Category Archives: Medical

Hydrocephalus

Hydrocephalus – A subject that is near and dear to me……I was not born with it.

Hydrocephalus is a topic of discussion that hits close to home for me as I was diagnosed in my early twenties after acquiring the chicken box virus from my 4-year-old son. I never had chicken pox as a child. This whole diagnosis has been a mystery to me for quite sometime until recently when I was able to uncover some answers. It has been a very long frustrating battle as it has caused difficulties that have affected me most of my life. First off young and middle-aged individuals with hydrocephalus is not the same as Normal Pressure Hydrocephalus which affects the elderly nor is it the same as the kind that infants are born with. When young adults or middle-aged people acquire it the term they give it is called “SHYMA” (Syndrome of Hydrocephalus in young and middle-aged adults). 

Individuals with SHYMA remains poorly described in any medical documentation that I have been able to find during my research which I have been conducting for over ten years. I also came to the conclusion that most are not diagnosed and not treated. Most find out they have it due to other reasons that required a CAT SCAN. So basically the symptoms are treated under another inaccurate diagnosis.
http://www.ncbi.nlm.nih.gov/pubmed/15978182

Which leads me to my journey. 
I was rushed to a level one trauma center with a very high fever, loss of vision, and the worse migraine I had every experienced accompanied by weakness and fatigue. This was two weeks after my 4-year-old son acquired the chicken pox from daycare. After having a spinal tap, and numerous scans of my brain, I was admitted to the Neuro Intensive Care Unit.  During the next few days there were no changes and my mother continuously asked the doctors if this all could be from exposure to the chicken pox virus and my husband and my mother were constantly told no. What they were told is that I had hydrocephalus. Which was most likely caused from a trauma or I was born with it and it was never detected. During this time I was kept sedated because of the extreme pain from the inter-cranial pressure from the fluid increase. The doctors informed my family that I would need a shunt surgically implanted in the morning and that would be the only option or I would continue to deteriorate. The following morning before the procedure they were bringing me down to CAT SCAN for yet another scan to check the fluid levels and I broke out in what I thought were hives and nurse advised me that they were indeed CHICKEN POX!!! Okay so I contaminated the entire NEURO ICU with chicken pox. Which was very upsetting to both my mother and my husband because they kept asking the doctors about that being the case. So I was treated for chicken pox and sent home. No shunt needed……YEAH RIGHT.

Well the headaches never went away every. Every day I live with a headache in one form or another.Year went by and life went on and we never heard about hydrocephalus again. The doctors assumed it was all caused from the chicken pox virus.

So life goes on a few years and BAM!!! I had been working as an ER Technician and while at work I started feeling funny. I got this metallic taste in my mouth and this weird feeling of deja vu. Then BAM there is a bunch of nurses above me asking if I was okay. Apparently I had a syncope episode which has never happened before. Meanwhile I work in the ER and they don’t even look at my head or anything just send me home. Well When I get home I have this huge knot on the front of my head so my significant other rushes me back to hospital because he feels they should have done a cat scan. Well I should have never went back to the hospital I worked at. The CAT SCAN showed non-communicating hydrocephalus again as well as them telling me I had a massive concussion. I was not allowed to return to work until I got clearance from a neurologist. Off to the brain doctor we go again.

After yet another brain scan and a EEG, it is determined that I not only have hydrocephalus but I have temporal lobe epilepsy as well. Due to the fact that I have had hydrocephalus for many years at this point a shunt would not reverse any of my symptoms. To understand the what was happening to me, my mom and I sat down and went over my child hood and realized some things……..

Apparently I had been in a car accident prone my whole life, I also was quite a day dreamer. I also had cognitive issues that did not become noticeable until much later when we were putting all the pieces together. Through out my childhood I received special education and had learning difficulties.

So the symptoms of hydrocephalus in young and middle adults I would say are migraines, cognitive delays, balance issues. Without early treatment symptoms progress and simple things in life get more difficult and it gets very hard to complete tasks and maintain employment because of the cognitive deficits. The cognitive difficulties that I had growing up were very similar to someone with severe ADD. I fall constantly. Throughout my life I have always been that person that has to have a to do list or gets off track.The doctors now believe that a car accident that I was in when I was five is the reason for the hydrocephalus. I went through the back window and ended of with a bruised brain. The neurologist I see now concludes that traumatic brain injuries are a major cause of SHYMA. Also my daydreaming was most likely absent seizures. Luckily for me I have never experienced a grand mal seizure.To date I have never had a shunt put in because it can’t reverse the damage. Also note I have always had difficulties keeping on track and keeping interest in anything for any long length of time. I have changed my career a few times because of it. When you have SHYMA life is far from normal.

I am not looking for sympathy I just want to raise awareness to this lifelong illness. It is very frustrating to be the person that has this illness and all of the material out there is based on normal pressure or infant hydrocephalus. More awareness and more research is definitely needed. Currently I am undergoing Neuro Cognitive Testing and Therapy to see what more they discover has been effected. One symptom that I have had for as long as I can remember is that I am very difficult to wake up and I go into a very deep sleep where I don’t hear anything including a fire alarm.

symptoms of SHYMA is as follows according to the link below.
Headache, difficulty in remaining awake or waking up, loss of coordination or balance, bladder control problems, impaired vision, and cognitive skills that may affect job performance and personal skills.

http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Hydrocephalus.aspx

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