Looking Back…Moving Forward: Six Years After My Shunt Was Installed

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Gilda at Vardi weddingBy Gilda Katz, MSW (retired)

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.
Over a couple of years my symptoms gradually worsened and even after taking medication for my urinary incontinence, I soon had to wear adult diapers.

My husband is fond of saying: “During the Jewish High Holy days in September, 2006 before Gilda’s shunt was inserted, I had to take her to our synagogue, which was less than a third of a mile from our house, in a wheelchair. During the same holiday in 2007, about six months after the shunt was inserted, she walked there and back each day for the Jewish New Year, and three times on the Day of Atonement.” However, my memory, concentration and ability to figure out things were still weak and I was still urinating frequently and sometimes without much control.

Life Pre-Shunt

I would like to share a little of what my life was like before my final decision to get shunted. My family doctor sent me from one specialist to another and I underwent many different tests to try and diagnose the cause of my early symptoms. All were negative. Finally, he sent me to a neurologist who could not detect anything amiss during his careful neuro-physical exam. It was only resolved after an unrelated visit to my endocrinologist, who had a keen diagnostic sense, and in response to my sad story carefully looked at my gait and general condition. He saw evidence of neurological problems and referred me back to the neurologist. By then a few months had passed and the neurologist also picked up the signs and sent me for a CT scan.

When the results of the scan came back, the neurologist said he found it difficult to believe but the results showed enlarged ventricles and the report from the radiologist said it seemed that I had hydrocephalus. The neurologist in turn referred me to a neurosurgeon saying, “Those guys know a lot more about this than we do.”

Neurosurgeon: “I looked at your CT scan results but your symptoms are not very pronounced. Come back and see me when you are in a wheel chair, wearing diapers and not sitting there taking notes.”

Indeed, I gradually got worse and my neurologist scheduled a cerebral spinal fluid (CSF) flow study, where a radio-opaque material was injected into my spine in the lumbar area and x-rays were taken every two hours to note the CSF  movement. After several images, the final x-rays were taken the next day. The radiologist’s report noted I appeared to have communicating hydrocephalus. I returned to the neurosurgeon.

Neurosurgeon: “Yes, but you are not ready for surgery yet. The operation has significant risks and you may not benefit from the shunting.”

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.

Dr. Williams: “If you like, I will see you for a consultation in a month regarding your diagnosis and potential for benefiting from a shunt operation.”

My husband and I were quick to seize the opportunity. It was then about 5 years since my very first symptoms and, as I’ve said, my condition was deteriorating. Dr. Williams gave me the most intensive neurological physical examination I had ever had, after which he said he had no doubt whatsoever that I was suffering from iNPH. The question remaining, he noted, was whether I would benefit significantly from being shunted. “Because we’ve had a cancellation at the clinic I can see you in two months for a continual lumbar drainage test, under special conditions which require you to be in a neurosurgical bed for three nights.” Again we jumped at the chance, avoiding a much longer wait.

This test certainly was known in Ontario, but rarely done because there weren’t enough scarce neurosurgical beds to reserve one ‘merely’ for testing. I have since learned that now it is done in London, Ontario. This test must be carried out very carefully, as it involves continual drainage of cerebral spinal fluid via a lumbar catheter, which stays in place for three days. There is a potential for infection, which could then lead to encephalitis and worse.  The test requires careful monitoring, avoiding over-drainage; repeated testing of one’s walking ability and daily cognitive testing are part of the regimen.

After the first full day of drainage, Dr. Williams took me out into the hallway outside my room. Pointing to my husband at the end of the corridor, and with a twinkle in his eye and a proud look on his face (or so I interpreted it), Dr. Williams said to me, “Walk over to your husband and give him a kiss.”

“Walk without a walker?” I thought. “I can’t!”

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.

The testing at Hopkins indicated that I had an 85 to 90% chance of significant improvement with a shunt. This was an enormously important factor in my decision to have a shunt. I had been told repeatedly in Toronto that about twenty percent of patients suffer inter-cranial bleeding and possible strokes while on the operating table during the shunting procedure, and something like five percent actually die; while statistically only about half of those shunted experience significant improvement in their symptoms. We also knew from the literature that waiting too long reduces functional recovery. This was the dilemma I faced without being given much hope from most of the doctors, except for Dr. Williams and his colleague, Dr. Wilson.

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.

Gilda in Marmaris, Turkey

Gilda in Marmaris, Turkey

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.

Overall, this has been a journey covering some twelve years and I can say with complete conviction that each of us who suffers from this still incompletely understood condition has to have hope, help and enough self-confidence to make the journey yield as much as we can under the circumstances we each find ourselves facing. I hope my own story gives you some ideas and the conviction to move forward. I think writing about my post-op life will help others take some of the same steps.

Join Gilda for the continuation of her blog where she shares her post-operative rehabilitation, ideas for accessing community services and self-help activities, and the importance of involvement and finding the proper support.

27 Comments for : Looking Back…Moving Forward: Six Years After My Shunt Was Installed
    • Steven Isaac
    • August 6, 2019
    Reply

    Hi, I found your story very moving and my father has gone through exactly the same issues that you found. He has improved since having a shunt fitted however he still cannot balance very well. Do you have issues with balance?

    • Brenda Foucault
    • May 7, 2019
    Reply

    My husband just had a VP shunt place May2, 2019 in Indianapolis by
    Dr Payner, neurosurgeon. It has taken prayer and I think an act by God for him to get the MRI that showed his diagnosis; also a neurologist that said he needed a neurosurgeon right away. He had an appt for May 14th; he said no that os too long. You are an accident waiting to happen. My husband has an acoustic neuroma that I think caused the problem.
    .

    • geoff Webber
    • April 19, 2019
    Reply

    my 82 year old mum has had a shunt implant I am hoping that mum even at the age she is can still have a few more quality years of life

    • Karen Hen
    • April 9, 2019
    Reply

    Your story was so amazing and gives me hope for my husband who was diagnosed two years ago. We have a referral to Dr. Cusimano but have not heard back yet. It has been over a month. Some days he can walk better than others but that is becoming more and more difficult. He has gone through physiotherapy and our neurologist didn’t feel he was a good candidate for shunt placement. I have read a lot about endoscopic third ventriculostomy. Have you any thoughts on that. I work full time and want to do the best I can for him. Right now he is focused on leading the Seder at my workplace which is givin him a sense of purpose. I would love to hear from you.

    • Helen Galko
    • March 29, 2019
    Reply

    I too have been shunted recently. I walk better but still have incontinence . Can my shunt be plugged? A shuntogram has been suggested what are the risks?

    • Kasie Warrington
    • March 20, 2019
    Reply

    Zelda, that’s how felt after my shunt surgery. Beforehand I felt like I was someone else. In a fog, confused, and sickly. After the surgery, I was me again! I had a wonderful neurosurgery team and hope to keep them for awhile. Just sucks I was diagnosed with Hydrocephalus at 31 years of age. But better now than being over 80 and losing my mind which unfortunately happened to my grandmother. Mine was hereditary but it didn’t appear until end of 2018.

  1. Reply

    Joe
    I had migraines all day every day. My balance was bad with vertigo most of the time. I would take a ride in my car and forget where I was going. Had to use gps to get back home. I couldnt remember where i put things every day. I would get up to do something and forget why i got up. Diagnosed with hydracephallus by a brain surgeon. CT scan showed enlarved ventricles. The put die in spine to see if it would dissipate over 3 days. Doing one ct scan each day. By the third day none of the dye dissipated. It should of all been gone. Your body produces new spinal fluid every day and dissipates same amount but not for me. I had my brain shunt installed jun 2018. Ever since my memory has improved and I can drive long distances now. I do still have some vertigo issues. Sometimes for 3 or 4 days but not as much. For some reason I keep getting migraines. The neurologist gave me some meds that were working for about two months but not as well any more. Sometimes ibeprophine and excedrine migraine work. I recommend the shunt if you want to get better. Otherwise you will lose all uour memory witth the pressre in the ventricels damagiing your brain. You wont bex100 percent but maybe 80 perc3nt better.

    • Beth Roughley
    • March 5, 2019
    Reply

    I had shunt surgery 5 weeks ago and my memory is returning along with control of my urine. No headache either. Still have stitches and tinderness but hopefully all this will improve. Thankful for a wonderful surgeon.

  2. Reply

    Hello, thank you for your brave story. I have seen over seven neurologists who have told me to seek counseling for my symptoms even though I do have enlarged ventricles and had a spinal tap and my symptoms reversed for a day. I did meet with an additional neurosurgeon who told me he wouldn’t operate on me because I’m too old – 63. I don’t know where to turn.

    • Carol Cowen
    • December 29, 2018
    Reply

    My husband had a shunt put in a few days ago Dec 27 2018. The rehab at this facility will not accept him back after this surgery. He was in rehab for a month until finally a neuro interventionalist saw him and they diagnosed hydrocephalus. He is in med surg and they refuse to take him back to rehab. It probably has to do with Medicare and payment. I am praying to find him a rehab to help him get back on his feet so that he could go home. If he is able to walk a little he could go home and wouldn’t have to go to a care facility that we can’t afford. He is 67 years old and did have a brain bleed 3 years ago and brain surgery. He came back only to find a few years later that he has had hydrocephalus. Hoping he can get the help that he needs

    • Katherine Larson
    • December 13, 2018
    Reply

    I’ve had a shunt since 2005 was 13. I had an astrocytoma the size of a golfball with a tail that wove into my cervical spine. I really want to have my shunt removed because I don’t like the idea of it deteriorating in my body over years. I’ve been seeing a lot about the silicon in breast implants making people sick and I often wonder if the silicone tube in my body is also making me sick. I’m always tired, lazy, forgetful, sometimes my joints hurt, I forget sometimes or I’m slow reading or counting. That said it could just be because I had a tumor. I don’t know if the weakness in my right side is due to the tumor or the shunt in my brain. I guess I never knew how dangerous a shunt really was to put in but in my case it was shunt or death. By the time they realized I had a tumor I had like a month to live. From what I have read, once the shunt is in it really shouldn’t be taken out. I just want to be free from being paranoid that the same thing that helped me live is also hurting me.

  3. Reply

    What do I do my new born has been diagnosed with hydrocephalus and head keeps swollen but the doctors cant do anything about it till my appointment date which is very far. And the baby keeps suffering.

      • Alex Yong
      • March 24, 2019
      Reply

      Esther, how is your baby doing? If the condition continues to get worse it’s critical to get the fluid released somehow. Our baby was diagnosed at 4 weeks after birth and got shunted after another 2 weeks. It probably saved him from a lot more problems and issues. We are observing daily still. Hope things have worked out for you and the baby.

    • Helen Finn
    • July 10, 2018
    Reply

    My husband was diagnosed about 3 years ago, the local hospital did a lumber puncher in October 2016. He has been using a wheelchair since then and his mobility is very poor. He is sometimes inconvenient, Tomorrow he is going to a different hospital for a lumber puncher and then possibly a stent fitted. X

      • Janice Allary
      • July 22, 2018
      Reply

      I had several head injuries throughout my early life…ie: teen years and early 20’s. I excelled in my job as a Medical Transcriptionist for many years after – but when I turned 51, everything changed. I became incontinent, unsteady in my walking and unable to retain recent knowledge or memory. I received a VP shunt at the age of 59 which alleviated most of the problems, although I still suffer from short term memory loss. Thankfully, the incontinence has pretty much stopped, and the ability to walk normally has improved immensely. I am most grateful to my doctors – Dr. R. Vosoughi (Neurologist) and Dr. Beiko (Neurosurgeon) for the chance that they have given me towards a normal life.

        • Carol Cowen
        • December 29, 2018
        Reply

        My husband had a shunt placed two days ago. Apparently hydrocephalus was missed in looking at his scans until last week. He has lost his memory, can’t think walk and has the urge to pee all the time. I am really so hopeful that he may get some of his life back. I am fighting with rehabs to get him a chance to improve and get back on his feet. If he can just a little, he could come home. Otherwise it will cost so much to find care for him. He has had this for 2 and half years and got so bad

    • Anita Guttenberger
    • June 29, 2018
    Reply

    My husband , 83 years old, has been diagnosed with hydrocephalus. He also had a stroke a year ago and has essential tremor. His stroke was handled quickly and with good results, but he does have right side stiffness, mostly in the leg. My concern is his age, ability to identify if he would be having a problem with a shunt, etc. I am reluctant to move forward with this. Any thoughts?

  4. Reply

    My husband had the surgery 5 months ago. Progress was minimal until about a month ago when the neurosurgeon dialed down the shunt to decrease the amount of fluid being drained off the brain. Since then, his thinking is much clearer, memory is better, but regaining a steady gait seems to be slow in coming.

    • Joana Tan
    • June 6, 2018
    Reply

    My daughter has hydrocephalus, being treated with diamox. She is too afraid of having a VP Shunt. She’s 21 this year. Could someone assure her that it is not as frightening as it seems. She still has unsteady gait with diamox.

      • Andrew Baldwin
      • June 25, 2018
      Reply

      Joana:I took Sudafed and Diamox while attempting to diagnose my condition which took over 2.5 years. Once the MRIs with enlarged ventricles and the radiologist suggested AO-NPH it was clear that I needed to act as I had gait and balance issues, urgency and there was mild cognitive issues which is what non of was want to acknowledge. I found the UCLA program and went through the five days of lumbar drain trails which confirmed I had a high degree of chance for 90% improvement. I scheduled a VPN shunt for 12-16 and have been progressive accordingly. There is a site on the UCLA Geffen medical school page but I would urge her not to hesitate if it is NPH as it is not going to dramatically improve given the pathetic lack of research. Dr. Ho was my neurologist and Dr. Kim the neurosurgeon. They have two teams and were working out of UCLA Santa Monica hospital at the time. My number is 909-224-9096 cell if talking helps. It is scary. Yes you could die or or etc. but several weeks of recovery and months of PT to relearn correct walking was my choice vs. a wheelchair and dementia. But she needs to properly diagnosed and accepted into the program ASAP. AB🆎

    • Shirley Ashley
    • April 29, 2018
    Reply

    I had a Vp shunt 2 weeks ago. My walking is greatly improved and I’m surprised that I now have the energy to walk farther and be on my feet longer. I find my eyes and mine don’t move as fast as my body so afraid of falling and use my walker to slow me down.

  5. Reply

    I HAD A SHUNT ON MY BRAIN 6 MONTHS AGO. WAS WONDERING, HAD LOTS OF HEADACHES AND COULD NOT HOLD ANYTHING IN MY STOMACH I AM BETTER HE PUT THE SHUNT ON 100 I WENT TO MY NEUROLOGIST AND HE ADJUSTED AT 80, I AM LOOSING BALANCE AND I TEACH YOGA, MY WALKING IS A LOT BETTER AND HEADACHES SOMETIMES BUT TREATABLE, I MIGHT GO BACK TO SET IT 100 OR MORE.
    WHAT IS THE DIFFERENCE OF 100 OR MORE

    • Reply

      I had mine placed 3 month ago and my pressure is at 125, since then Ive been suffering of headaches as well specially when I move around.
      Not too happy, still not with so much energy. Confused of what to do next. My short term memory is better but not 100%. I feel that somedays Im doing better than other days. any suggestions?

    • Sandra M Winston
    • September 2, 2017
    Reply

    This information from Gilda was very helpful to me as I traveled a similar path as she did. My VP shunt was implanted April 2017.

    I believe my first gait problems occurred as early as in September 1997; the bladder issues later the following year; the memory (to my memory) started 2013 along with not being able to do my check book not to mention having to do my parents as well. I felt a lot better right after surgery; but the pressure has been adjusted several times since with the last one 3 months ago. I am having issues I will discuss with neurosurgeon such as my stomach’s distention. Thanks

    • Althia Warner
    • May 14, 2017
    Reply

    I hd surgery at Johns Hopkins 1996 after being diagnosed wrongly for years I am now 62 yrs old I thank God first and the Hopkins Neuro Team for giving me back my life It was rough for about a year however the only side effect I have is anxiety fear of being in any type of accident that would injure my head

    • carol crosson
    • January 25, 2017
    Reply

    Husband diagnosed an hour ago, feeling shocked,not living the prognosis.Will probably.contact John Hopkins and the Association.Tremendously grateful for your story.Shalom Carol

      • ZELDA LUBART
      • September 22, 2018
      Reply

      I had a shunt put in a month ago, I am 76 years young. If you had cataract surgery and remember how it felt to see colors clearly again, that’s what shunt surgery did for my mind.I no longer have pee dripping down my leg, walk without dragging my foot,and according to my kids, I am back. I am so happy I had this done.

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