June 11, 2010 – Three Options but None Desired

During our appointment with Dr. Ciricillo two weeks ago, he and I discussed three options as potential next steps to treat the hydrocephalus in Katelynn’s fourth brain ventricle.  Honestly, none of them were desirable, as I could only recollect painful memories of past procedures.  Still, I knew we could not just leave this alone, as the repercussions of increased pressure on the mid and hindbrain would be potentially life-threatening if left untreated.  Dr. Ciricillo explained that each procedure would essentially relieve the build-up of excess cerebrospinal fluid (CSF), and we may even see potential improvement in Katelynn’s motor skills within a week if the operation is successful.  With the inflated fourth ventricle pushing up against Katelynn’s cerebellum, this may actually explain some of the decreased coordination and jerky movements I have noticed in my daughter.  The potential of improving Katelynn’s motor skills and chances of walking independently sooner sure was a welcome bonus, but the heart of the matter is still to ensure this problem does not become critical.

As for the three operations, we first talked about placing another ventricular shunt and connecting the tubing in a “Y” arrangement with the existing shunt system in her right lateral ventricle.  This option did not settle well with me from the start, since Katelynn had already experienced the need for a shunt revision when the catheter in her ventricle leading up to the shunt became blocked with a blood clot roughly two years ago.  The idea of a shunt malfunction is terrible in itself, but adding another shunt would only increase the chances of something going wrong sooner than later.  Additionally, connecting the two systems would only complicate troubleshooting, since it would not be an easy task to locate blockage.

Option number two was an endoscopic procedure which would essentially create an artificial channel between Katelynn’s swollen fourth ventricle and her shunted right lateral ventricle.  By creating this pathway, the increased CSF would ideally flow toward the existing shunt and empty out as it has faithfully been since Katelynn’s revision surgery.  The procedure would involve the use of an endoscope, a medical instrument consisting of a very thin, flexible tube with a light and camera system at the tip.  There would also be attachments to allow Dr. Ciricillo to make the necessary manipulations to create this channel or perforation to relieve the CSF pressure.  The endoscope would be inserted via a small incision and the whole operation would be completed in thirty minutes or less, which means this option is the least invasive of the bunch.  I am not certain and will need to check with the doctor, but we may be looking at an Endoscopic Third Ventriculostomy (http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf) operation.

The last choice would be a fourth ventricle cyst fenestration, which is essentially the creation of an artificial opening to simulate the normal CSF draining pattern Katelynn would have experienced had her intraventricular hemorrhage not blocked the natural “drains” with scar tissue.  My initial reaction to this procedure was positive, as it sure seemed like it would be the most effective solution to remove the “plug” that is causing Katelynn’s fourth ventricle to inflate like a balloon.  However, Dr. Ciricillo informed me that this procedure would actually be the most invasive, as it would require drilling near the hindbrain, and we should expect a two-week recovery period.  Needless to say, my optimism faltered heavily and door number two began to look much more promising.  I was not able to locate any free information on this procedure, but a study done in 1998 by the Pediatric Neurosurgery Service at Duke University (http://content.karger.com/ProdukteDB/produkte.asp?Doi=28745) seems to have found the fenestration to be successful in treating five out of six pediatric patients.  Of these six, four had experienced “five or more failed shunt procedures.”  After reading this abstract, my doubts swung the other way, because I would not wish to put my poor Katelynn through any additional neurosurgical procedures.

Katelynn and I left Dr. Circillo’s office to report the news back home to Jenn-Jen and Adam.  The doctor informed me that he wanted to review the CT and MRI scans and make a recommendation within the next week.  In the meantime, we were instructed to help Katelynn recover from a lingering cold she had been battling for a couple of weeks and stay healthy.  Apparently, even a mild respiratory issue such as a common cold puts unwanted risk in a surgical operation.  This basically meant that we should avoid crowded places and stock up on hand sanitizing gels and wipes.

Dr. Ciricillo’s office did finally call back after we followed-up twice, anxious to know which procedure Katelynn would be undergoing, as well as when the operation will take place.  We learned that the endoscopic procedure is the route the doctor wishes to take, but will need to wait until Monday to get a surgery date.  A large part of me is breathing a sigh of relief, since endoscopy’s diminished invasiveness is welcome anytime.  Yet, there is still that lingering thought that makes me wonder what if this is not successful in stopping the swelling.  I am trying so hard not to be anxious and am working on giving this to the Lord, but it gnaws at me throughout the day.  Please continue to keep us all in your prayers and, hopefully, I will have even more to share on Monday.

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