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September is Pain Awareness and Hydrocephalus Awareness Month! I live with a medical condition called Hydrocephalus which is a neurological condition that caused by abnormal buildup of cerebrospinal fluid in the brain. This fluid usually would protect the brain but when there is too much it puts pressure on the brain and will kill you if left untreated. There is no cure for Hydrocephalus and the most common treatment is to get a shunt put in your head that will drain excess fluid to other parts of the body. Shunts saves lives but it’s a device that is in your head that can stop working at any time and need to be replaced. A shunt is very durable and although some people have more shunt revisions it should last a very long time for a vast majority of people with very little shunt revisions. The most common sign of a possible shunt malfunction is horrible migraine that is so severe you can barely function but when you live with chronic migraine and have severe pain all the time it can be difficult to tell the difference between when your migraine pain is flaring and when it’s a shunt malfunction. Head pain is a common symptom of a shunt problem, but the good news is it’s not the only one and there are other signs if diagnosing a shunt malfunction from head pain alone is difficult. In this post, I am going to talk about questions I ask myself when I have a migraine to that helps me determine is something is a headache disorder a shunt problem.
Does the migraine pain go away– Headache disorders do not happen to everyone with Hydrocephalus but it’s not unusual because people with Hydrocephalus are more prone to headache disorders. I get horrible migraine on a weekly basis that makes it difficult to leave my bed. How do you know when your migraine symptoms are flaring and when you should go to your neurosurgeon? A headache from a shunt problem and a standard migraine are both horrible types of headaches and the main difference is a standard migraine will eventually break but a headache from a shunt malfunction will not until you have it fixed. How long have you had a migraine has it gotten worse? If it’s been more than week of constant pain and there are no signs of getting relief any time soon it might not be a headache disorder and could be a shunt problem that should probably be dealt with. If you are getting horrible migraines and your doctor says nothing is wrong with your shunt it is possible you have a headache disorder, but it can never hurt to get it checked out.
Are you having seizures? – Seizure disorders can happen to anyone but when you have Hydrocephalus you are at a slightly higher risk of develop epilepsy than someone without Hydrocephalus. If you have Hydrocephalus and start having seizures that should be red flag because usually that is not normal and usually means something is wrong. Seizure disorders do not affect everyone with Hydrocephalus but it’s not unusual for it to happen. Before you assume you have seizure disorder and start taking seizure medication for the rest of your life consider the possibility of possible shunt malfunction and go to your neurosurgeon to make sure everything is fine because seizures can happen when your shunt is not working properly.
Is there redness around your shunt site? – I am constantly checking my neck where my shunt tubing is located to see if there are any new lumps or redness that was not there yesterday. Do you have redness or any weird lumps by your shunt? I had a shunt surgery when I was younger that did not take and the very first thing, we noticed was that I had a bubbly lump by my shunt site. Obviously, not everyone will get lumps when their shunt is malfunctioning, but it can happen.
What does the pain feel like? – A migraine disorder and shunt malfunction are both disabling types of headaches, but the feeling of standard migraine and shunt function is slightly different because when your shunt isn’t working it feels more like a pressure headache than pain. What does your pain feel like? Headaches with Hydrocephalus sometimes feel different than they would feel if you didn’t have this condition and you don’t always know if your head pain is something you should be concerned about, but my rule of thumb is if something feels off it can never hurt to go to the doctor because it’s better to be overly cautious than to ignore pain that could potentially be serious. A migraine from a shunt problem can sometimes feel almost identical to a standard migraine but in my experience the pain is different.
Has the frequency changed? – I live with daily headaches and migraine and head pain is not usually red flag for me because I experience them every day. If head pain was my only symptom, it could potentially be a problem because head pain is my norm, and I likely wouldn’t think anything of it. My migraine frequency has not changed in the last few years and certain parts of the year are worse than others, but I try to pay attention to the frequency and overall severity because if my migraine pain gets worse and happens more often it might not be something more medication will be able to fix.
Do you have shortness of breath- My shunt tubing is in my pleural cavity which is close to my lungs and when my shunt is not working properly, I usually will have shortness of breath as one of my first symptoms. Breathing problems is not always a shunt problem, and it also can be symptoms of other medical conditions such as asthma that should also get immediate treatment. Everyone has their shunt tubing in different areas of the body and some people may not experience shortness of breath but if you do it’s worth exploring because even if it’s not a shunt malfunction it could be another medical condition.
When you have Hydrocephalus it’s important that you know the signs of possible shunt malfunction because untreated shunt problems are serious and will kill if left untreated. If you suspect a shunt malfunction and can’t see a doctor for a few days it’s okay because shunt malfunctions don’t kill you immediately, but if you suspect a problem, I wouldn’t delay it for too long. A patient often will have signs of a possible shunt problem, but you can’t self-diagnose a shunt problem and it needs imaging that can only be diagnosed by a doctor. Surgery usually is required when you have a shunt problem but not always and sometimes all you have to do is change the setting and since mine is magnetic all a doctor has to do is put a magnet to my head to change the setting. These are questions I ask myself when I think I may have a possible shunt problem, but everyone is different and it’s not a complete list of all the possible signs because I have not experienced all the possible shunt malfunction symptoms. If you have Hydrocephalus and are experiencing new neurological symptoms do not ignore it because if it is a shunt problem and you wait too long to fixed it could cause permanent brain damage. What do you ask yourself to decide if your head pain is a headache disorder or shunt malfunction?
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