Frequently Asked Questions
What is hydrocephalus?
Hydrocephalus is an abnormal accumulation of cerebral spinal fluid (CSF) in the cavities of the brain called ventricles. It can be caused by many different reasons, and affects over one million people in the United States. One to two babies in every 1,000 births in the US will be affected by hydrocephalus, and it also affects a great number of elderly people. There is no cure for hydrocephalus, there are only treatments, and they are all surgical. Some patients only have one or two surgeries in their lifetime, but many, like myself, are plagued by repeated surgeries to maintain the shunt systems that are required to manage our hydrocephalus. A shunt is an implanted device that diverts the excess CSF from the brain to another area in your body where it can be absorbed (mine is a VP shunt). For more information, see the Resources page for a link to the Hydrocephalus Association website.
What age were you diagnosed with hydrocephalus?
I was seventeen. My hydrocephalus is the result of aqueductal stenosis between the third and fourth ventricles. It is unknown if my hydrocephalus was congenital, but I had no symptoms or indications of it until my late teens. The symptoms that led to the discovery were chronic headache, and intermittent numbness in my face. See “My Story” for more details on my diagnosis and history.
Do you have a shunt?
Yes. I currently have a programmable Codman Hakim shunt valve.
Have you ever had an ETV?
Yes. I had an ETV when I was 19 years old, after 3 failed shunt surgeries. After healing from the ETV, I went 11 years without surgery, before I eventually needed a shunt again. See “My Story” for more information on my surgical history.
Do you suffer from headaches?
Yes. I have chronic daily headaches. I can hardly remember a day without a headache - even when I am doing well. I work hard to not let the daily headaches interfere with my daily life. See “Hydro Treatments & Therapies” for more information on my treatment plan.
Do you work?
Yes. I love my job. I work for my parent’s construction firm as a project manager/designer. The best part of my job are the guys I work with, and providing our clients with comforting, beautiful spaces to enjoy their lives in. It’s very rewarding, and ultimately motivates me to overcome the chronic pain issues and press on.
How do you know that your shunt is failing?
For me, a simple headache is not a sign that we are having issues, since I have a headache every day. The true signs that we are having an issue are that I lose various forms of functioning… I am not able to get to work or make it through a full day due to fatigue, my output in the gym changes, the muscles in my skull feel different or feel like I have a temperature, etc. I explain it like a computer with a virus… I can usually still perform the tasks I need to, but they take longer and take much more effort. I also know that the look of my eyes changes when my shunt is not working properly. I rely almost fully on the people in my inner circle of care to track all of these changes, and alert me to patterns of concern. This simply could be my trainer noticing that I was unable to complete a full strength workout a few days in a row, or my PT noticing that my head doesn’t feel the same during treatment. Sometimes I am so busy fighting through each day, that I don’t see the patterns. My neurosurgeon knows me so well at this point, that he can usually tell just by looking at me. And lastly… it’s never the same. Hydrocephalus is such a moving target. Every single episode in every single patient is different — and you should NEVER wait if you suspect an issue. Full communication with your medical team is a must. Figure out what your normal checkpoints will be if you suspect something, and diligently go through every single one, when you don’t feel right. Your life depends on it.
How long does it take to fully recover from shunt surgery?
Again, this is something that is different for every single patient, each time. The only thing I can tell you is that I have found that the more physically active I can stay in between episodes, the easier the surgeries have been. I believe that this is both from a physical and mental standpoint. On average, for me, the full recovery process takes about 6-8 weeks. I journal each recovery, and keep track of little things that we try that seem to help the process. I'm determined that if I have to keep having brain surgery, I'm going to get better at it every time.
What is the most important part of your success with hydrocephalus?
I always tell people that the #1 priority should always be to put together a team of physicians that you like, and that you feel like you can communicate with. Figure out what your specific needs are as a patient, and work diligently to find physicians who you can work with. Then, let them do their job!! You have to trust your team, fully, even when it’s hard. I have done this, over the course of a number of years. I can honestly say that I am confident in every single member of our team, that they know me and they know my case, and they are good human beings. This is the most important thing for me, and allows me to ride the roller coaster with the knowledge that there is a huge safety net below.
Hydrocephalus is an abnormal accumulation of cerebral spinal fluid (CSF) in the cavities of the brain called ventricles. It can be caused by many different reasons, and affects over one million people in the United States. One to two babies in every 1,000 births in the US will be affected by hydrocephalus, and it also affects a great number of elderly people. There is no cure for hydrocephalus, there are only treatments, and they are all surgical. Some patients only have one or two surgeries in their lifetime, but many, like myself, are plagued by repeated surgeries to maintain the shunt systems that are required to manage our hydrocephalus. A shunt is an implanted device that diverts the excess CSF from the brain to another area in your body where it can be absorbed (mine is a VP shunt). For more information, see the Resources page for a link to the Hydrocephalus Association website.
What age were you diagnosed with hydrocephalus?
I was seventeen. My hydrocephalus is the result of aqueductal stenosis between the third and fourth ventricles. It is unknown if my hydrocephalus was congenital, but I had no symptoms or indications of it until my late teens. The symptoms that led to the discovery were chronic headache, and intermittent numbness in my face. See “My Story” for more details on my diagnosis and history.
Do you have a shunt?
Yes. I currently have a programmable Codman Hakim shunt valve.
Have you ever had an ETV?
Yes. I had an ETV when I was 19 years old, after 3 failed shunt surgeries. After healing from the ETV, I went 11 years without surgery, before I eventually needed a shunt again. See “My Story” for more information on my surgical history.
Do you suffer from headaches?
Yes. I have chronic daily headaches. I can hardly remember a day without a headache - even when I am doing well. I work hard to not let the daily headaches interfere with my daily life. See “Hydro Treatments & Therapies” for more information on my treatment plan.
Do you work?
Yes. I love my job. I work for my parent’s construction firm as a project manager/designer. The best part of my job are the guys I work with, and providing our clients with comforting, beautiful spaces to enjoy their lives in. It’s very rewarding, and ultimately motivates me to overcome the chronic pain issues and press on.
How do you know that your shunt is failing?
For me, a simple headache is not a sign that we are having issues, since I have a headache every day. The true signs that we are having an issue are that I lose various forms of functioning… I am not able to get to work or make it through a full day due to fatigue, my output in the gym changes, the muscles in my skull feel different or feel like I have a temperature, etc. I explain it like a computer with a virus… I can usually still perform the tasks I need to, but they take longer and take much more effort. I also know that the look of my eyes changes when my shunt is not working properly. I rely almost fully on the people in my inner circle of care to track all of these changes, and alert me to patterns of concern. This simply could be my trainer noticing that I was unable to complete a full strength workout a few days in a row, or my PT noticing that my head doesn’t feel the same during treatment. Sometimes I am so busy fighting through each day, that I don’t see the patterns. My neurosurgeon knows me so well at this point, that he can usually tell just by looking at me. And lastly… it’s never the same. Hydrocephalus is such a moving target. Every single episode in every single patient is different — and you should NEVER wait if you suspect an issue. Full communication with your medical team is a must. Figure out what your normal checkpoints will be if you suspect something, and diligently go through every single one, when you don’t feel right. Your life depends on it.
How long does it take to fully recover from shunt surgery?
Again, this is something that is different for every single patient, each time. The only thing I can tell you is that I have found that the more physically active I can stay in between episodes, the easier the surgeries have been. I believe that this is both from a physical and mental standpoint. On average, for me, the full recovery process takes about 6-8 weeks. I journal each recovery, and keep track of little things that we try that seem to help the process. I'm determined that if I have to keep having brain surgery, I'm going to get better at it every time.
What is the most important part of your success with hydrocephalus?
I always tell people that the #1 priority should always be to put together a team of physicians that you like, and that you feel like you can communicate with. Figure out what your specific needs are as a patient, and work diligently to find physicians who you can work with. Then, let them do their job!! You have to trust your team, fully, even when it’s hard. I have done this, over the course of a number of years. I can honestly say that I am confident in every single member of our team, that they know me and they know my case, and they are good human beings. This is the most important thing for me, and allows me to ride the roller coaster with the knowledge that there is a huge safety net below.
Disclaimer:
I am not a doctor, or any type of medical professional. This is not meant in any way to be medical advice; it is simply my own account of what we have found to be beneficial for me. We hope that this will give you some inspiration or ideas to get started with, or provide you with comfort that you are not alone - you see how much work this is, and how much effort I have to put into being as functional as I am blessed to be. It's truly the relentless pursuit.
I get lots of questions regarding specifics of medications, etc. via social media, and I am not able to share that information. All of my medications, pain management, and general care, is monitored closely by my primary care physician, at monthly appointments.
I am not a doctor, or any type of medical professional. This is not meant in any way to be medical advice; it is simply my own account of what we have found to be beneficial for me. We hope that this will give you some inspiration or ideas to get started with, or provide you with comfort that you are not alone - you see how much work this is, and how much effort I have to put into being as functional as I am blessed to be. It's truly the relentless pursuit.
I get lots of questions regarding specifics of medications, etc. via social media, and I am not able to share that information. All of my medications, pain management, and general care, is monitored closely by my primary care physician, at monthly appointments.
