By Trish Bogucki
I have read several entries on the HA blog from family members of NPH patients who are debating the pros and cons of shunt surgery for their loved ones. I made the decision to have shunt surgery two years ago and am very glad I did. I want to share the decision process and my before and after stories for anyone who may be looking for encouragement to have surgery.
I had increasing trouble walking for more than a year before I was diagnosed with NPH. It wasn’t until I fell a few times that my family and friends convinced me to get help. After an MRI it was clear that I had hydrocephalus, but I was dead set against brain surgery. At age 66 I was fortunate enough never to have had any surgery and was not willing to even discuss it. My neurologist offered a lumbar puncture as a possible alternative, and I took it. That night and the next morning my balance and walking were much improved – and it felt great. But by the following evening the benefits had disappeared, and I was back to my constant dizziness and having to use a cane or hold on to the walls to walk. My brief taste of normalcy was so tantalizing – I wanted to go back there and stay! When I told the neurologist that I had almost a day of normal walking and then the symptoms came back, he said “Congratulations – you are a candidate for shunt surgery.” My first thought was “Oh no.”
So I sought a second opinion. The second doctor’s opinion was that my symptoms were completely consistent with normal pressure hydrocephalus and that the only effective treatment is shunt surgery. He went on to say that every competent neurosurgeon can perform the shunt implantation. When I showed the second opinion to my sister-in-law who is a physician herself, her response was: “What are you waiting for?”
My neurologist referred me to a neurosurgeon, and I remember asking him many of the questions found elsewhere on this site. He was very open to them and did not take offense when I asked him how many shunt surgeries he had done. He told me that he started doing them in medical school and even though he is still quite young that meant that he had more than a dozen years of experience.
So I finally decided to go through with it. I did read about the relatively high possibility of medical and surgical complications, and there was a surgical complication that led to a hematoma in my abdomen. I also had a bad reaction to the anesthesia and that gave me a few extra days in the hospital. But I was discharged three days after surgery, and within two weeks all of the issues had been resolved and I had been cleared to drive and to go back to work. No one could tell that I had had brain surgery (but one colleague asked if I had had a facelift!). The best part was when my surgeon started to open the shunt’s valve using a magnetic adjustment device and I started to see some improvement in my symptoms. Another good step was when he recommended that I go to physical therapy and try a new treadmill with NASA technology. He also referred me to a great cognitive therapist to work on my memory issues. (Please read my blog entries on PT tips and Cognitive Therapy for NPH patients if you want details on PT or CT.)
Now it’s more than two years later, and I am very glad that I had shunt surgery. I can walk normally and even do my favorite Advanced Step Class at the gym. My memory and bladder control have improved greatly, and I can swim again. I go to the gym six or seven times a week and work on cardio, strength and balance, and I have a personal trainer once a week to keep me challenged. Thanks to the surgery and subsequent therapy I have my life and my independence back!
Shunt surgery was definitely a very scary proposition, but when I was told it was the only effective treatment for this debilitating condition I had to do it. I had lots of support from my ever-patient husband, my wonderful family and friends, my employer and a terrific nurse from our health insurance provider and of course my doctors, nurses and therapists.
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Trish Bogucki is a semi-retired Human Resources systems director and data privacy professional at a large accounting firm. She and her husband live in northern New Jersey where they enjoy life with each other, some wonderful friends and two spoiled cats.
She has already submitted two NPH blogs to HA that were so well received and generated so much discussion that she has agreed to do a Monthly NPH Blog Series for HA.
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