What I Know Now: Tips to Prepare for Shunt Surgery

Written By Frank Salamone, L.C.S.W.

You always see these interviews with aging celebrities in magazines like AARP Magazine and PEOPLE titled “What I Know Now,” so I decided to adapt that byline for NPH and pass along what I learned from my most recent surgery experience, in the hope that it may help you and your family.

I had shunt revision surgery April 26, 2022. It was not “my first rodeo,” so I was more familiar as to how it all goes down.

Let’s start 2 weeks before surgery. Here’s what I did to prepare and most of it helped tremendously.

1. I went shopping for any “heavy” items that I knew I wouldn’t be able to lift after surgery. I stocked up on water in bulk, soups, and non-perishable goods. Things that would make my life in recovery easier.
2. I went to my grocery store and stocked up on individual food items and ready made meals so that I would come home to a full cupboard and refrigerator/freezer, especially since I live alone. Anything to prepare easy meals. Yogurts, cottage cheese, sliced cheese, eggs, healthy frozen meals, crackers and spreads, bread, pasta, sauce, etc.
3. I made it clear to my surgeon that I wanted to be discharged to a skilled nursing facility this time. For my first surgery, I was discharged home, and it was a BIG MISTAKE. I repeated this request throughout my hospital stay — to every nurse, P.A., O.T. and P.T. — to put the wheels in motion.
4. I packed a bag for rehab (and the hospital) to be prepared – comfortable lounge wear-style clothing, toiletries, snack bars and good ear plugs (very important). Hospitals and nursing homes are noisy.
5. I printed out the wonderful support comments I received from my Facebook groups, and I read them before and after surgery.

Now for your hospital stay.

1. As for the hospital, be prepared to be awakened every few hours for vitals and pain meds, and to answer some questions: “What year is it?”, “Where are you?”, Why are you in the hospital?”, “Who is the President?,”
2. Be prepared to advocate for which of your medications you want and which ones you don’t. As for me, I opted out of any of my medications that might interfere with sleep, since I knew I would be sleeping a lot after surgery. I stopped the opiates at day 3, since I decided that the side effects were worse than the pain. But definitely stay on the pain meds if you need them; this was a personal decision, not a recommendation.
3. Be cooperative and compliant with what is asked of you. Nurses are busy, so a little charm and gratitude goes a long way to help them care for you. And don’t be so quick to “ace” the P.T. and O.T. exercises, because that will hamper their ability to recommend a discharge to skilled nursing. As one seasoned Occupational Therapist advised me: “Whatever you do, don’t say ‘I feel great!’” Wise advice.
4. One P.A. wisely told me: “Manage your expectations.” Yes, the surgery will, hopefully, help you. But you and I still have NPH, and some symptoms will improve more than others, and this will vary from person to person. The shunt is not a “magic cure.” So, practice gratitude for whatever improvement you experience. And remember that recovery from shunt surgery is likely a 6 month-1 year process. So, patience, patience. And I smile as I write that, since I have ADHD.

As I had hoped, after a four-day hospital stay, I was discharged to a skilled nursing facility, where I stayed for eight days. They made my meals and ordered and dispensed my medications. I had O.T. and P.T. every day, I engaged with activities, and I even played BINGO a few times.

I urge you to follow this plan. Medicare covers the nursing home at 100%.  You may THINK that you want to be discharged home, but I promise you, both as a patient (and as a retired social worker of 30 years), this would be a BIG mistake (as I learned, regrettably, in 2019). And once you are discharged HOME, you give up any possibility of a skilled nursing facility. You must be discharged directly from your hospitalization and transported from the hospital with your records and discharge plan. Then your family can visit you, and not have to assume the caregiver role right away.

While you are in your rehab, work with the facility case manager to arrange a referral for Medicare home health services. There was a plan in place when I got home. For four weeks I had a steady stream of nurses, O.T.s, P.T.s, and a social worker, all working with me to help me transition and keep me active. I know that without that, I would have just retreated to my bed, withdrawn, isolated, and slept. Since I live alone, it was helpful to have extra “eyes” on my early recovery, as well as the “cheerleading” and encouragement. I “graduated” from home health care after 4 weeks. It was agreed that I was doing very well.

And don’t be surprised at the reactions of family and friends when they hear you had “brain surgery!” Lots of wide eyes and amazement. I received so much support, and I am very grateful to my numerous Facebook groups, to my monthly Zoom support groups from the Hydrocephalus Association and, of course, from my family and friends.

So, that’s my story and I hope it helps some of you that are about to have surgery, whether for the first time or a revision. These are things no one can tell you who hasn’t walked our walk. Some of my symptoms are improving and other symptoms are slower to improve. I am getting my shunt valve adjusted soon to a different setting, in the hope that increasing the flow of CSF will help my recovery, which has stalled recently. But I am grateful for whatever improvement I experience, even if it isn’t perfect.

I wish you the best with your surgery.