Programmable vs. Fixed Valves

In the late 90's, programmable or adjustable valves were invented to treat people with hydrocephalus.  This means that if more or less CSF needs to be drained, the valve can change to multiple settings by means of a magnet.  The magnet is placed on the outside of the body over the valve and is rotated to change the setting accordingly.  Each shunt manufacturer has different ranges for settings and each brand uses different materials for the magnet.

Reprogramming a valve is non-invasive and could prevent future surgeries.  If a person has a fixed valve meaning that CSF flows at low, medium or high pressure, he or she would need surgery to replace the valve if the brain changes how much CSF it needs in the ventricles.  This can be an on going problem.

Unfortunately not everyone is a candidate for adjustable valves.  In the last two years we have learned that I am one of those people. 

My first adjustable valve was placed in 2003.  Immediately upon it being inserted, I started having intense pain in my head above the valve and just didn't feel "right".  I felt that pain every single day.  My doctor at the time misdiagnosed me with nerve damage.  But when my valve was exchanged for a newer one in 2013 the pain became even more intense.  I felt that pain every day until that valve was removed four months later.  A fixed valve was put in.  Now remember a fixed valve has no metal components in it.  Once the fixed valve was put in, the pain went away.  We think that I have some sort of metal allergy. 

Another problem I had with programmable valves was that all my physicians always had trouble programming them.  They wouldn't move, would get stuck, or move to the wrong setting right in front of the physician's eyes.  The adjustable valves would also reset by themselves often.  For awhile they were reseting every two weeks.  Although it is a relatively simple procedure to reset a valve for most people, it is dangerous when the pressure in the brain is fluctuating that often.

I had one more problem with the programmable valves and this one is by far the strangest.  I used to get shocked.  All the time!  Just like when there is too much static electricity in the air.  Anytime I touched something, someone, or started my car I was shocked badly.  I would get a shooting pain that went straight to my valve and then I would get a headache.  One time I laid down on a metal slide to look up at the sky and when my head touched the metal I felt like I was being electrocuted.  My valve never worked the same after that and ultimately had to be replaced. 

My doctor, everyone at the doctor's office and even the shunt representatives had never heard of this happening.  It was maddening because they looked at me like I was crazy or just didn't believe me.  But just ask my husband.  He can tell you how much it drove him insane that I would shock him every time I kissed him.  We got to the point where I had to touch something else first before we kissed.  But once the fixed valve was put back in all that went away.  So either I have super hero powers or I have a metal allergy.  I am leaning more towards the metal allergy since I can't even wear jewelry because it irritates my skin so badly. I can't take iron or zinc either. My current physician has decided that programmable valves are no longer an option and I agree whole heartedly. 

My current fixed valve needs to be replaced because I am over-draining.  My surgeon had to move my shunt to the left side due to circumstances beyond his control.  It had been on the right side for 36 years.  The ventricle it was in is collapsed from being shunted so long.  Only the catheter was holding the ventricle open which made flow minimal.  The left ventricle is not collapsed and flows much better which is causing my over-drainage.  But now I need to have another surgery to remedy the situation.

The purpose of this post is not to criticize either types of valves.  I just want to educate people and share my experience.  Programmable valves are a fantastic invention and one of the only improvements in the treatment of hydrocephalus in my opinion.  Many people are able to function with them successfully.  The same can be said with a fixed valve.  As long as the brain does not change how much pressure it needs, chances are that the valve could work properly for years.   A patient and physician just need to determine what the best option is. 

I have also learned over the last couple of years that not all shunts work the same.  Each shunt manufacturer truly is different.  People in my life are always so quick to blame the doctors for everything but they don't take matters like this into consideration.  Treating hydrocephalus can truly be trial and error.  How could my physicians possibly know that I would have some sort of metal allergy when I didn't even have standard symptoms of one?  But we were able to determine without a doubt that the magnet was the culprit of my problems.   Also one would think that all shunts work the same but that isn't the case.

If you do have an adjustable valve be cautious and aware of magnets around you.  They are everywhere.  In your phones, speakers, lap tops, microwaves, etc.  If you are traveling carry a shunt card with you from your manufacturer that states you have an adjustable valve.  Then you can avoid going through scanners when going through security.  My valve almost always readjusted at airports.  There are strong magnetic fields all over airports.

Even though I may have to endure more surgeries than someone with an adjustable valve, I have piece of mind knowing that my setting is not going to change randomly when I may not be near a hospital and that the shocking and horrific pain is gone...for good.