Realities Of Living With Hydrocephalus

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If you don’t already know September is Hydrocephalus Awareness Month! If you don’t already know I live with a neurological condition called Hydrocephalus which is when there is an abnormal buildup of cerebrospinal fluid in the brain that usually would protect the brain, and everyone has it but when there is too much it puts extra pressure on your brain that will kill you if left untreated. There is no cure for Hydrocephalus and the most common treatment is to have a shunt put into your head that will drain excess fluid to other parts of the body. A shunt saves a lot of lives but it does not cure Hydrocephalus and you can still experience a lot of headaches and seizures because of this condition. Hydrocephalus affects about eighty percent of people with Spina Bifida, but you don’t need to have my disability to be impacted my Hydrocephalus and it can happen to anyone. People with Hydrocephalus can lead normal lives but because of this condition sometimes you may struggle with things that someone without Hydrocephalus wouldn’t struggle with. In this post, I am going to talk about some realities of living with Hydrocephalus that you may not know about if you didn’t have this condition.

I have to visit my neurosurgeon every time I have an MRI- Whenever a doctor orders a test, I pray that it’s not an MRI because whenever I have that test, I have to visit my neurosurgeon within twenty-four hours to have my shunt reset. My shunt is magnetic which means that an MRI machine or any type of magnet can throw my shunt setting off that needs to be reset as soon as because if you are walking around with the wrong setting it can cause an avoidable health issue. Surgery is not usually required to change my shunt setting and all a doctor has to do to change the setting is put a special magnetic to my head, but it can be a pain to have to go to the doctor to have an adjustment that literally takes thirty seconds. A patient or MRI tech does not have access to these special magnets, and it needs to be reset by a doctor or physician’s assistant that has been trained on how to use it. An MRI is sometimes necessary to accurately diagnose some medical problems, but I roll my eyes every time my doctor orders one because I not only have to be in the machine for an hour or so but when I am done, I have to make an extra doctor appointment. I think it would save patients a lot of time if they would train MRI techs to reset a shunt, but I am assuming they don’t do that for liability.

I sometimes get ringing in my ears- If you ever me quickly put my hands over my ears it’s probably because I suddenly ringing in my ears. that can be quite loud and sometimes a little painful. I started experiencing ringing in my ears when I developed chronic migraine a few years ago and I am not totally sure Hydrocephalus is to blame but I do think it’s a serious possibility. I have not always had ringing in my ears, and it started shortly after I had shunt surgery, and I wouldn’t be surprised if it was connected to my Hydrocephalus. If you have Hydrocephalus, do you have ringing in your ears or is this only something only I experience?

I am more sensitive to loud noises- People with Hydrocephalus often are more sensitive to loud noises and often find loud or high-pitched noises very difficult to tolerate because it sound different to us. When I was a child the popping of a balloon terrified me because it sounds louder to me than it would for someone without Hydrocephalus and to still to this day, I hate going to birthday parties where there will be balloons and will not think it’s funny of you come up behind me and pop anything that’s going to be really loud but I might actually scream at you if you do that.

Your head is a little bit larger-I am not trying to offend anyone by saying that people with Hydrocephalus have a big head because I would be making fun of myself, and I am only stating a fact that people with Hydrocephalus do have a slightly larger head due to the excess fluid.

Massages are very painful– Some people find massages relaxing but for me it’s the complete opposite of relaxing and if I want to give myself an incredible amount of pain, I’d get a massage. I will never get a massage because not only do I not like them, but I have shunt tubing in my neck, and it can be dangerous if you don’t know what you are doing. If my neck is tense, I sometimes will give myself a massage because I know my limits but if someone else tries to massage me, I would immediately stop them. I will not pay for a massage and the only time I may consider getting one is if I knew that person had knowledge in Hydrocephalus and even then, I probably would be hesitant because massages are not as enjoyable for me. I use to get massages from my occupational therapist who had knowledge in Hydrocephalus because I had a lot of neck tension that made my migraine pain worse and although it felt good after the fact, I hated every minute of it.

Sometimes I get horrible neck pain- Neck pain is sometimes caused by a workout but when have Hydrocephalus neck pain isn’t always from weightlifting and sometimes something in your shunt tubing gets a clog. A clog is not serious and should go away on its own withing a few days, but until it does it can cause an incredible amount of neck pain and you can’t turn your head. It can be difficult to know when your neck pain is the result of a workout or a clog because these feeling feel very similar to each other, It’s important that you pay attention to how long you have had neck pain because if it doesn’t improve everyday it’s worth getting looked at.

Hydrocephalus is an invisible disability and although you can still lead a normal life it does come without challenges Some people with Hydrocephalus may not experience the same types of things I do because some people may have a different type of shunt and then me and not everyone will have chronic migraine. I experience a lot of pain because of Hydrocephalus but I am only one individual living and it’s not a one-size fits all disability because Hydrocephalus affects everyone differently. Chronic pain can impact some people with Hydrocephalus but not everyone with Hydrocephalus will have chronic pain and I didn’t start experiencing chronic pain until I was in early to mid-twenties. When you live with Hydrocephalus or any disability you may experience some of the same symptoms as I do but you might not, and I am only sharing my experiences as one disabled woman and I do not speak for everyone with Hydrocephalus. There are a lot of things that I experience because of Hydrocephalus, and I have not listed them all. If you live with Hydrocephalus, please comment below and let me know what you experience to help others feel less alone!

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