Shunt Malfunctions with Hydrocephalus

[JazzyK]

I have an older sister who is 25. When she was little, around 5 or 6, she had a shunt placed in her head for hydrocephalus at a hospital in Los Angeles. She has been fine ever since then, untill this past Thanksgiving. She was having headaches, vomiting and dissiness. When she whent to the hospital, the ventricals in her brain were swollen and had to have emergency surgery to replace the shunt and drain the fluid. It is now January, and she has had 2 more surgeries to try to fix the same problem, for some reason the new shunt they put in isn't working, and she is in the hospital at this very moment, and the neurologist is thinking about another operation to try to fix the problem. She lives in Las Vegas, where they only have one hospital with a neurologist, but its at a childrens hospital, which makes no sence to me. I am very concerned about the what the outcome will be of this recurring problem and wondering if we should take her to a hospital in Los Angeles? The only problem with that is her insurance is through the state of Nevada because her job isn't providing their employees with insurance at this time. What is the best option for her? What might be the cause of the shunts malfunction, both old and new? And what are the damages of this problem, and if it keeps occurring?

Thanks,
Jazzy.

[rickyroq1]

Hi, read your posting. I can say firmly, you can try Harbor UCLA Medical Center hospital located in Torrance Ca.  This particular county hospital has very good team of neurologist.  Go into the ER to get checked in for a review. Once you go in, inform them of your medical condition. The next step would be to order a ct scan to review the images of the shunt.  If th images show problems, they can upgrade the patient to ICU, until the operation is set.  
Try coming in before 7am, so you can get a quick prognosis from the doctor.  

[RBCJ3745]

I AM 34 YRS OLD I HAD SHUNT PUT IN WHEN I 18 MONTHS OLD IT WAS REVISED WHEN I WAS THREE THEN WHEN I WAS 10 THE TUBING TO MY STOMACH BROKE OFF FROM THE SHUNT, DOCTORS REMOVED THE TUBE AND DID NOT REPLACE IT, SAID THEY WOULD SEE HOW I WOULD DO WITH OUT?? ONE YR LATER I STARTED HAVING GRANDMAL SEIZURES. THEY STARTED GIVING ME MEDS FOR THE SEIZURES. TO THIS DAY I STILL HAVE TO TAKE MEDS FOR THE SEIZURES, IN WHICH I STILL HAVE OCCATIONAL SEIZURES. ARE THESE SEIZURES RELATED TO THE FLUID ON MY BRAIN OR CAN IT BE FROM THE PUMP WHICH IS STILL IN MY BRAIN? NO ONE CAN GIVE ME AN EXPLANATION.
WHY IS IT THAT I WOULD NOT NEED A PUMP SINCE THEY SAID I NEEDED ONE THEN, WHERE DOES THE FLUID GO? COULD THIS BE WHY I HAVE OCCATIOAL SEIZURES STILL FROM BUILD UP OF FLUID ON MY BRAIN??

ANY HELP WOULD BE APPREICIATED..

[TeamHydro]

I poked around online some more last night and I haven't found the stat on average number of years prior to shunt failure, but 4 years does not seem off to me.  I also found a fact sheet from the Hydrocephalus Association stating that "50% of shunts fail in 2 years and 85% of shunts fail within 10 years."  Rsox34's claim that "shunts should last 15-20 years" seems like an overly optimistic, uninformed statement statement based anecdotally on the fact that he was fortunate enough to have a long-lasting shunt.  Unfortunately, medical science simply does not support his assertion.

I hate to be a pessimist, but it is important that we get the facts out there and paint a realistic picture of the dire situation many with hydrocephalus find themselves in.  Without doing so, we will never get the funding and attention from the medical community that we deserve.

[TeamHydro]

I'd be interested to hear more about your "extensive research."  Please share it with us.  

I'll look up the study (and see if I can't post it here) that produced the 4 year average revision figure...but here is the link to a piece of research by Dr Nalin Gupta of UCSF Medical Center published in the Journal of Neurosurgery: "Long-term outcomes in patients with treated childhood hydrocephalus."  He found that over 20% of the over 700 individuals in the study had needed 11 or more shunt revisions...84% had undergone at least 1 revision.

http://thejns.org/doi/abs/10.3171/ped.2007.106.5.334

[rsox34]

Shunts can malfunction for a variety of reasons including:  mechanical failures, wrong shunt valve used, infections, obstructions, catheter slips out, catheter cracks or become disconnected.  Sometimes the body just does not like foreign objects being put into it and rejects what it views as an intruder.

Your sister is probably being seen by a pediatric neurologist/neurosurgeon because they are more familiar/experienced with hydrocephalus and shunt surgeries.

I respectfully disagree with Team Hydro regarding the life expectancy of a shunt.  From my extensive research--shunts should last 15-20 years.  I've had mine for 15 years.  Sounds like your sister's first shunt lasted the normal length of time.  

[TeamHydro]

Unfortunately shunt malfuntions are far too common.  It is a 1950s technology suceptible to clogging, infection, over-drainage, under-drainage, and any number of other complications.  My sister has had over 100 shunt revisions in her lifetime (she is 25) and the doctors still can't get a working shunt in her.

You raise another issue in terms of hydrocephalus treatment.  Many adult neurosurgeons are afraid to take on hydrocephalus patients because there is no cure and treatments are invasive and largely ineffective (the average shunt lasts only 4 years before failing, requiring another brain-surgery for the patient).  As a result, patients who find themselves "growing up" with shunts (like your sister and my sister) who then experience problems in adulthood are often left out in the cold.  They either need to convince a pediatric neurosurgeon to take them anyway, which is a feat in itself, or convince an adult neurosurgeon to take on a difficult patient with very few treatment options.  This is a huge problem as children (like our sisters) who would have died in the past are now living to be 20 or 30 years old...and then being left to suffer without effective treatment options.

I wish I had a happier outlook for you, but hydrocephalus treatment is in a terrible way -- years behind where it should be.  I feel so hopeless as I watch my sister suffer.  We started Team Hydro to raise funds and awarenss for the condition by swimming from Alcatraz to San Francisco.  Hopefully our efforts will move us towards a cure for this terrible conidtion afflicting over 1 million Americans.

[Dr. A. Srivastava]

Thank you for your question. Although without being able to examine her I can not offer you the specific advice on diagnosis and treatment that she needs, but I would try to provide you some relevant information about her health concern.

If she has continuous headache, possible causes may be shunt is either under-draining or over-draining. Her doctor can assess this with a lumbar puncture and measures the fluid pressure. He/She may make some adjustment of the shunt to allow it to drain more and can monitor if the headache improve. Another possibility could be shunt is over-draining, that may lead to low CSF pressure that can also lead to headache. This may improve when the person lies down and gets worse when the person sits or stands. Other possibility could be migraine or cluster headache since these types of headaches are quite common in females. Even then if she suffers continuous headache, please arrange an appointment with a neurologist right away who will evaluate the further underlying disorders here that may be the main reasons of her headaches and can suggest her appropriate treatment. Hope this information proves helpful to you.