Discussions By Condition: Medical Errors

Hydrocephalus - Undiagnosed for 44 years!

Posted In: Medical Errors 2 Replies
  • Posted By: Pepecat
  • October 29, 2007
  • 05:20 AM

As a child, born in 1963 (prior to CT scans and MRIs), my husband was always told that he had a large head. Although his head was large, it was not oddly shaped and he seemed to be developing normally. His mother recalls that he often had frequency and urgency with bathroom needs. He also seemed to run slower and be slowest one in his class. His hands often trembled. His grades, however, were always at the top of his class, despite a great deal of trouble with memory.

Fast forward to 2007. My husband started noticing problems at his job. He was having feelings of being off balance when descending stairs. Sometimes he felt like his feet were glued to the ground. His mood and attitude changed drastically. He started having the urgency and frequency issues again. He had trembling in his hands and sometimes found himself very sleepy. After several reports about his lack of memory and poor job performance, he was told to take leave until his health issues could be resolved. (He had also been diagnosed as Bipolar 15 years ago.)

After seeing our family doctor, an internal medicine doctor, he was told to go have an MRI of his brain. I suppose the incontinence issues were the final clue to the doctor. The MRI showed very large ventricles filled with fluid and we immediately contacted a neurosurgeon because we knew a shunt would be needed.

Several months later, he has used all of his short-term disability and vacation time up. He now has a Codman (Johnson & Johnson) shunt valve implanted. These particular valves are notable because they can be adjusted with an electromagnetic device. Our current neurosurgeon has been adjusting the shunt down from 100 by 10's and waiting a month between changes. My husband's symptoms, however, are not improving. We finally found a neurosurgeon that is considered an expert in hydrocephalus and he immediately adjusted the shunt from 80 to 60. I could see a difference quite quickly.

We are scheduled to have an MRI on Monday and then visit the doctor to review the results. The valve must also be readjusted after an MRI due to the magnet involved with an MRI. We are hopeful that we can get to an adjustment that will allow my husband to return to work and lead a normal life again. However, since his hydrocephalus went for 44 years undiagnosed, we do not know if it is possible to remove his symptoms as he may have permanent nerve/brain damage. That is the BIG question now.

Had the pediatrician paid attention to the signs, it is possible my husband would not be going through this now. Unfortunately we are stuck with the unknown and possibly looking at long-term disability and SS disability.

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2 Replies:

  • Sorry to hear it took so long for your husband to get diagnosed with Hydrocephalus. I did not have my hydro diagnosed until I ws 27 years (I'm now 44.) I had many symptoms throughout my life--including your husband's symptoms. Hopefully his symptoms will recede as his brain gets used to the new pressures.MarkAs a child, born in 1963 (prior to CT scans and MRIs), my husband was always told that he had a large head. Although his head was large, it was not oddly shaped and he seemed to be developing normally. His mother recalls that he often had frequency and urgency with bathroom needs. He also seemed to run slower and be slowest one in his class. His hands often trembled. His grades, however, were always at the top of his class, despite a great deal of trouble with memory. Fast forward to 2007. My husband started noticing problems at his job. He was having feelings of being off balance when descending stairs. Sometimes he felt like his feet were glued to the ground. His mood and attitude changed drastically. He started having the urgency and frequency issues again. He had trembling in his hands and sometimes found himself very sleepy. After several reports about his lack of memory and poor job performance, he was told to take leave until his health issues could be resolved. (He had also been diagnosed as Bipolar 15 years ago.) After seeing our family doctor, an internal medicine doctor, he was told to go have an MRI of his brain. I suppose the incontinence issues were the final clue to the doctor. The MRI showed very large ventricles filled with fluid and we immediately contacted a neurosurgeon because we knew a shunt would be needed. Several months later, he has used all of his short-term disability and vacation time up. He now has a Codman (Johnson & Johnson) shunt valve implanted. These particular valves are notable because they can be adjusted with an electromagnetic device. Our current neurosurgeon has been adjusting the shunt down from 100 by 10's and waiting a month between changes. My husband's symptoms, however, are not improving. We finally found a neurosurgeon that is considered an expert in hydrocephalus and he immediately adjusted the shunt from 80 to 60. I could see a difference quite quickly. We are scheduled to have an MRI on Monday and then visit the doctor to review the results. The valve must also be readjusted after an MRI due to the magnet involved with an MRI. We are hopeful that we can get to an adjustment that will allow my husband to return to work and lead a normal life again. However, since his hydrocephalus went for 44 years undiagnosed, we do not know if it is possible to remove his symptoms as he may have permanent nerve/brain damage. That is the BIG question now. Had the pediatrician paid attention to the signs, it is possible my husband would not be going through this now. Unfortunately we are stuck with the unknown and possibly looking at long-term disability and SS disability.
    Anonymous 42789 Replies Flag this Response
  • Sorry to hear it took so long for your husband to get diagnosed with Hydrocephalus. I did not have my hydro diagnosed until I ws 27 years (I'm now 44.) I had many symptoms throughout my life--including your husband's symptoms. Hopefully his symptoms will recede as his brain gets used to the new pressures.MarkI also went undiagnosed until 34 years old. I had horrible headaches, projectile vomiting and unsteady gait. MRI results showed hydrocephalus from a calcified pineal cyst . I am 51 with the same shunt, horrible to get used to at first but I am well, jokingly I saw it prevents me from early dementia....my brain drain saved me!
    Anonymous 42789 Replies Flag this Response
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