VP shunt dependency

[JohnSz]

After four years of excruciating headaches and ultimately a CT scan that showed enlarged ventricles, my 23-year-old daughter was diagnosed with hydrocephalus in 2004.  She had surgery for a third ventriculostomy that year, but it brought no relief from the headaches nor did it reduce ventricular size.  In November 2006, following a second pituitary surgery to remove a microadenoma (treatment for Cushing's disease), she received an adjustable venriculoperitoneal shunt to stop CSF leakage.  Since then, she has had two revisions, one an adjustable shunt and the latest a non-adjustable version--three shunts in six months.

For her mother and I, these shunt blockage events are extremely traumatic.  We live in a constant state of alert looking for signs of the next failure.  For our daughter, of course, the subsequent brain injury from increased CSF pressure means repeated periods of recuperation and therapy.  Because the failure rate is so high, we're wondering if there are options to pv shunts for treatment of hydrocephalus.  Is it possible for her to live without a shunt?  Is it worth attempting another third ventriculostomy?  Are there other procedures that have a longer patency?

Thanks for any insights you can provide.

[Sherrizim]

Hi, I know just a little about V-P shunts.  My son has had a non-adjustable V-P shunt since he was 2 years old, so for 7 years now, and he has never needed a revision (i.e., the shunt has never failed, as far as we know).  How long has your daughter had her latest shunt?  I do know that protein in the CSF makes shunt failure more likely, and that is not the case with my son, I don't know about your daughter's case.  Regarding shunt dependency, that was something my son's doctor discussed with us, as to some extent, we did the shunt not knowing if it would help him and/or if it was the best option for him.  But we had to be aware that after some indefinite period of time, he would likely become shunt-dependent, and removing the shunt would no longer be an option.  The doctor had always just said that before removing the shunt, he would disconnect it (or something like that), so that it could be easily reconnected if his ICP increased.  But a while back we made the decision to keep the shunt without attempting a period of time without it.

I do know there are different types of shunting procedures (i.e., where the shunt is placed), but I don't know the advantages or disadvantages of them.

You said that you live in fear watching for signs of shunt failure.  Is your daughter's health such that she isn't able to know the signs herself?  I remember discussing that with my son's doctor, and he reminded me that at some point, when my son was old enough, it would become his responsibility, not mine.

Are you not getting satisfactory answers from your daughter's neurosurgeon?  Perhaps it's time for a second opinion?

Best wishes,
Sherri

[JohnSz]

Hi Sherri,

I appreciate you sharing your story.  It helps to hear others' experiences and perspectives.

My daughter's lthird shunt has only been in place since May 27th--almost three weeks now.  She's home with me following three days in the hospital, but is slow recovering her physical abilities.  She still wants to sleep 15 hours a day and extreme fatigue is one of those alert signs for us.  We're making the rounds of physical, occupational, speech, and soon opthalmological therapists on a weekly basis along with our regular trips to neurosurgery, neurology and endocrinology specialists.

We weren't made aware of the ramifications of shunt placement--eventual dependency and repeated failure--until the first shunt failed.  It had been placed to counter her CSF leakage after pituitary surgery and that seemed the only option at the time.  We've been told about protein in the CSF likely being a cause of plugging, but doctors at Oregon Health Sciences University seem to think there's not much to be done about it.

Unfortunately, so far my daughter seems to have little awareness of impending failure.  She's complained of headaches or soreness around the shunt valve or tubing or needing to sleep, but hasn't been able to say, "I think something's not right."  Her condition seems to become critical literally overnight so that she can't look up, or walk, or talk, is incontinent, and vomiting--and we rush her up to Portland by ambulance.  She's literally almost died four times since November.  Doctors took three weeks to figure out the shunt was failing the first time around, so her mother and I have been on a high level of alert ever since.

So, yes, we are seeking second opinions about the shunt and the possibility of having it removed.  I just don't know what all the options are nor who the experts are in this field.  I'm hoping to get some leads from this forum.

Thanks again for writing and best wishes to you and your son.

--John

[Sherrizim]

I can only imagine how frightening it is for you to see possible signs of shunt failure and fear for your daughter's life.

If you live anywhere near Michigan, there are excellent pediatric neurosurgeons at the University of Michigan.  Hugh Garton is one of them.

Best of luck to you, your wife, and your daughter.

S~

[LaRina07]

I am a 25 year old mother and have three children. I was ten weeks prematuree at birth and was in need of a shunt due to the hydrocephalus. I have had a total of six revisions and the last one being on October 16th,2003. The shunt is on the left side of the brain and I can feel all its components. I do know what the symptoms of a malfunctioning shunt are. RE: Headache,blurred vision,vomitting,tired,dizzy,having the lights off was  better and lying down.When I had my revison in 2003, I had a headache for two weeks.I had just delieverd my first child via c-section. (after a grueling 40 hours of labor and pushing with no sucsess. I felt the shunt burst but went thru so much that I did'nt want to think about it.I had the shunt replaced at the St Cloud hospital in St Cloud MN. I felt so new that I was ready to go home.They kept me over night. I would'nt wish a shunt headache or any headache for that matter on any one. It the worst pain I have ever been in. The doctor said this shunt should last 15 years to a life tiime. I had a revison in 1990 and the last one in 2003. I dont know if you want to know any of this or if you care but I wanted to share my thoughts and I want to say that I can relate with your daughter... Reguards LaRina

[Sam1971]

My heart goes out to all the parents. I was the child in the accident that caused me to have hydrocephalus at 6month old. The Dr. had to drain fluid from the top of my brain till the shunt kicked in. Unlike most kids I had my shunt for 16years before getting a new one. I had to do this only because it kinked up.About 5 years ago they put an adjustable vale in my shunt. I've had shunts for 37 years now. I would love one day not to have it. But, a little test show at least for now I still need it.
Most of these years I have had severe headaches, that can not be explained. I know from where their focused (over the shunt) has something to do with it, and I keep looking.

I am so grateful to my parents for the love and support they have given me from the beginning. I know not everyone going though these struggles can say thank you but I know thank you and love you so much. God bless you.

[sotoc25]

can you tell me some of the symptoms for a V.P. Shunt because two days ago I though i was having a headache nd it got worse nd i went to a Jamica hospital in queens they told me that I need my V.P. Shunt revised but i was transfered to Cornell hospital in Manhattan they told me that I was fine but i don't feel fine i still got the pain nd i get dizzy what do I do????