How I decided to have shunt surgery

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Trish in step class
By Trish Bogucki

Guest Blogger

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.

 

NEW BLOG SERIES

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.

Click here to read other blogs written by Trish. READ MORE

9 Comments for : How I decided to have shunt surgery
    • Jerald Bell
    • October 18, 2018
    Reply

    Hi Trish. Nobody wants to recommend a neurosurgeon outside of town, and i’m willing to fly anywhere in the country to have shunt surgery. I have some congenital brain abnormalities that put me at higher risk for epidural hemorrhage and death from the surgery. Would you be comfortable letting me know who did your surgery, and/or others that were recommended? Anybody else is welcome to comment as well, if they would like.

    • Betty
    • July 30, 2018
    Reply

    Trying to weigh pro and con for brain shunt. Absolutely scares me if shunt doesn’t work, but how rapidly my gait becoming worse and memory deteriorating, plus holding objects in right hand, has put me in a more receptive frame of mind for shunt. Opinions, please!
    Betty – 83 yes old

    • Reply

      Hi Betty: I was told that shunt surgery was the only long-term treatment for NPH. I needed a lot of therapy after the surgery but now I am leading a normal life so am very glad I went ahead with the surgery. I have been told that the therapy alone would not have produced a lasting result – that the shunt was necessary.

    • Reply

      One more thought, Betty – what really changed my mind was the lumbar puncture. It’s an outpatient procedure and didn’t hurt but it gave temporary relief of my symptoms and it reminded me of what life used to be like. BTW I have been told that there is no age limit for shunt surgery – the decision is based on each person’s condition and the anticipated benefit vs. risk

    • Donald Struck
    • March 22, 2018
    Reply

    March 21, 2018. Had surgery to drain blood from subdural hematoma. Cavity that had formed shrunk to just a small portion within 12hrs. after surgery to what it was by looking at pictures of MRI. Walking is still going to be difficult from early indications but better that before surgery. Will be getting physical therapy in hospital and continue as outpatient. Have to wait to adjust valve. Hoping for the best and staying positive. Have good support from friends and family

    • Trish Bogucki
    • March 9, 2018
    Reply

    Hi Don: I too am an active older person and am sorry to read you were having issues with your shunt. I have been told that MRIs can affect shunt settings so my doctors have sent me only for CT scans since I got my shunt. I don’t know about the possible impact of Blue Tooth devices but I did speak with another NPH patient who suspects his shunt settings were affected by a room full of people using their devices on a Wifi. It’s certainly something to ask your doctor about. Finally, my neurosurgeon expressed concern about overdrying my brain so he did a series of adjustments to get me to my present setting. I’m on the max opening but still have some fluid so I am trying to deal with the effects with daily exercise and I just started another round of PT to work on my balance. How are you doing now?

    • Don Struck
    • February 23, 2018
    Reply

    Two weeks after shunt surgery and another MRI it was determined the shunt had over drained and the ventricles had deceased in size too much. This allowed fluid to build up under the skull and outside the brain. Valve was adjusted and I go back in one month for another MRI. Walking still a difficult problem. Try to walk outdoors and get the first stride out there. In close quarters like around the house is a problem.

    • Donald Struck
    • February 15, 2018
    Reply

    Will a MRI alter the settings?Will using Blue tooth wireless headphones that are paired to a smart phone alter the settings. Am headed to MRI and appt. with surgeon this morning. 2-15-2018

    • Donald Struck
    • February 14, 2018
    Reply

    Trish:. Read it twice and had my wife read it. Very encouraging!! Had shunt surgery 1-8-2018. Not doing so well. Dificulty walking. Going back to surgeon 2-15-2018 for another MRI and follow-up appt. with surgeon. Hopefully can adjust valve and get back on track. Have bicycled and gone to gym for 35 years. Active older person.

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