Wacky, Wet, and Wobbly - A Story of Undiagnosed Hydrocephalus

by Jeanne DeBold
(Southwick, Massachusetts)

I've fallen again! Why can't I get up off the floor? How can I be so weak and clumsy??

I had asked myself those questions many times over the first fifty seven years of my lifetime.

My life has not been an easy one. Even as a little girl, I knew that there was something seriously wrong with me.

If I tried to lie in a prone position, my vision would cloud over and I would nearly pass out. In early childhood, my pediatrician told me, "If lying on your stomach makes you feel ill, then don't lie on your stomach!"

For as long as I could remember, I had suffered from debilitating and seemingly unrelated symptoms. I soon learned not to mention these problems to doctors as they would look at me as if I was mentally unstable.

My life had been fraught with numerous bad falls. If the sidewalk was uneven, I would trip and sprawl to the pavement. My left shoulder and right knee were extremely disabled and painful as a result of these constant falls.

I required countless surgeries to try to correct the damage done to my joints. I began to suffer from urinary urgency and incontinence in my forties and incontinence of stool in my fifties.

My balance became increasingly impaired. While going up some steps, I caught my toe and sprawled face down. A few weeks later, I fell flat out again, scraping the side of my face while my glasses flew off.

And, of course, that beleaguered right knee was ripped to shreds again. I began crying and screamed, what is wrong with me? Normal people don't fall like I do! I must have Parkinson's disease or multiple sclerosis!! This isn't normal!

One night, my legs simply gave out from under me. I crumpled to the floor and was unable to get up. I became incontinent, and once again, started to cry.

I hated it when I cried. It showed how weak and helpless I was.

This was the lowest point of my life. I felt that I had just experienced the depths of hell. All I wanted to do was crawl into bed and stay there for the rest of my life, curled into a fetal ball of worthless flesh.

Certainly I would be doomed to spend the rest of my life confined to a wheelchair. I felt like I was a hundred years old. I begged God to take me and put an end to my misery.

I felt that I was just a drain on society. I didn't have the right to use up the oxygen on this planet.

God does work in mysterious ways. He led me to a chiropractor who put me on the road to a dramatic recovery. Although I had had numerous surgeries on my right knee, I was still in a great deal of pain, causing me to rely on a cane.

'Doc' strengthened my knee to the point where I no longer have any pain and I was able to throw away my cane!
brain mri
Brain MRI

Even more importantly, Doc insisted that I have an MRI of my brain to try to find the reason for my balance issues. Although I balked at first (after all, I was almost 60 years old by then, why bother?), the MRI showed marked hydrocephalus (water on the brain).

I was referred to Dr. Dennis Oh, neurosurgeon extraordinaire at Baystate Medical Center (Springfield, Massachusetts). He could not believe that I had gotten through this much of my life with so much fluid on the brain. It was such a relief to have those lifelong disabilities finally explained!

There are ducts on both sides of the brain that drain cerebrospinal fluid out of the skull. The duct on the left side of my skull functioned normally. However, the duct on the right side would only allow the fluid to drain intermittently.

When the duct was not draining properly, I would experience all of those troubling symptoms which included memory loss, apathy, withdrawal, difficulty getting up from a chair, changes in behavior or mood, unsteadiness, leg weakness, sudden falls, shuffling steps, and urinary urgency and incontinence.

I had a cerebral-abdominal shunt inserted into my skull to slowly decrease the amount of cerebrospinal fluid in my brain. The effects of the surgery were dramatic and life altering and at the age of 58, I finally felt normal!

Although my hydrocephalus was from birth, the same symptoms can present themselves in later life. The ducts that draw cerebrospinal fluid away from the brain can become clogged simply due to the aging process.

Even though a person may not have had a previous problem, hydrocephalus can present itself due to advanced age. Some older people who have memory problems and poor balance are being misdiagnosed as having dementia or Parkinson's disease.

Medical research has shown that some of these people are actually suffering from adult-onset hydrocephalus which can be easily diagnosed with an MRI.

They could once again lead productive lives after the insertion of a shunt. However, many doctors do not think of this condition in adults but rather only in children.

I believe there is a reason that God had given me this lifelong problem that was finally treated successfully. I feel compelled to tell my story, hoping that perhaps just one person who has been misdiagnosed could be helped out of this crippling situation. Then, my lifetime of suffering will not have been in vain.

If you know of someone who has suddenly begun displaying some of the symptoms that I have described, please don't accept the off-handed diagnosis of Parkinson's disease or dementia. I hope you'll urge that person to have an MRI of the brain.

It could save that person and his/her family from years of needless suffering. My book, Wacky, Wet, and Wobbly: A journey through a lifetime of undiagnosed hydrocephalus (water on the brain) has just been published. It chronicles my lifelong struggle with this crippling condition.

Doug's Reply. Jeanne, it's incredible that you ultimately found a solution to your condition! It must feel like being reborn in a new body.

Tell me, is your condition Normal Pressure Hydrocephalus (NPH) by chance? Or is NPH what you're referring to when you mention adult-onset hydrocephalus?

I have written about NPH previously, and it involves hard-to-detect hydrocephalus which mimics the symptoms of dementia.

If not, does your type of hydrocephalus have a specific name?

I encourage visitors to this site to comment on Jeanne's story below. To add a comment, click the "Click here to post comments" link below.

Then buy her book, learn more, and help spread the word.

Jeanne, thanks so much for sharing your story.

Best regards,
This is information only. It is not medical advice, diagnosis, or treatment.

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May 03, 2016
Response to Doug
by: Jeanne DeBold

My hydrocephalus was from birth. It did not just develop in my later years. My goal in trying to reach out to baby boomers is to alert them to the fact that hydrocephalus can develop in later years as a result of the aging process. If just one person is saved from the years-long suffering that I endured, then my misery will not have been in vain.

Doug's Reply. Great to hear from you, Jeanne. Of course, I understand now, yours couldn't have been the adult-onset type, since as you said, you always had the condition.

I'm sure you will end up helping maybe a lot more than just one person. I'll keep spreading the word about this.

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