Normal Pressure Hydrocephalus

[aclinch]

My mother has been diagnosed with NPH after five frustrating years of specialists - the first of whom even suggested NPH as a possibility but he referred my mother for a second opinion with a surgeon who, without any medical procedures other than a previously completed scan, ruled my mother did not have NPH and recommended physiotherapy. Five years ago when NPH was only a possibility my mother refused to consider a shunt although she did not realise the full implications. Now she has been told she is not a good candidate for a shunt - she is over 80, has advanced (?) symptoms, is diabetic and would still oppose a shunt. In researching on the web, I have learned that untreated NPH is eventually fatal. What I cannot find is an explanation of what what happens to NPH patients that causes NPH to be fatal.

This is more than curiosity. My mother is partly being looked after by my father in a retirement home that has nursing assistance but not total care. She is incontinent, is becoming wheel chair bound and is suffering some short term memory loss and some mental confusion. She sleeps a lot. Nevertheless for much of the time, she is a good social partner for my father, who is working to the limits of his stamina to support her. What I do not know is how much worse can it get? How can I help my father plan without knowing exactly what the future holds. As depressing and upsetting as this is, is there someone who can offer me knowledge of what the future holds for my mother, my father and myself?

[Suzannexs]

I'm not sure where you are, aclinch, but seniors over 80 have been successfully shunted with good outcomes. (However if your mother refuses to consider it, then you have another problem.) It might be a good idea to try to get your mother a consult with a neurosurgeon who has experience with this surgery in NPH patients. You are correct, though, earlier diagnoses tend to lead to better prognoses. The Hydrocephalus Association in San Francisco has a toll-free number if you would like to talk to someone (I'm not sure how this would work if you are calling outside of the U.S., which might be your situation). Tel: 888-598-3789. Good luck to you.

[griffith d]

I have the same situation. My 86 year old mother just started to deteriorate, quickly.
I am finding no help with answering your same questions. It has been recommended she not have surgery.
Have you learned anything?
Donna

[aclinch]

In terms of what the end is like for NPH patients, I have learned very little. So much of the information available for the lay person concentrates upon a shunt as the treatment option. The MedFriendly Web Site contained about as much as I could find,(http://www.medfriendly.com/normalpressurehydrocephalus.html) namely "If a cause of normal pressure hydrocephalus cannot be identified and/or the shunting procedure does not work, the condition often gets worse and can lead to a progressive dementia and death. Death can occur because the extra cerebrospinal fluid can press on the brainstem, an area of the brain that controls many crucial life functions, such as breathing. "

Since my initial posting, we have received a temporary reprieve which has enabled me to delay searching for the eventual outcome.The specialist that gave us the definite diagnosis, indicated he had one last option that may or may not help temporarily. This was the drug Acetazolamide that he said could produce short term benefits both in terms of her physical balance/walking and in terms of her mental alertness. We were told the benefits would not be great and that if they occurred they would not be long lasting.

My mother started taking the medication but after a week she had become almost zombie like - we took her out for dinner, for example, and it took her the whole dinner to eat her soup - it was not that she was just slow but that she was totally absorbed in the eating process but all in slow motion. Conversation was none existent and she clearly was not processing all the input around her. When the second course arrived for her, she said she had already had her dinner and she had not ordered an 'extra' course. The Zombie state my mother was in was clearly not an expected reaction to the drug. My father who never doubted that this rapid deterioration was linked to the new drug made the decision on his own to stop giving her the drug. What happened quite quickly was that she not only returned, initially, to her pre-medicated state but she continued to improve and we obtained the benefits that were initially suggested as being possible.

The week we watched her go down hill was scary, the result, after stopping the medicine, was wonderful. True the improvement in mobility was minor to outside observers but it was major to those of us who were close to my mother and to my mother herself. What really was great was that she could interact in the real world. The mobility improvements have, as we were warned, proved temporary and the wheel chair has now come into its own again. My mother needs assistance last thing at night and first thing in the morning . Her incontinence never went away. Nevertheless, mental improvements are still apparent and we are so thankful for each passing day that my mother can initiate and hold conversations that we live for the present and we have delayed addressing the future. She has no memory of the very bad times. In reviewing the effects we noticed, the specialist stated last October (2007) that "the effect will not be sustained".

Sorry I cannot be more helpful and equally sorry that you, like me, have to search for answers .

[griffith d]

i found out this weekend, from my sister's employer, DR., that usually the finale is a stroke. I was scared about seizures he said that was unlikely, but not impossible.
Her mind is pretty good, a few slip ups.
Thank you for your time.
God bless you all.
Donna

[lorac]

I'm new to this forum, but have read with interest the many questions about NPH, symptoms and final outcome. My father was diagnosed with NPH about 6 years ago. It has been an ongoing, downhill deterioration. I don't wish to frighten anybody, but I can attest to what I have witnessed with my father. We witnessed the shuffling of the feet, the incontinence and memory loss, jumbling of his words when he tried to speak and glazed look in his eyes. When he still had some form of mental comprehension he emphatically stated "no shunt". We had to respect that. We have had a private nurse with him for over 6 years in his own apartment. As time past, he would sit in his chair during the day with the tv on, not really watching, but listening to the noise. The nurse was able to get him out of the chair to his walker to walk to the bathroom and to the table for meals. We would try to take him out to dinner on occasion, but it really became an ordeal for everyone involved - his body was like dead weight; getting him in and out of the car; loading the wheelchair; getting him into a restaurant and having to spoon feed him. There is a fluid build up in his body which, if not treated, causes congestive heart failure. This has all happened gradually over the 6 years. Fast forward to the end of July. My dad was taken to the ER due to a fluid build up in his body - he was about 2x his normal size. Medications were administered to drain the fluid. My dad was discharged from the hospital to his home with 24 hour hospice and given 2-4 weeks to live He had no life sustaining measures (he had an advanced directive.) He has no tubes, and no medication, just oxygen, so hospice discontinued their 24 hour stay with him since he is in no pain, and just lies in bed with his eyes closed 24 hours a day. Our nurse purees food for him and literally spoon feeds him like a 3 month old baby. She talks to him, bathes him and keeps him clean. Hospice nurses and aides stop by every week--day for an assessment. Ultimately, his kidneys will shut down or he will go into congestive heart failure. He appears to be peaceful and looks as though he is sleeping. It is agonizing to watch, and every day another little piece of my heart dies. We are coming upon the end of week 3...waiting for the final journey. I said all I had to say to my dad when I visited last week (I live 1500 miles away from him), I held his hand, told him it was ok if he needed to go and kissed him my final good-bye. My heart goes out to all of you who are going through this.

[lorac]

I posted in mid August about my father and NPH. Back in August, my father had just been released from the hospital and given 2-5 weeks to live. We had him brought home with 24 hour nursing care and hospice. Since I live 1500 miles away from him, I made a trip to visit with him and said my good-byes. All medication was discontinued, and we just wanted to keep him comfortable. Fast forward in time....it is now mid April and my father is in a state of existence, flat on his back in his bed totally uncommunicative. His nurse spoon feeds him baby food. When he does open his eyes, they are completely glazed over and we don't know if he is able to see or not. We do believe that he can hear. On occasion he will nod his head yes to a question asked, but for the most part, there is no response. I have again gone to visit with him, and again said my good-byes. He has been on this downward spiral since 2001. I don't think anyone of us really knew what the deterioration process was going to be. It is heartbreaking to see this happen to a loved one. We just hope and pray that when my father is ready to take his final journey, it will be a peaceful one.

[lil bird]

I also cannot find any information on what to expect and what causes it to be fatal. My father was diagnosed and we were told he was "not a good candidate for shunt placement" but not why. I'm assuming it is because of his other health conditons. Did or have you found any information since your posting that you could share with me? I would like to know what to expect in order to help my father who is being cared for by my mother. He is wheelchair bound, has memory loss, goes back in time (much as an Alzheimer patient) and is now experiencing intermittant incontinance and seizures. Any help would be appreciated.

[lorac]

I hope I can give you a general over-view of what we are experiencing with my dad's condition. In July 2008, he was given 2 to 5 weeks to live. Well, it's now 13 months later and he is still in a state of existence, flat on his back in bed with 24 hour nursing care and hospice several times per week. I don't know that the NPH itself can actually kill a person. Rather, from what we have been told, from the lack of mobility, perhaps a fluid build up can occur which in turn can cause congestive heart failure. There is always the possibility of pneumonia as well. Or, being bedridden, there is always the chance of a blood clot from lack of movement.

From our own experience with my father, he had been able to get around somewhat with a walker and his nurse holding on to the back of his belt to keep him from falling. However, walking was a very laborious task. When he was able to talk, words would come out garbled and made no sense. He was incontinent. We discontinued ALL medication a year ago; my father still has the ability (or perhaps I should say reflex) to open his mouth when a spoon is placed next to his lips with baby food on it. My heart goes out to you. These poor people are literally trapped within their own bodies unable to communicate. Although my father does not talk, he can hear and on occasion will nod his head yes when asked a question. It is heartbreaking. I have bid him goodbye twice already, and in 2 weeks will be heading back down to Florida to see him yet again telling him good-bye. Your mother has the task of caring for a loved one who is only going to deteriorate. My suggestion to you, if at all possible, is to try to get some help to come into the house to give your mother a break and to help her with the day-to-day care of your dad.

As far as your dad not being a good candidate for a shunt, I do not recall if you posted your dad's age. My dad is an old man, but even 5 years ago his neurologist told us due to his advanced age, he would not consider a shunt. So, perhaps that is why your father is not a good candidate. Maybe you need to question his dr. on this.

Good luck to you on this. I wish the news was not so grim, but it is a steady, slow downward spiral.