Will You?

Endoscopic Fenestration is a new technique that is utilized by a handful of neurological surgeons across the globe.  The reason why I am posting on this subject is to hopefully create awareness for an incredible medical breakthrough.  Although this procedure has been in development and utilized for almost a decade, hardly a soul knows about…..including the supposed experts.

In  2006, my wife and I were trying to find the source of my son’s continual and concerning habit of breath holding.  At the time he was about a year and half old.  We had exhausted just about every possibility and the pediatric neurologist was about to confirm the actions as behavioral.  We agreed to one last test to be sure.

The MRI was performed and found a large mass behind the left eye or the frontal lobe region of the brain.  It was about the size of a golf ball that was squished oblong.  Needless to say this created massive concern.  The breath holding (which ended up being a blessing in disguise) took a back seat to what seemed at the time to be an impossible situation for first time parents to deal with.  After seeing the local pediatric neurological specialist, we were presented with the official diagnosis of an arachnoid cyst.

The Arachnoid Membrane is one of three cerebral membranes that protect the grey matter.  It is the middle membrane that is essentially a web of fluid providing irrigation and protection to the brain.  When a cyst develops in the membrane (they don’t know why they develop) it is basically a plumbing clog.  Fluid becomes trapped in an area and the flow is disturbed, impeded, or misdirected.  In my son’s case, the cyst was growing and rapidly.  Imagine an elastic bag filling with no release of fluid.  We were fortunate that the mass was not cancer, but we were dealing with a growing problem that would displace the developing brain.

The frantic search began.  We heard from a couple of sources that the only way to deal with such a problems would be to “wait and see” if problems arise from a mass growing in a developing brain or perform an invasive procedure that would leave a permanent shunt.  That shunt would have to be regularly maintained and “upgraded” through time for the rest of his life.  Aside from the uncomfort and vanity issues this may pose, it would limit – substantially, physical activities.

Given the growth of the cyst, which was the size of a pea nine months prior, the “wait and see approach” was not going to be an option.  That left what I now call Frankenstein medicine.  The idea of my boy being permanently saddled with this burden did not sit well.  I refused to believe this was the only answer.  I pulled all of my resources to obtain any information or remedy I could find.  After much help from family and friends, we decided that the best specialist to see was Dr. Ragheb at Miami Children’s Hospital.

1. He simply said, “We can fix it.”  Well….what about the shunts everyone else is talking about?  “That’s not fixing the problem – its maintaining it.”  Physical limitations or restrictions?  “Don’t foresee any, but let’s see how it goes.”  How do you fix it?  “Endoscopic Fenestration – your son would be number nine.”  Risks?  “Less than the currently prescribed procedure and if it doesn’t work, we go back to the shunt ‘solution’ “    What is Endoscopic Fenestration?

Endoscopic Fenestration is basically brain surgery done with a scope.  It is far less intrusive than current procedures and very minimalistic in approach.  In my son’s case, Dr. Ragheb drilled a small hole above is left ear.  Utilizing scope technology, he navigated to the cyst and entered through the opening that was allowing fluid to collect.  Then he pushed to the other side of the cyst, drilled a hole to create a drainage flow into an acceptable arachnoid reservoir.  He then backed out of the cyst and sealed the original opening that was allowing the cyst to fill and grow.  The entire procedure took about 4 or 5 hours, and a couple days of recovery and observation.

It’s been a little over two years since the procedure .  My son is without a shunt and hardly has a scar.  He does not remember any of those events or the surgery.  He has no restrictions, although the Doctor strongly recommends not playing football.  After his recent 2^nd annual checkup, the cyst is smaller, the brain is growing and maturing in a healthy way around the growth, and Dr. Ragheb is calling the procedure a success.  I do not have such a modest description of the incredible fortune we have had for being able to utilize his expertise.  My family will be eternally indebted to Dr. Ragheb’s amazing abilities.

The abnormalities that require this type of procedure are rare to be sure.  Unfortunately, they still occur all the time in cities all over the United States and the World.  Currently, there are only five people on the planet that are trying to wake up the medical community.  If you know anyone – particularly a child – with a growth, cyst, or tumor in the brain, please at least ask if Endoscopic Fenestration is an option.  Even the experts may not know, so please push the issue.   Many of Dr. Ragheb’s success stories were never supposed to live, much less lead normal lives.

WSEjr

after thought:  Why do we pay professional athletes so much more?