Hydrocephalus Awareness Month Post 4: What does a shunt feel like?

The other day I read a post in one of my hydrocephalus Facebook groups that made me sad and also made me wonder. It was posted, "Does anyone wonder what it's like to not have a device in your head and tubing running down your neck and into your abdomen?" It made me sad because it makes me wonder if Nicholas will feel that way one day (maybe a cure will come in his lifetime!), but it also made me wonder what it actually feels like to have a shunt.

Obviously I can't ask Nicholas yet what it feels like to live with a shunt on a daily basis so I turned to the hydrocephalus community to ask them what it's like to have a shunt. I have a small community of people I know in real life with shunts but am a member of several hydrocephalus groups on Facebook and on Babycenter and they provided me with some insight.

The first thing I was told was that the side effects of having a shunt were far preferable to living with the pressure in your head from having untreated hydrocephalus. That having excess CSF was painful, caused nausea and also made you dizzy. That you experienced things like double vision and just overall felt terrible. Obviously left untreated, hydrocephalus can also lead to brain damage and death, so having a shunt is preferable to that.

Also, I heard very different things from people I asked. Some experienced nothing out of the ordinary that they were aware of and some experienced all of these things - so like hydrocephalus itself, having a shunt feels different for each individual person who has one.

The main things I heard were being able to "hear" the shunt. When a shunt turns on, most people say that they are aware. They can hear it buzzing, clicking, popping, or gurgling inside their heads. This depends on the placement of the shunt (the closer it is to the ear canal the easier it is to hear) and it appears to also depend on the type of shunt (programmable, non-programmable, maker, etc.). Shunts are not always on, they turn on when the pressure in the head indicates they should be. The newer
programmable shunts detect the level of pressure in the head and turn on when the pressure exceeds what the shunt has been programmed to maintain. Older, non-programmable shunts, were on levels of high, medium, or low pressure and would detect when the brain reached the threshold that each shunt was set for. The bad news with non-programmable shunts is that if the shunt is over or under draining, the shunt must be replaced with surgery. Nicholas has a programmable shunt which means if we determine (and we have, several times) that his shunt is under draining, it's an office visit and a strong magnet is used to reset the shunt to a better level.

Another complaint is that when the shunt is draining, if the tubing is placed close enough to the ear, it can mess with a person's equilibrium. Because there is fluid running through a tube near the eustachian tube it can make people feel dizzy. This doesn't appear to be a common side effect, but has been mentioned in the community.

Most neurosurgeons leave a large amount of tubing curled up in the abdomen when treating children (Nicholas's did for this exact reason) so that as the child grows, the tubing can stretch and revisions (more brain surgery) are not necessary as long as the shunt continues to function properly. I have been told that as the child grows, it is typical to feel some tightening or tugging as the shunt tubing breaks loose of adhesions under the skin that were formerly created and lengthen under the skin. I imagine that must be fairly uncomfortable.

Weather is a big one. Most surgeons will tell you that weather has very little to do with the pressure inside the head, but almost every single person I've talked to who has hydrocephalus and is treated with a shunt has said that when the weather changes, they get headaches. It's apparently a big debate within the hydrocephalus community. We have seen it first hand with Nicholas. If a big storm is rolling in, he becomes very uncomfortable and cries. If we give him Tylenol, it seems to relieve and relax him. I've been told by my co-worker with hydro that if it's very hot, she gets headaches. She has found that wearing hats helps to reduce the headaches.


Abdominal discomfort is another common complaint. It seems that the CSF draining into the abdominal cavity creates acid reflux in a significant number of hydrocephalus patients.

While not every person who has a shunt experiences all of these, these complaints come up time and again. And again, every person I talked to said that this is clearly preferable to living with hydrocephalus untreated and obviously better than facing death so they take their side effects with a grain of salt, some ibuprofen, and maybe some Tums.

The Kindness of Strangers

Last week we went on a trip to my home state for my sister's wedding (eek can't believe she's married!). We were understandably nervous about the air travel for said trip - it was the first time for the twins on a plane and we were not sure what the pressure changes would do for Nicholas's head and shunt. We were also traveling to a higher altitude than we normally are at. We consulted with Nicholas's neurosurgeon who told us that because we control the pressure in Nicholas's head with a mechanical tool, it was highly likely that he would fare better than the rest of us as we acclimated to the different pressures. That was a relief! Mike collected physician notes from Nicholas's pediatrician and neurosurgeon along with copies of his latest CT scan and shunt series and the card that indicates the current pressure his shunt is set at so we could carry it all with us in the event of an emergency trip to the children's hospital that didn't know us. We hoped against hope we wouldn't have to use it (and we didn't end up having to!) but figured better prepared than not.

Mike called TSA to ask for advice on what to do with all the bottles of water, powdered formula, Nicholas's feeding pump, and the medicine that we needed to carry on with us. The TSA agent told Mike to ask for a supervisor upon arrival to security check and that's what we did. A PSS (passenger support specialist) walked through line with us, helped us get everything on the conveyer belt (the stroller didn't fit, so that was walked through and hand checked), walk all the kids through, check out all our "special" stuff and got us on our way. We were through security in less than 15 minutes. It was incredible.

The flight out was running on time and when Mike went up to get the tags to gate check the stroller, it was suggested that we pre-board so that we had more time to get everything set up. We were not allowed to all sit in the same row since we had two lap infants - there are only four oxygen masks per row so someone wouldn't get one. I sat in one row with Emily and Zachary and Mike sat across the aisle holding Nicholas. Emily was fascinated. She watched people board, smiled and flirted at them, and was very calm. Nicholas, on the other hand, was less than thrilled. He ended up fussing most of the trip there. Luckily we were surrounded by parents and they were all very understanding. There was a girl who sat next to Zachary in the window seat and she entertained him the entire trip. She played games on the iPad with him, listened to his stories about a million times, and helped him get his movie set up when he wanted some quiet time. I was amazed. I thanked her profusely and she revealed that she works with children. She is clearly in the right field.

On the way home, we ended up getting to the airport early. We asked at security for a PSS and they looked at us like we had asked for a three headed dog. We explained what had been told to us at our home airport and they said there was no one there like that. We asked for a supervisor and they told us to speak to the gentleman helping the passengers through line. He didn't really understand what our needs were either, but he tried very hard to help. Our things went through, a TSA agent took the bottles filled with water to be checked and when he was done, he just walked away from them while grunting "it's good." We took that to mean we could pack everything back up and nobody stopped us, so I guess we were right. We were still through security fairly quickly but it was a less pleasant and helpful experience.

This flight appeared to be running on time as well, and when we got the tags to gate check the stroller we were again given pre-board access. Zachary had a meltdown when we boarded this time because he wanted to sit by me and we had decided on the way home he would sit by Mike. A gentleman was sitting across the aisle from Mike so I sat in the row behind him with Emily. When both Zachary and Nicholas were crying, the man jumped up from his seat and ran to the back of the plane. Nicholas cried during pretty much the whole boarding process which ended up working out very well for us because nobody sat in their row. I had a woman sit in the window seat, but the middle seat stayed open. The woman winked and said she always sat next to lap infants because the row almost never filled up. She was also incredibly nice and held Emily for me while I strapped in. She talked to Zachary through the break between the seats when he turned around and said hi. She told me that parents get so stressed out when their babies cry but that most people don't care and understand that babies will be babies.

Nicholas ended up calming down once we took flight and actually slept through the entire flight. Emily cuddled up and fell asleep too, and Zachary watched movies and played games through the whole flight. So, the family that boarded like lions ended up having the quietest children on the flight.

All in all it was a very smooth process because of the helpful staff through most of the journey and kind people on the flights. Ironically, we met twins almost everywhere we went. On the flight out, the woman sitting next to Mike had three year old twins, we met a man in the airport with six month old twins, one of the servers at the wedding reception was a twin, and on the way back the woman who sat next to me was a twin. It seems we've joined a very close knit community.