Howdy Hydrocephalus

Understanding my unique gyroscope

March is Brain Injury Awareness in The United States

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It has been a very active Brain Injury Awareness month. I have read so many wonderful tweets from fellow survivors and bloggers. I was even asked by Lyrysa Smith about Hydrocephalus. She is a journalist, book author and caregiver to her sister’s ABI after carbon monoxide poisoning.  She read my blog and then messaged me some questions. What an amazing person.

It is always meet such positive advocates. People with TBI and ABI need positive advocates. We also need to have more up to date resources in smaller centres.

I hate how I have to explain what my condition is, what an ETV is and now have to explain that my hydrocephalus gets worse when something is affecting my body to ER doctors. I will voice stronger rather than be put off like I am over reacting. I have a reason to be concerned. When my Hydrocephalus symptoms increase…head pain, pressure, more right side fire ants/tingling; I begin to walk funny again. My right side grasping and coordination start to fail…I can accidentally drop or throw items in my right hand. I also have a hard time understanding people especially when on the phone. My cognitive gets worse too. My short term memory is really bad normally and it takes and extreme amount of effort and time to move items from short term to working memory to long term memory even gets worse. My perception begins to change and the world can begin to get all swirly again and off balance again. 

These symptoms are the only symptoms I have to go on if there is issues with my Hydrocephalus. I do not know when I go into the ER if my ETV hole is partially plugged and flow is disrupted or anything other. I am told to go the the ER by all my Doctors in Calgary when I experience these symptoms. But When go to the ER here in Medicine Hat. I am shoved off into the cubicle B of less serious cold, flu & malingerer section and made to wait. (I don’t mind waiting as I know people come in with serious conditions but my can go sideways quickly and being blown off all the time is not cool). By the way the same one where I sat with Stephens Johnson’s Syndrome all blistered, bloodied mouth and peeling skin) as triage didn’t think I was serious when in fact I was being poisoned by my Meds and burning from the inside out. (PPL make mistakes and that nurse made a huge one. I still have rash and skin issues to date). 

I dislike that when you have a life-long condition and that you are made to feel you are wasting the medical system, hospital system, tax payers money when I go into the ER. No my condition never gave me a huge fever and my blood pressure would always read 120/80 (which is high for me but they always ignore that with a polite tight lipped sneer of someone who fully believes they are more qualified to know my body better than me) even before my brain surgery and definitely not after. Only once was my blood pressure at 170 or higher and they stick couldn’t figure out what was going on…infection…partial blockage. No on really knows…most likely me panicking because I couldn’t stand. 

 It is not like I go in on a whim. By the time I voice my conditions to my hubby I have thought long and hard if they are serious, is it just me over reacting etc….By the time I mention to my hubby, he will usually say it is better to waste your time in the ER and find out rather than sit and wait and maybe have things get worse quickly. He always asks if we should drive to Calgary and get the on-call neurologist. I always say no, that it is too much of a drive.  I dislike that knowledge level is not that good here. I dislike that I am going to explain more and more at the hospital. And then for them to say…it is not the hydrocephalus…it is my sinuses, anxiety, in my head, i am faking. Why put me on the defensive. Do you realize how much that hurts to me mentally especially when I am so much in pain and on the last rungs of hope. But when in fact they symptoms are my Hydrocephalus increasing because my body is fighting something. My neurosurgeon explained that Hydrocephalus symptoms will increase when there is something going on in my body. That my hydrocephalus baseline should return once what ever is going wrong in my body has been addressed.

So far I am three months of feeling off and I am not any better. The regular doctor gave me nose spray, I am taking allergy pills and I am now debating to go back to my Dr. Office and be a stronger advocate. The last time, the Dr. I saw thought I was a little aggressive. Hell yes! I am sick of not being heard. Sick of no solutions. Sick that they experts keep pawning me off saying not me…and saying I need to see someone else but no indication that a referral has been made. I am sick of the same cycle of treatment I had before my surgery five years ago. It is like they want you to fall through the cracks.

Why don’t  the Doctors and nurses just say…well your hydrocephalus symptoms are worse and that is an indicator that something is wrong in your body. Let’s figure it out so you can feel better. But no none of that. Oh hell no…no patient care…more like lets see if we can get her to go away. Truly our system is broken when you have to be a broken wheel, act like you are in severe traumatic pain (I don’t I get quieter and quieter as I focus on mindful meditative breathing and imagery) to be seen quicker and to be taken more seriously.

Thank goodness I have an appointment with the brain injury clinic in Calgary in April.  I know my Doctor there will listen to me. I am counting the days to actually be heard. Why is it that the brain injury clinic, endocrinology clinics and neurology clinics in Calgary take the time to really listen and find solutions. Why is there no out of the box thinking here in Med Hat? suggestions…the “let’s try this” type of approach. I mean really it does not take that much time to sit down and brain storm ideas. To verbally communicate, visually communicate with pictures from the computer. To take a risk and try something new.  

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2 thoughts on “March is Brain Injury Awareness in The United States

  1. I was diagnosed with hydrocephalus at age 8. Despite the doctors prognosis that i wouldn’t learn at the level of my peers or be able to compete physically, I overcame several deficits. My symptoms were so devastating that I lost my ability to walk. And although science changed the technology that is currently in place, my deficiencies as an adult, far outweigh what they were when I was younger. I’ll be 40 this year. And the feelings of ineptitude that never entered my mind as a kid, because I was able to do what every kid was able to do; with the exception of playing football, have severely affected me as a husband and father. I feel as if my kids, now teenagers, dont look at me as disabled. They see me as angry, lazy and dare i say inept. Before being terminated from my last 3 jobs due moreso to memory issues than ineptitude, i was heroic to them. My family was proud of what I was able to overcome! I spend alot of time now, trying to figure out what to do with myself. But my condition wont allow me to think beyond this house. Ive had 14 revisions in 30 years. Due to that, im high risk to any employer. I’m a great cook! And because of technological advances, ie the internet, which runs the world, my mind/ brain, what’s left of it anyway, does not allow me to compete in an adult world. 😂

    • You keep being strong and trying. Don’t give up trying!!! I know it seems hard especially on those bad days but you can pull through it and start fresh the next day

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