September is Hydrocephalus Awareness Month. I live with a condition called Hydrocephalus, which is a neurological disorder that happens when there is an abnormal buildup of cerebrospinal fluid deep within the brain. This fluid usually helps cushion your brain, but when there is too much, it puts pressure on your brain and is fatal if left untreated. Many people with Spina Bifida have Hydrocephalus, but you don’t need to have my disability to get Hydrocephalus, and it can happen to anyone. People with Hydrocephalus can live well, but there is no cure, and the most common treatment is to have a shunt put in your head that will drain the extra fluid to other parts of your body. I have had Hydrocephalus since I was a baby and am grateful that my shunt has kept me alive, but it’s not always easy because you deal with challenges that someone without Hydrocephalus wouldn’t experience. In this post, I am going to share some realities of living with Hydrocephalus that you might not know if you didn’t have this condition.
When I get an MRI, my shunt needs to get reprogrammed- Most people that I know who are shunted have a magnetic shunt because it allows doctors to reprogram your shunt without having to do surgery. You have to be careful because magnets can throw off your shunt setting, and it is so important that your shunt stays at the right setting. I will get an MRI if that is the only test that will give my doctor answers, but I roll my eyes every time I need to have one because it is an all-day event. Most people don’t like to get an MRI because it’s a long test, but when you have Hydrocephalus, and have a magnet shunt, you hate it even more. When I have an MRI, I can’t just leave when I am done and go home, but I also have to stop at my neurosurgeon’s office within twenty-four hours to get my shunt reprogrammed. The magnet in the MRI machine often throws it off, and if you don’t get an adjustment, you run the risk of causing an avoidable shunt problem.
I can’t fly– Activities where the pressure might change can sometimes be a problem for people with Hydrocephalus and there are certain activities, such as skydiving, that we are told not to do. When I travel, I very rarely will get on a plane and fly because often the pressure changes cause seizures that are much more intense than what I would normally experience. If I am traveling within the United States and I am going somewhere that I know has good hospitals, I might get on a plane. I won’t usually travel to a foreign country that is not familiar with my disability because there are too many risks associated with that. Flying is a trigger for my shunt, but not everyone with Hydrocephalus is unable to fly, and some people might not have any problems with getting on a plane because everyone has different triggers. It is annoying that I can’t fly and I wish I could, but my shunt just can’t handle it.
You are at a higher risk for epilepsy– Seizures can happen to anyone, but people with Hydrocephalus are at a higher risk than people without Hydrocephalus. My seizures have calmed down, and I am currently seizure-free and don’t need to take seizure medication anymore unless I start to have problems again, but I do have a history of seizures. I was on medication for several years to treat them until I started experiencing side effects, and my doctor took me off of them because I wasn’t having seizures and there was no reason for me to be on them. Some people with Hydrocephalus will not have epilepsy, but you are at a slightly higher risk, and it’s not unusual for someone with Hydrocephalus to develop epilepsy. People with Hydrocephalus are at a slightly higher risk for seizures, and you should get to a neurologist immediately if you think you’ve had one because seizures can cause brain damage if left untreated. I am grateful that I am not having seizures, but I do hate that my disability makes me more prone to them.
You are more prone to headaches- Migraine and headache disorders often are genetic and if you have someone in your family who lives with migraine disease, it is more likely that you could develop a headache disorder. I live with chronic migraine that I manage with medication, but my frequent migraine attacks have nothing to do with genetics because people with Hydrocephalus are more prone to headache disorders and there is nothing you can do to change that. Most of my life, I did not have a problem with headaches, and that is something that has happened within the last few years, and not everyone is going to struggle with frequent head pain. It is important that you get your shunt checked if you start getting headaches because although unbearable head pain can be a migraine disorder, it can also be a sign of a shunt malfunction, which needs immediate treatment. Hydrocephalus isn’t the only reason I am prone to headaches, and I also have Chiari malformation, which also contributes to my frequent headaches, but it doesn’t make it any less annoying. Accepting the reality that I will always be prone to headaches and there is nothing I can do to completely prevent them is one of the most frustrating things about Hydrocephalus.
Sometimes I get unbearable neck pain- My shunt tubing is in my neck, and sometimes I will have a clog, which is not dangerous and usually resolves itself within a few days. It can be very painful, and when it happens, I have severe neck pain and can’t turn my head for a few days. High-intensity exercise that puts a lot of pressure on your neck can trigger it, but you have to exercise for it to happen.
Your head is slightly larger– When you have Hydrocephalus, your head is slightly larger than someone without Hydrocephalus because the extra fluid makes your head a little bit larger. A larger head is not necessarily a bad thing unless you are looking for a hat and are struggling to find one, and it’s just a reality of living with Hydrocephalus that you can’t change.
Learning disabilities are common- Some people with Hydrocephalus might not have a learning disability, but it is common for people with Hydrocephalus to have learning disabilities because the pressure can damage brain tissue and cause developmental delay. I have a learning disability and have always struggled with school, but you can teach someone with Hydrocephalus new things, and it just may take a little longer and require more patience.
When you have Hydrocephalus, there are a lot of things that are frustrating, but because of medical advancements, it is a manageable condition, and you can thrive while living with Hydrocephalus. Some people with Hydrocephalus experience a lot of chronic pain, but not everyone with Hydrocephalus lives with pain, and only some people do. Hydrocephalus is considered an invisible disability that can affect you in so many ways, but you don’t need visible challenges for your pain to be valid. There is currently no cure for Hydrocephalus, but you should never lose hope because we are always making medical advancements and improving surgeries that improve the lives of people affected by it. Hydrocephalus, amongst many other disabilities, needs more awareness because knowing the signs can save your child’s life. What realities do you wish people understood about living with Hydrocephalus? If you liked this post, please leave a comment below and share it with your friends to help spread awareness.
New posts are shared most Tuesdays and Thursdays. Subscribe to my blog’s email list to be notified when a new post is published. Your information is never shared with anyone, and I will never spam you!
My Rockin Disabled Life 