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SOOOOOOOO GRATEFUL
Written Chuck G., WI

Almost 4 years ago, in 2009, my wife, Dianne, and I took a wonderful trip to the Holy Land to celebrate my retirement. I was 66 years old. Within a week of returning, I was in the emergency room. I had a very bad staph infection on my foot from what appeared to be a small blister. An Infectious Disease Specialist was finally called in. We were relieved to find out it was not MRSA (mersa) - a drug resistant type of staph. I received treatment, and after several days was released. All seemed well!

As time went on, I began to have trouble with my walking - my gait. It wasn't right - according to my wife - but mostly our daughter, Karin. I became more diligent in my exercise program. When I began having "gentle falls", we began looking for other possible reasons - shoes too small, osteoarthritis in the back, or just getting older. Finally, we wondered if I had had a silent stroke. We went to our doctor with our concerns, and he sent us for a MRI.

When we went for our meeting with the Neurologist, he put the MRI disc in the machine - then commented upon viewing the image of my brain "That's the largest ventricles I think I've ever seen". He explained that for some reason the cerebrospinal fluid (CSF) in the ventricles of my brain and spine was not being reabsorbed and discarded. Something had stopped the reabsorption of the fluids. This excess fluid in my brain (Hydrocephalus) was causing a great deal of pressure. Amazingly, I had no headaches - just balance problems.

The Neurologist wanted to do a few tests to diagnose just what was causing this buildup of fluid. He did a spinal tap in the office and took several vials of fluid for testing. It also relieved pressure (of the fluid) in my ventricles. He asked me to walk down the hall. He, and my wife, agreed that my gait had improved. Then he said he wanted to do a high volume spinal tap which would require an overnight stay in the hospital. We realized how serious this was when, while we were still in his office, the doctor called the neurosurgeon on his personal cell phone to make an appointment for me, himself.

Within a week, I was in the hospital, for the high volume Spinal Drain. The results confirmed that I had the condition called Normal Pressure Hydrocephalus (NPH) - sometimes referred to as Acquired Hydrocephalus. He explained that NPH was suspected when there is a change in a person's walking/gait, increasing incontinence and, memory problems or dementia.

The Neurologist recommended that I have an operation to place a permanent shunt in my head with one catheter (tube) in my brain and the other tube emptying the (CSF) fluid into my abdomen. He explained how fortunate I was, because my health was quite good, and thus, could tolerate the surgery with good outcomes.

The alternative - not having the surgery – which could mean taking a very bad fall, or being confined to a wheelchair, or developing dementia/Alzheimer’s within several years - possible being in a nursing home in the near future! I chose the surgery.

When we got home, my wife, Dianne, hit the computer doing research on Normal Pressure Hydrocephalus to understand what we were dealing with - in "layman's terms". We discovered that doctors are just now beginning to diagnose Hydrocephalus in the elderly - especially, doctors under 40 years old. In one article, a study of a number of nursing homes found that 9-14 percent of the residents actually had Hydrocephalus instead of Alzheimer’s. Those that had the surgery implanting a shunt recovered much of their lives.

I have a couple of VERY recent articles on NPH. One is Detective Work: The False Alzheimer’s Diagnosis, from the Wall Street Journal, this past August. It is about a man diagnosed with Parkinson’s and Alzheimer’s. After 13 years of increasing medicines, with no improvement, his daughter took him to a neurologist. It was Normal Pressure Hydrocephalus! He had the surgery, at 70 years old, he is once again matching wits with anyone. The rest of the article goes on to describe many other problems that can mimic Alzheimer’s, but are, in fact, not Alzheimer’s.

Another story featured on ABC News in mid-February. (Rock Star nearly Loses Career with Curable Dementia.) After surgery for NPH in 2011, he is now back on tour. He said "I am like a new man, almost overnight. For almost 5 years, I couldn’t even pick up a guitar". This article goes on to tell a second story of a woman, diagnosed with Alzheimer’s, who finally got a second opinion after 6 years. Now, she is back to playing piano at her church - from memory.

For those who are computer savvy, from MedlinePlus – “Trusted Health Information for you on the particulars of Normal Pressure Hydrocephalus”.

Specialists are not sure yet just what might cause Hydrocephalus among the elderly. They do know that you are more likely to get NPH (or another form of hydrocephalus) if you have had:

  • Bleeding from a blood vessel or a brain aneurysm
  • Certain head injuries
  • Meningitis or similar infections
  • Surgery on the brain

Considering the very bad staph I developed upon our return (4 years previous) from Israel, my doctors wondered if that is what caused the fluid not to be reabsorbed.

Understand that I am - by no means- an expert on Normal Pressure Hydrocephalus, or Alzheimer’s, or Dementia. I'm just a man that is soooooooo grateful that this condition was diagnosed so quickly. We feel so blessed as we had never even heard of the condition. We thought that only babies were born with Hydrocephalus. We are so excited to be able to spread the word about getting a second opinion if you, or a loved one, has been diagnosed with Alzheimer’s, Parkinson's, or Dementia.

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