Howdy Hydrocephalus

Understanding my unique gyroscope


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LA Kings support Hydrocephalus Awareness

download (4)I remember seeing an article about how the LA Kings support Hydrocephalus Awareness and Research. Finally I remembered about the article and looked it up.

LA Kings Support Hydrocephalus

It is great to see that some high profile teams are actually supporting this cause. To date three NHL teams have supported the Hydrocephalus Awareness; LA Kings, Anheim Ducks and Washington Capitals. It would be great to see more professional sporting teams support Brain Injury Awareness and Hydrocephalus Awareness. This would be great because any sport head injury can cause a brain injury and if it was severe enough hydrocephalus can also be added to the mix.

To say that Hydrocephalus and Severe Acquired Brain Injury has changed my life dramatically is an understatement. I am fortunate, I do not have a shunt, but I do have an ETV Free Flowing CSF hole that could close and malfunction sending me for another brain surgery. Also my vision has been affected from the Interncranial pressure. I still have issues with my one eye and if there is an increase intercrananial pressure, it can negatively impact my vision considerably.

I am not angry or upset with this new life time journey, but continue to fight daily for small improvements in my life. I always hope that there will be a new medical soloution or strategy that can help make my time here a little better. Whether that be reducing pain, increasing executive functions, visual improvements, increasing energy and controlling my wacky right side which has been getting weird again. For example, I was painting on a picnic table this weekend and my family was sitting around the campsite when all of a sudden my paintbrush flew out of my right hand…and the weird thing is that I am left handed but thought I should try to do some broad painting strokes with my right hand. Then this morning I go to sit down on couch to write this post with open laptop in left hand and contigo coffee mug in right hand. As I sit down, my right hand squeezes the drink button and hot hot coffee continually flies in air as I do not realize my hand is hitting the button all over couch, laptop and my burning my leg.

images (9)All I can say is that Brain Injury and Hydrocephalus is quite the adventure and that more education, awareness and support are needed!

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Chronic Pain & TBI

Chronic Pain is a beast. It is not pain from over doing it at the gym, lifting heavy objects or mountain biking, it is pain that does not respond to over the counter medicines and it is often brushed aside by stating that the pain is “psychological”. And when the pain doesn’t go away or get treated, your life can begin to unravel quite quickly. Sleep, cognitive, concentration, appetite, daily activities are negatively affected when chronic pain is not treated or under control. This then leads to anxiety and depression that only add the nasty mix and do not help in day to day living. Because your energy is now taken up by doing everything in your power to accept and move through the pain. You breathe, continue with limited activities, say affirmations, think positive, try herbal supplements and anything and everything that people suggest to try to find some relief. Until it all becomes too much and then you sink into that pit of despair because all the tools in your tool box no longer work. You question worth, value and place here on earth. You can not handle the feel of clothes on your skin, or even someone touching your. Your body is so inflamed that you are old beyond your years. You do not go out because any activity is no longer easy or fun. Joy and happiness are suck from your soul as you are bone weary with every move. You calculate how many years left and if you have the mental and physical strength to actually continue to be here in this pain every day until die. You start to think of ways out…anything to just get rid of this damn pain.  This cycle will repeat itself until….

You finally find a Doctor who understands that chronic pain is real and begins to treat the pain. There is not a text book type way to treat chronic pain. It is more like experimenting with different treatment options until a positive response is obtained. This approach takes time, patience and sometimes putting up with a lot of side effects from different medicines. 

My chronic pain is two-fold; the 24 hour a day migraine with the added bonus of cluster-like headaches that feel like ice picks through the eye. This pain is never gone but for the most part it is managed. The second part to my chronic pain is my neuropathic pain due to nerve injury or nerve mis-communication and response to pain. This has always been on the right side of my body. It feels like burning fire ants, burning and shooting pain that is continually there. Between my knee and ankle fluctuates from burning to feeling like wood. I have had this for five years and it will always be a part of my life.

However, last November, I went off my Pristiq because I told the Doctor that I was doing well and that I was not depressed so I didn’t need it. So I went off the meds.  Then comes January to March where I begin to lose it all. My Neurogenic pain is not just on my right side, it was on my left side too. My chest felt like it was on fire with the flames flickering upwards to my neck and nose. I was worried. My skin was horrible. The itchyness I had on my arm, chest, legs and back was so bad that I was looking like a meth head with open cuts.

Turns out that my Pristiq was not for depression but for my neurogenic pain. An off label use for it…oh didn’t know that. Thus my brain doctor will continue to see me because she just rocks at figuring out what the hell is wrong with me when no one else gives a shit. Also she prescribed this awesome cream that does not contain steroids but instead lanocain and gabapentin to help topically for my pain. Also endless itching is also from neurogenic pain. The nerves are just all messed up and sending weird signals.

So now my pain is not through the roof. It is not 100% managed yet…still annoying as hell. I really do not like the way my chest feels but I really have no choice but to accept it. I hope we can still find a better management solution. I am looking forward to my June appointment to see what my next trials will be.


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A Mother’s Plea

This is a story I found on the Forbes site and I thought I would re-post. In the United States they have Hydro walks for fundraising and education. I am not too sure what happens here in Canada. Most people look at me with a quizzical look when I say that I have hydrocephalus.

A Mother’s Plea

Heres to hoping to spread the word and find better ways to deal with this condition.

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