Public Service Announcement (PSA) How In the World Did I Get Adult Hydrocephalus at Age 70? by: Gail H Fleming, EdD, Retired Associate Professor

Public Service Announcement (PSA)

How In the World Did I Get Adult Hydrocephalus at Age 70? by: Gail H Fleming, EdD, Retired Associate Professor https://www.dhirubhai.net/feed/

The first time I noticed that something was off and not quite right was while I was walking with my friends. Seemingly out of nowhere, the top half of my body began to uncontrollably pitch forward from my waist; my feet began to move with rapid little steps, and my entire body almost fell over forward. I had lost my balance and couldn’t stand up straight while walking. I knew it was an issue with my balance and gait.

I began to wonder if I had Parkinson’s Disease, Muscular Dystrophy, a brain tumor, Lou Gehrig’s Disease, or what?

I went to see my family physician; I told her about these symptoms; and, I asked her if it might be some sort of blockage in my ears causing the imbalance. She checked. “Nope, not the ears, “she said. She ordered a battery of tests (which were scheduled in the distant future - neurologists must be very busy) and wondered if it had something to do with my heart. She suggested that if nothing turned up with the tests, I should wear a heart monitor.

Since the tests were scheduled so far out, I went to see a podiatrist. I wondered if my imbalance was caused by the bunion on my right big toe. (Previously, I had fallen down a set of stairs at my daughter’s house, exacerbating a big bunion on my right big toe.)

I was also researching, and unfortunately, buying different sets of expensive shoes that might correct my gait and balance. (Alas, they didn’t make a difference.)

The podiatrist x-rayed my right foot; he explained the various procedures to eliminate the bunion; and, after much discussion, sturm and drang, I scheduled one of the surgeries that he had suggested.

Following the bunion surgery and recovery time (yes, wearing a boot), I attempted to try to just walk again regularly. The same sort of imbalance and incorrect gait appeared. “Nope, not the bunion,” I thought. (I now had a closet full of size 7 expensive shoes that could not help my imbalance at all!) Sheesh!

Meanwhile, my husband and I took a trip to see my daughter, her husband, and my 3 yr. granddaughter. After we arrived (5 hour drive), my husband, granddaughter and I were sitting and playing at the bottom of a set of stairs on the lower level of the house. (It was the same set of stairs that I had fallen down before with the bunion. Karma? Fate? Guilt?)

This time, I started to walk up the set of stairs to retrieve something on the first floor that I had brought for my granddaughter. After walking up just a few stairs, I fell and hit my forehead on the railing, and I remembered absolutely nothing else until much later.

As I lay on the floor on my back with my eyes closed, making noises from my mouth (death rattle?) my husband began performing CPR. He called to my daughter to dial 911, and as they both began rushing to help me, they hugged each other, thinking that I might be dead, or dying. I had knocked myself out.

The next thing I remember was waking up to the bright lights of the ambulance. The first thing I thought of was my granddaughter. I wondered if whatever had happened to me had scared her. I was reassured by my husband that she was okay. My husband then told me that I had fallen, end over end, down the stairs to the lower level, and he, indeed, thought I was dead.

In the hospital, I was asked by the doctors how I felt before my fall. I said that I didn’t remember anything. I was then subjected to a battery of brain tests and scans, spent the night there, and was released to go home the next day. I felt very dizzy walking; I had suffered a concussion, and, I had a large hematoma on my forehead.

After returning home, I began going to physical therapy, which was scheduled to address my imbalance and unsteadiness while walking. I attended regularly, but it didn’t seem to be making much of a difference in my gait or balance.

After a few weeks, my husband accompanied me to my appointment with the neurologist (finally). As the doctor scanned my brain x-ray, my husband began telling him how active we had always been – hiking, riding bicycles, swimming, traveling, etc. My husband wondered if I would ever be able to engage in those activities again.

The neurologist then said the best thing that he could have said. (At least, that’s what I thought.) He stated: “Sometimes, I look at an x-ray, and I honestly don’t know what is wrong or amiss; I then have to apologize and tell that to the patient.”

In my case, he said: “I can see from the x-ray what is wrong with you and how to treat it.” He then said that I have excess liquid around part of my brain, and this is causing my awkward gait and imbalance. He said that I had a form of adult hydrocephalus, and I would need surgery to insert a shunt into my brain to release the excess fluid. (I had only heard of this condition in newborn babies.)

After many more tests and scans, I underwent the surgery to insert the shunt into my brain which would assist in draining the excess liquid to my abdomen. I had 2 incisions: one in my skull above my right ear (a portion of my hair was shaved there) and one in my lower abdomen to adjust the bottom end of the shunt. After the surgery, I stayed in the hospital for one night.

After returning home from this procedure, (I forgot to mention that adult hydrocephalus causes incontinence. Oy.) I then began to walk a little better, but not as well as I did before this all started.

Several weeks later, my husband and I both attended the post-op appointment with my neurosurgeon. The dressings from the incisions were removed, and he said that everything looked good.

The neurosurgeon asked me if I had any questions. I told him that I only had 2 questions for him: 1. Since my walking had only improved a little, I asked: “Is there any way that I could have the amount of liquid altered?” And: 2.? “If so, might that help?”

The neurosurgeon said: “Yes, to both.” He said that my shunt had been scheduled to release a normal level 4 of liquid, the same amount that he would have placed for others with shunts. I asked if he could change mine to a level 5. He smiled and said: “No, it goes the other way. In order to release more fluid, I would have to change your shunt to a level 3.” he said. I asked if he could try 3.5?” He smiled again and said it’s only scheduled in whole numbers. I suggested that we should “give it a shot” for a level 3.

He then moved to the right side of my body for a few seconds and quickly returned to face me. I asked if I would have to go back into the hospital for surgery in order to change the shunt setting, and he said that he’d already done it! He had set my shunt to a level 3 – with a magnet beside my ear. That fast! (It reminded me of the trick magicians do when they seem to mysteriously pull a coin out of a person’s ear. Wow! What a trick!)

I also learned that this condition is so difficult to diagnose that some people with adult hydrocephalus are told they have dementia and then left to live out their lives with lack of balance when walking, incontinence, and memory loss. That is so very sad, and that is why I wrote this article.

There is hope and help! I am eternally grateful beyond words to my neurologist and neurosurgeon for my diagnosis and treatment. It seems to me like they performed a miracle! You can check out more information by googling the Hydrocephalus Association online.