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A Personal Story
Last Updated 04/09/05

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     My father was diagnosed with NPH the summer of 2002 at the age of  79.  Although familiar with hydrocephalus (a niece who has Spina Bifida), we had never heard of it developing in an older person.

     I found a lot of articles on the condition but not many first person stories.  The information available online ranged from wildly optimistic (the manufacturer of the programmable shunt) to extremely frightening reports of risks and complications,  to desperate pleas for help from other families.   Every case is different, but I thought I'd report  on our experience with the condition and the shunt surgery, in case someone else is trying to make a decision.

     My dad's symptoms were evident for around four years before he was diagnosed, beginning with gait disturbance, balance problems, and incontinence (attributed to enlarged prostate).   The first symptom that appeared was his gait.  He started leaning forward from the waist, and his walk changed.  When he stood still for more than a minute, he would gradually lean forward until he had to hold onto something.  Seated in a booth or chair without arms, he would lean sideways until almost falling onto the floor.  He did not feel dizzy, and was unaware that he was no longer upright.

     He had several sudden falls over the years.  Once, he went across the creek in his own (large and sloping) backyard, to see if the azaleas were blooming.  He fell in the creek, and it took him three hours to crawl back up the the house.  He was covered with scratches.  In the later years, he would try to turn, and just go down on the floor.  He would be unable to get up without assistance. 

     His short term memory loss and confusion gradually increased, and he had times of such confusion that he refers to them as "black outs".  He lost all of the events and the people he met during those years. 

     Urinary urgency became a huge problem, making it almost impossible not to have accidents.  This probably is the symptom that patients hide most from their doctors.   He was being treated by a urologist for an enlarged prostate, but it seems that urologists who see a lot of these patients are not really intuned to the triad of symptoms that may indicate NPH. 

     If my father was ill with a virus or infection, all of his symptoms increased dramatically, causing extreme confusion, incontinence, and inability to walk without assistance. 

     By the time he was diagnosed, the ventricles of his brain were so enlarged, his neurologist discouraged him from having shunt surgery.  I read everything I could find about NPH and the success rate of the shunt, and what I read was frightening - possibility of infection, mechanical failure of the shunt, stroke, chronic pain.   He came home and waited to die.   He agreed to a consultation with a neurosurgeon, but only to appease us...he was convinced that his time was short and that there was no hope.

     His symptoms worsened every day.  Fortunately, months later, his primary care doctor finally convinced him to have the surgery.  We all agreed that, even considering the possible side effects of surgery (including death), anything was better than the alternative.  We also agreed that, even if the surgery only slowed down the progression, it was worth it to our family.  Although the neurosurgeon predicted an 80% chance of improvement, it's fair to say that our expectations were very modest.

     I should stress that prior to the onset of this condition, my father was generally in good physical health.  He had heart by-pass surgery in 1986, and since then had not smoked, had watched his diet, and had walked 3-5 miles a day. Except for slightly high blood pressure, he was in good condition for a 79 year old.

     Typically, the patient would undergo some time of spinal drain, either a one time lumbar puncture, or an in-patient drain in the hospital over a period of days, to help predict the success of a shunt.  Our neurosurgeon did not require that step, and we were glad to skip it.

     The surgery was performed  in February 2003 at Emory University Hospital in Atlanta, by Dr. Nelson Oyesiku.  He was only in the hospital for one night, and that seemed a bit short for us.   For a few days after surgery, all of his symptoms were far worse than before surgery.  We took turns spending the night at his house, and had a home health care worker there during the day. However, as he recovered from the actual operation and anesthesia, his symptoms improved steadily all week.

     He has had no pain or discomfort from the shunt itself (I'm sure this varies from person to person). His balance and gait have improved about 80%, and his incontinence has improved significantly.

     Although his short term memory has not improved much, he is more alert, more *present*, and less depressed.  He's sleepy all the time, but admits that he doesn't sleep well at night.  

     We don't know what to expect in a year or two, but we feel that the surgery was well worth it if it gives him good months or even years living more or less independently.

August 2003 Update:

My dad is still doing well,  and walking about 1 1/2 miles every day in the park.  After his months of isolation, he enjoys driving to the park and the grocery store, where everyone knows him.  He is scheduled for cataract surgery in September, and it was his idea!  He wants to be able to see clearly and enjoy reading again.

He still gets sleepy and takes frequent short naps.  However, he is alert most of the time and seems interested in what's going on around him. 

We flew from Atlanta to Portland, Oregon in June for a family memorial service.  Navigating the Atlanta airport is no picnic, and on the return flight, we were delayed for almost two hours on the runway in Denver, waiting for a storm to pass.  We finally arrived home in Atlanta at 3:30 a.m.,  and I think he weathered the long trip better than I did!  He told my sisters that he felt sorry for me because I was so tired and my lower back was bothering me during the long flight!

January 30, 2004 Update:

Everything is going very well!  So far, none of the symptoms have returned.  A very good year!

December 9, 2004:

My dad is doing well, and now walking 2-3 miles each day.   He'll be 82 this spring.

We have discovered that if there is an underlying infection or illness, he experiences an immediate increase in symptoms, especially short term memory and incontinence.  Before his surgery, we spent an entire day in the emergency room, only to find out that he had a urinary tract infection.  One day on antibiotics, and his symptoms improved.

This week, we experienced the same cause and affect, and expect that a round of antibiotics will make a big difference.  As a precaution, he just had a CT scan and shunt series done at Emory Clinic, and we're expecting the results early next week. (Update:  The enlarged prostate seems to be causing occasional bouts of urinary tract infections.  After 20 days of antibiotics, my dad's symptoms have all improved.  He is seeing his urologist regularly).

He is still sleepy a lot of the time, and his short term memory is very short, but he is much more "present" in conversation, and generally is self-sufficient.  Even with this infection, his symptoms, are far better than before surgery.   

I'm sure that the general health of the patient prior to the shunt surgery affects the results, but for my dad, it was a very good choice.   It's been almost two years, and we're so glad to have him around!

February 25, 2005:

We were right about the urinary tract infection in December.  With antibiotics, the infection was cured and my dad's symptoms improved.  The MRI and shunt series done by Emory in December showed that the ventricles had greatly reduced since surgery.  That's encouraging, and reinforces that, when his symptoms suddenly worsen, it may be something else.

April 9, 2005:

I'm not sure that any of the mental faculties actually improve two years after surgery, but other than the loss of short term memory, my dad seems much more able to read and understand what he's reading. He's more optimistic, and more interested in the world around him.   Most people who know him would say that 100% of his intelligence, personality and dry wit are intact.

His balance is still a little "iffy" but much improved.  I notice that he still bends a little at the waist, but is able to get up and down, and hasn't fallen (that we're aware of).   He's still walking every day, and I know that I couldn't even hope to keep up with him!

He still has prostate problems common with older men, but incontinence has not been an issue except when there is a secondary infection.

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