looking back…moving forward: six years after my shunt was installed

i am now 73 years old. on april 24, 2007, at age 67, i had a programmable ventricular peritoneal (vp) shunt inserted in my brain at st. michael’s hospital, toronto , because i had adult onset idiopathic normal pressure hydrocephalus , also known as inph. the diagnosis took at least 2 years to make and involved several medical specialists, some of whom declared my symptoms psychosomatic. others felt i had hydrocephalus, but that i should wait to be shunted because of the dangers of the operation and the risk that the outcome would not result in significant improvement. my earliest symptoms had been a sensation like that of walking on gum, and progressed to an inability to walk without a walker, uncontrolled urination, difficulty concentrating and understanding complex ideas, and trouble remembering things.

my husband and i wanted to find a specialist who had more clinical experience with adult hydrocephalus. we located a neurosurgeon at the montreal neurological institute who had been seeing seven or eight adults a year and went for a consultation. he thought i likely had inph, but also thought i should wait before undergoing shunting. in the meantime i had been seen by two different neurologists who specialized in movement disorders. they were of the opinion that i did not have parkinsonism, though one also told me that my symptoms likely were psychosomatic. as i worsened, my toronto neurosurgeon, who had encouraged the examination by the movement disorder neurologists, told me he would operate if i was prepared to accept the risks.

along the way, i had joined the american-based hydrocephalus association (ha) and i decided to go to their annual conference in the spring of 2006, held in baltimore, maryland, in order to learn more about my condition. i went with my younger daughter (my husband could not come) and a member of the spina bifida and hydrocephalus association of ontario‘s (sb&h) adult support group. my husband prepared a dossier of all my tests including a cd-rom with my ct scan and an mri. the idea was that our daughter would take the file and scans to the office of dr. michael williams , then co-director of the the hydrocephalus center at johns hopkins university hospital and now medical director of the sandra and malcolm berman brain & spine institute of lifebridge health , and leave it for him to read. from reading some of the medical literature on nph we knew that dr. williams had a lot of experience and was involved in significant research on hydrocephalus. we planned to ask him for a consultation. then it seemed fate took a hand.

i was at the conference, walking from one session to another, when i lost control of my walker and walked into a wall. this attracted the attention of one of the speakers, dr. michael williams himself, who was a member of the ha’s medical advisory board .

but i could and i did. i felt like one of the patients in the movie awakenings , in which people who had been “frozen” in time and space due to their infection during the 1918 influenza pandemic became functional (for a time) after being given el dopa. i wondered whether a similar time-limited result might be my fate. so far it hasn’t been.

i believe those tests saved my life. the results gave me confidence to have the surgery in toronto (which was fully covered by the ontario health insurance plan), despite its risks. drs. williams and wilson provided a full report to my new toronto neurosurgeon, dr. michael cusimano , whom i selected after dr. williams had asked a very distinguished canadian pediatric neurosurgeon he knew ( dr. james drake , head of neurosurgery at toronto’s sick children’s hospital ) for a recommendation of someone in toronto who had a “special interest” in adult hydrocephalus. and thankfully dr. cusimano accepted me as his patient.

now that i am at the six year post-op mark, i feel in many ways like my old self but it has taken a lot of hard work. after my first neurologist looked at my initial ct scan ten years ago and said i had hydrocephalus, i quickly found the hydrocephalus association and connected with the wonderful people there. they sent me literature about nph and information on their activities, including their national conference . the baltimore conference, aside from providing me with valuable information, linked me to dr. michael williams and thus started me down a road that confirmed my diagnosis and gave me the confidence to undergo shunt surgery in toronto with dr. cusimano. the key to my success was ha, with which i stay connected and continue to refer people to, in addition to the important work being done here by the spina bifida and hydrocephalus association of ontario, the largest such organization in canada. we have but a tenth the population of the united states and so many fewer sufferers of all forms of hydrocephalus, thus both organizations are very significant to those of us with hydrocephalus in canada. my life has been impacted positively by ha and i hope and trust that the ha will be successful in raising the profile of hydrocephalus in the united states through its advocacy efforts, and also to continue to respond to the needs of patients and their families with literature, conferences and personal contact. these efforts surely will result in much greater awareness of hydrocephalus in both countries and will contribute to alleviating the hardships of those who suffer from it at all age levels.