Hydrocephalus - Not Our Friend

Hydrocephalus is, simply put, excessive spinal fluid (or water) on the brain.  The water is there because of an obstruction, a tumor, or brain injury.  Generally, the physicians do not know why it occurs unless, of course, there has been a recordable or obvious injury or tumor or obvious blockage.  In dad’s case, they don’t know why its there.

How did we first come to this conclusion?  Well its not definitive but because Dad’s symptoms that we have been associating with Alzheimer’s have been getting worse.  I’ll stop here for a point of clarification.  You may be asking yourself the same question(s) we have:  how could they misdiagnosis this?  Well, it’s common.  Hydrocephalus looks and acts just like dementia or Parkinson’s disease.  You just don’t know until you do a CT of the head.  In Dad’s case we did one in 2010 that did now show any significant atrophy, damage or extra fluid.  The CT scan performed this year shows a fair amount of atrophy and extra fluid.  We do not rule out Alzheimer’s at this point.  We need to get a few more tests.

The first test they want to put Dad through involves a lumbar puncture – also known as a spinal tap.  Yeah, ouch!  They are going to remove some of the fluid and run tests on it.  They will also monitor his behavior and more specifically his walking and gait.  Dad has been hunched over, shuffling his feet, has a wider than usual stance and walks very slowly.  If there is a change in his gat within 48 hours of the puncture, it’s a really good indication that we have an overabundance of fluid causing pressure. 

They will also inject a dye in to the spinal fluid, known as a NM Cisternogram.  In the normal adult person the die will be absorbed within 12-24 hours.  Dad will have a test done 24, 48, and 72 hours after this procedure to track the dye.  If the dye is still detectable they will be able to see how far, or not, it has flowed.  If it’s completely absorbed within the 12-24 hour time period, we may actually be able to rule out hydrocephalus.

Dad will also undergo about 3-4 hours of psychological evaluation to determine the level of memory and recall issues.  The information gained from this evaluation, along with the lumbar puncture and cisternogram, they will then determine if he’s a positive candidate for treatment for hydrocephalus.

Phew – ok – got it?  Great.  Let’s move on because there will be a test at the end of this…ok just kidding but that would be kinda cool just to see how much you were paying attention…

So if Dad does have to have surgery to fix the problem he will have a shunt placed in his head.  The following is taken from the Columbia University Medical Center Department of Neurosurgery and can be found here: http://www.columbianeurosurgery.org/conditions/adult-hydrocephalus/

Ventricular shunt surgery: If a patient’s symptoms improve with spinal fluid drainage, a shunt surgery is offered to the patient (and family). The goal of a shunt is to divert CSF into another region of the body where it can be absorbed, such as the peritoneal (abdominal) cavity or into a vein just above the heart. The shunt is a soft tube that is just over 2mm (less than 1/8 inch) in diameter. The synthetic shunt material is generally very well tolerated by the human body. The entire shunt is implanted either within the skull or under the skin. No components of the shunt are visible outside of the body. Between the shunt catheter in the brain and the catheter that goes to the abdomen or bloodstream, there is a one way valve that regulates CSF flow through the shunt. If there is too much flow, the ventricles will collapse and bleeding can occur. If there is too little flow, the patient’s symptoms will not improve.

…Shunt surgery is usually brief and safe. The shunt is implanted under general anesthesia in a procedure that takes about an hour. A small hole is made in the skull, and the membranes between the skull and brain are opened. The brain end of the shunt is gently passed through the brain into the lateral ventricle. The valve and abdominal (peritoneal) end is passed under the skin and then implanted into the abdominal cavity through a small abdominal incision. For venous shunts that are placed just above the heart, a percutaneous, minimally invasive technique is used.

We have several tests to get through and then, if he’s a candidate for surgery, we’ll talk about it.  Our family and close friends will be asked to add their opinions.  The ultimate decision belongs to Dad.  His questions are the same as ours: what will happen if I don’t do this, what will happen if I do this?

If left untreated the pressure on the brain will eventually build up to the point of causing severe mental and physical impairments; and will eventually lead to nursing home care and death.  fifty-percent (50%) of patients will see improvement in walking while only 8% will see changes in short term memory.

So what’s the point?  The point is trying to figure out what will give Dad more of a quality of life.  That’s the big question and no one can really say for sure. 

Dad’s response to me in the car once I reviewed with him again what had just occurred in the doctors’ office:  “I think I would rather be with Mom then have surgery with only a 50/50 chance of getting better.  And having the same outcome if nothing were done.”  He has a point.  It breaks my heart.  What would you do?