pain and nauseous.

Eventually, about a week ago, I happened to come across an article on NHP. It described all my mom's symptoms prior to her deterioration and post - the headaches, gait, nausea, confusion, changes in emotion, dizziness mental deterioration etc. I then made an appointment to see another neurologist. He, unfortunately, told me that there was nothing that could be done for my mother due to her age, late identification of condition and deterioration in health. He has prescribed medication for Parkinson's to help alleviate her symptoms.

Is there any advice that can be given to me on what further action I can take or treatment that can be done. Someone mentioned that there was medication available to remove excess water from the brain. Has anyone heard of this?

I live in South Africa and, so far as I am aware, there are no support groups.

Please help.

Melanie

[marcoroni]

Dear Melanie,
we are ex Johannesburgers living in the USA.
The level of health care has deteriorated horribly since the brain drain of the eighties and nineties occurred in South Africa. Any doctor that showed any promise or talent was lured away rapidly by the big money in the USA.
I lost my father in 2006 to completely misdiagnosed conditions instead of NPT. He languished in the Rand Hospital as an Alzheimer's, or "senile dementia" patient until his death.
The symptoms were clear cut while he was alive, and in hindsight should have been correctly diagnosed immediately.
I did not know about NPT. It was only due to a chance glance at a newpaper article published by a columnist medical physician here in the USA that I learned of the existence of NPT.
Had I known of this condition earlier I am sure that he would have had a shunt inserted and lived to the ripe old age his father live to........ 98 years old without a sick day in his life.
My fathers NPT manifested itself after he was severely pistol whipped by robbers in his bedroom.
His health and bright sparkling countenance deteriorated rapidly thereafter.
I urge you to continue pursuing seeking a solution to your mothers plight.
It will be difficult getting anywhere with the SA doctors.
You may try changing her name with every visit to each different doctor.
They all pass the same file and diagnoses to one another and thus all sing the same song and have the same diagnoses as the previous consultation because they got her file before your new first consultation with the new doctor. (Supposedly for insurance purposes, in this way none of them are going to venture anything new because it may embarrass the previous doctors diagnosis.)
Using this system, they are totally united against you in any court of law, and that is what they fear the most.
Use your own money for the initial consultation as a "Private Patient".
It is impossible to attempt this solution using your medical aid.
If you change the name with each doctor you consult, and understand what I am trying to tell you, perhaps you and your mom will have a better chance of getting new insight and diagnoses. Do this two or three times and a pattern will emerge that will be new and more genuine and revealing.
Not the same old mistake oft repeated by every subsequent doctor consulted in the lager of self protection.

[melanie dazel]

Dear Marcoroni

Thank you for your advice. I will certainly continue to prevail in obtaining a proper diagnosis of my mother's condition.
It is heart-breaking to see her in her present condition. The person that she was emerges now and again and brings such joy to my heart. To see her return to her old self again is a dream of mine.
My only hopes are that the time taken to effect a proper diagnosis has not resulted in permanent and irreversable damage and that I can actually find a "doctor" in this country who knows what he/she is doing.
Thank you once again for your kind words of advice.
Melanie

[marcoroni]

My only contribution would be to contact [moderator note: personal information has been removed] who was well known to me at the Hillbrow Clinic in Johannesburg when it premiered as the center of neuro surgery in JHB. He was a brain specialist at the time practicing there almost 40 years ago.
Go to any [moderator note: personal information has been removed] who is a specialist neuro surgeon. How many can there be?
He saved my life from certain death from severe head trauma resulting from a near fatal car crash in my youth. You could also contact the SA medica association to track him down.
I am already almost 60 so chances are slim, but God is good. Perhaps his children succeeded him. The moral of the story is get a simple little general practitioner to refer you to a neuro surgeon. Neuro surgeons are the only guys who know what is going on. Preferably with the name of [moderator note: personal information has been removed] or similar.

[lil bird]

my father was recently diagnosed with nph and had/has a lot of the symptoms you mentioned. He is 79 and they told us he was not a suitable candidate for shunt placement. Has anyone told you what to expect or what the progression of this will be? I can't find anything and am getting very frustrated! They tell you what can be done but not what happens when surgery isn't possible. I just want to know what to expect so that I may help my dad. My mother is caring for him now and I don't know how much longer she can endure it and if I knew what to expect I could do whatever possible to help her. Any advice would be much appreciated.