Howdy Hydrocephalus

Understanding my unique gyroscope

Hear Me Roar

3 Comments

I have had some great feedback about my last post. I would like to clarify a few things. I understand that our local healthcare professionals are doing the best that they can. I have generally been so happy with the care my son, W, has received everytime we have to make an appearance at the local ER because his asthma decides to act up. I just feel that I fell through the cracks and it frustrates me to no end.
I am still a little angry because from the first CT scan where the doctor’s in the ER noticed my enlarged ventricles and said to me “looks like you have had them from birth. It is your sinuses causing you issues”. I went into the ER three times because during physical activity I had massive headaches then a trickle of fluid from my nose. Once again the Doctors said “It was your sinuses”. I questioned if it could be CSF. The response was “No. Without a head injury CSF will not drain outside your body”. No one once looked to see if it was intercranial hypertension where CSF can drain from your nose.

I waited politely for four months to see a local neurologist whos says that “most likely the issues are sinuses but you do have enlarged venticles so I will refer you to the Hydrocephalus clinic, but I really think it is your sinuses”. Then I saw the ENT and he saw me and his diagnosis was “there is nothing wrong with your sinuses. The symptoms you are experiencing are neurological”.  Dilema – am I going crazing of having some sort of crisis.  I am turning 40 this year.

Since everyone, my GP, Neurologist, and ENT say everything is fine I decide to do the MHC Rattler Run.  I know I can easily do the 3km so I sign up.  On the day of the race there is snow on the ground.  I decide to wear more than what I normally would because it is only 3km that I will be running.  So I am running and almost done when I can’t feel below my right knee.  My right side of my face goes further number rather than just a small patch, it is almost the entire right side.  I come in third and have to wait for medals.  I am kinda in a daze.  I am scared to go to the ER because of my previous encounters so I go to walk-in.  The doctor does an assessment – I have my eyes closed & and I fall to the right.  WTF what alien took my body. He tells me if symptoms get worse go to the ER.

I book an appt. with my GP.  I tell him “I do not want another CT as I have over 800 days of extra radiation in the last six months.  The same scans are not telling you anything”.  He says “I will be waiting for months for an MRI”.  I end up saying “that I will go to Calgary and pay for one”.  So I went to Calgary two days later and had a head & neck MRI.   Yay no stroke or cartoid separation and yes enlarge ventricles.  I send the images to the Hydrocephalus clinic and we get a call in June booking us an appt for when I am on vacation.  With a little re-scheduling I get in July 25.

So the running caused a lot of pressure that created my gait to get worse quicker.  My right sided weakness and tingling can also be symptoms as well made worse because of the run.  So for the moment I am not allowed to run.  I can do some activities as long as the pressure doesn’t get too great on the head.  It is up to my discretion to set my own limits.  I find this hard to do as I am a person who always pushed herself.

So I may sound like a cranky bear, but really I am just letting it go by venting.  So breath, move forward and all is good!

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3 thoughts on “Hear Me Roar

  1. You have every right to be frustrated and critical of the care you received. It is only by hearing about stories such as yours that some of these huge gaps in healthcare can be addressed. There IS a problem with Health Care here in Medicine Hat and it is not being addressed. i am so glad that you finally know what you are dealing with and can begin the road to recovery. Thank goodness you are a tenacious, smart, determined fighter!

    • Thanks Nikki for your kind comments. It feels great to blog again. This helps me to sort through all the information that has been thrown at me so I can make sense of it all.

  2. Hello. Thank you for blogging and sharing as you do. I am a 51 year old female who was diagnosed with hydrocephalus this spring (5/2014) and I am currently recovering from an ETV earlier this month (8/2014). I live in the US. I hesitated to bring my early symptoms to the doctor precisely because I was pretty sure I would be given a long course of anti-infammatories and an encouraging (read condesencing) word STAT, and then sent on my way. I rather suspected that there would eventually be inconclusive studies of my transiently numb arm and leg, a mental health referral and even more encouraging words. But I can’t put it all on the doctor, I was otherwise a healthy, active functioning female who was actively and creatively denying an entire constellation of odd, disparate symptoms . “How am I going to explain this?” “Must be late onset allergies” “Wow. 50’s a botch” “Must be peri-menopause, menopaue, hormones” “It doesn’t bleed, it doesn’t hurt and I haven’t dropped anything” It took a cerebral episode to get me to the ER on a holiday weekend. To a layperson, it felt like a seizure – but whatever it was the diagnoses followed and eventually the procedure. I have been trying to catch up with it and the sequelae ever since. I suspect your blog will be soothing and helpful. Thank you again.

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