Hydrocephalus and Shunts - How do they work?

Although Cameron has had a shunt for 4 years, we’ve never really taken the time to truly explain how it works. In light of the last two weeks, I thought this post would be helpful for those who really want to understand what the heck is going on in Cameron’s brain. The picture above of the brain illustrates the ventricular system. The flow of fluid is essentially from top to bottom. In Cameron’s case prior to his birth, the Lateral ventricles were increased in size from typical ventricles. This buildup in pressure is called Hydrocephalus.

After his birth at 32 weeks, an Endoscopic Third Ventriculostomy was done, this was in an effort to avoid the shunt (a man made device). 2 months post ETV Cameron’s Ventricles were continuing to increase in size, so he went in for another surgery to have the shunt placed, this worked to keep his ventricles at an acceptable size.

The problem with a shunt is it's a man made device and can malfunction. Some children have many, many revisions. We have been lucky to only be on our 2nd revision. When the shunt isn't working, many things can happen:
1) The pressure builds, enlarging his ventricles and pushing his brain against his skull.
2) Slit Ventricles – where the ventricles decrease in size significantly, that they become slit like and there is not enough fluid in the ventricles (what it looked like on our MRI prior to surgery 9/2/10
3)The tubing for the shunt can snap, or the child can grow that the tubing is too short

All of these things can lead to a shunt malfunction causes irritability and vomiting among other things.


This picture shows how a shunt is placed to go into the ventricle and allow fluid to drain out the top, down a tube which is placed just under the skin and drain into the belly. The pink device on the top of the shunt is a valve to allow fluid to drain, but not allow fluid into the brain. The green stick like thing going into the brain is called the Catheter. In Cameron’s case, during his recent surgery they placed a new Catheter and moved the Valve around a bit. The shunt still connects to the same tube his old shunt used to then drain down into his belly.

One week post op when Cameron presented with lethargy and high fever, a shunt infection was suspected. The highest risk for infection is in the 6 months following a revision. If there is an infection they have to take out the entire shunt, and the patient is on an external drain for 7- 10days. I hope we never experience this.

The MRI on 9/10 showed his lateral ventricles has increased in size remarkably from the scan done prior to surgery, so all the alarm bells went off for the nurses, radiologists, residents and so forth telling us he would need another revision. But as we know his Nuerosurgeon liked the size of the ventricles compared to the pre surgery MRI where they almost seemed to no longer exist.

If after only one week there was such a dramatic change it certainly makes one wonder what they look like now, we’ll find out 10/5 when we go for another MRI.

We have been CVS episode free since the surgery, so there is hope that this shunt revision was the fix we needed. For now he continues on the Propranonol. Only time will tell…

I hope this helps better explain how shunts work.

Top Ten lessons from 9/10

1. Only your Childs primary neurosurgeon will make the call on surgery, no matter how many professionals will tell you in a 12 hour time period he will need surgery tonight.

2. There is power in numbers. I believe The many people who have prayed for our family in the last 24 hours have brought Cameron to a place where surgery was not a sure thing.

3. The Eric & Kathy Radiothon to support Children's Memorial Hospital going on in the lobby of this hospital is not for the faint of heart and is a reminder for all to hug your healthy children. On a side note 3 out of the last 4 years Cameron ends up inpatient during this radiothon, while its for a great cause I'd prefer to support from home!

4. Speaking of home, in our return to 3west and the 6 bed icu area we have seen two families that have not left since we were here just a week ago. Count your blessings

5. I love the nurses on 3 west, Kim our favorite from last week got me one of the brand new "parent" chairs, there are only 24 in the whole hospital. I was so excited about trying this bad boy out in hopes of actual sleep.

4. Sorry, but the new " parent" chair gets a bad review from this parent. I'll take the 20 year old version next round..

3. We have some pretty amazing friends who continue to show up for us no matter how many times they get the call. Thank you morels, renkes, Julie, ap & mike, kunish fam.

2. I don't have any more lessons, too tired, but 8 lessons from 9/ 10 didn't work as a title.

1. The latest update: Cameron did not have surgery and will not be having it anytime soon. The high fever has not returned since last night, preliminary results are no infection or psuedocyst, hooray! Only a few heart rate drops over night Today we wait for final cultures and hope that Cameron wakes up ready to roll into the life center. Dr. Bowman is actually happy with the increased size of his ventricles " we just need to be sure Cameron is happy with them" she said. It is possible we could take this roller coaster ride again at any moment, that's life with hydrocephalus but for now we concentrate on getting home today...

**post update 1:30pm Saturday 9/11/10 - WE ARE HOME! And my dear husband just informed me that my post repeats numbers and actually only adds up to 9! Well this is what happens when you don't sleep for the last 24 hours much less the last 5 months...pretty telling if you ask me, I got a good laugh when he told me.

Back in the hospital

Just a quick note cameron is back in the hospital for what appears to be shunt malfunction. Preliminary results show no infection, but ventricles are increased in size so we are waiting on final word on surgery. He has a high fever and is really out of it. Once dr bowman gets out surgery we will have a game plan.

24 Hours and 24 Stitches Later

The Sweet Heart Bandage they used...


Ok, kids are amazing, and Cameron is nothing short of a miracle. Just over 24 hours after we rushed Cameron into the hospital he was walking out the next day.

He ordered up his favorite meal for dinner, you can see how tasty it looks! The funny part is he seldom takes more than one bite of that burger, and ketchup is a must, an absolute must for the fries.



As usual he was the first one at the door to the Life Center when it opened up at 9am. The Life Center is amazing, it's packed with games, toys, and it's full of sunlight, which is so important.

I couldn't wait to get Cameron home to try and wash out some of his hair, not only did it smell of surgery to me, it looked as if a bottle of Dippity Do, or whatever that gel is called, was used on his long locks.



And it's a good thing for those long locks, as part of his head did need to be shaved, but with a little comb over action we are able to successfully cover up the incision. (it's a nasty one as you can see her, for those who are squeamish my apologies!)


Prior to discharge we met with his nuerosurgeon and talked about precautions, of which there are many. We are due back in two weeks for an MRI and post-op check. Should anything, and I mean anything resemble a CVS episode or shunt malfunction happen we are to bring him immediately to the ER. Given that they have gone "in" Cameron is now at increased risk for malfunction and/or infection for the next 3-6 months. So we'll be sticking close to home for the remainder of 2010! I then hope to close this chapter of our lives!

We got home just in time to Celebrate Grandpa George's Birthday! Cameron sang Happy Birthday to him at least 20 times! while Connor did partake in the signing I think he was even more pleased with the cupcakes...


Cameron went back to school today, which I think is good for all. Having missed all of last week, but for the first day it's time. I feel confident the school is well versed on everything, we've met and reviewed protocols, they provided very detailed instructions and infromation which Dr. Bowman signed off on so I felt ok leaving him today. Not 5 minutes had past and I already got a call from the school nurse, concerned about some redness near the shunt track. Connor and I went back into the school and it was all fine, just some post-op under the skin redness he had that I forgot to point out to them. But A+++ to them for calling me right away.

So now we wait, I am trying to take it one day at time. If we can get 7 days post last episode I will feel good, 14 which would be Friday the 17th I will feel even better that the 5 month nightmare is over. I know only time will tell, but we have hope. (oh and a lot of fear too, but that's for another day!)

Surgery update

Well we knew this week was going to be rough but it took a turn we didn't necessarily expect so soon. Which is probably for the best as it was over before we had time to even think about it!

During our trip to see the cvs specialist in Milwaukee yesterday Cameron slipped into another episode, less than a week since the last one. The meeting with dr. Li was very informative (more on that another day). We got back home and by 6pm Cameron seemed to be out of the episode. Only to slip back in a later that night. I slept next to him and it was clear we were back in the woods, little sleep was had.

Morning came and I headed off alone for the consult with dr bowman, neurosurgery, as Cameron was puking at home so dad stayed behind.

About 20min into the conversation it was decided he needed surgery today. Dr bowman noted his ventricles were almost non existent on film and the right side appeared collapsed. Given the frequency of vomiting episodes has been getting worse she came right out and said she was not comfortable with his situation. While he can live with CVS, he can not live with a shunt that is constantly malfunctioning and waiting for an emergency is not a good idea.

So as I kissed my boy godbye in the OR I knew he was In very capable hands. Mom you would be happy I even had the Lourdes water with me and blessed him before leaving.

Cameron went in for surgery at 1:30pm and we saw him in recovery just after 3:30pm. If someone had told us this was going to be part of our thursday agenda, well that's crazy talk.

His eyes were open and the smell of surgery took me in. It's been two years and there is something about that smell you just never forget it. There were some tears from Cameron, a pink pull up later exchanged for a trip to the bathroom and resistance to keep his head at a 30 degree angle.

The dr report was "it was clear as mud". Part of the shunt was not working at optimum levels, part was, they replaced the catheter and pushed part of the device further into the ventricle. And despite the imaging showing some unfavorable anatomy dr bowman said he has much better anatomy than films would suggest. This is a good thing so we don't have to worry about placing the shunt in a different part of the brain at a later date. There was also surprise in the amount of calcification around the shunt. Apparently what she found is typical of a teenager shunt. So it was a good thing we did this even if it does not resolve the episodes.

So now we wait to see how he responds and if the episodes reduce, or with any luck never return. We hope we have not opened "pandoras box" by going into his brain but it was clearly a good call that we did it.

Cameron is doing great for just having his head sliced open.

He has ordered and consumed most of his "cheesburgerfriespeanutbutterandjelly" favorite meal, can't ask for more at this point.

With any luck we will be home tomorrow night!