Howdy Hydrocephalus

Understanding my unique gyroscope


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Claustrophobic Tendancies

I became claustrophobic after being shoved in sleeping bag and not let out at a birthday party sleepover.  Those damn parties can be cruel, especially if the birthday girl was forced to invite you because the mom’s were friends. I wish I could go spelunking as it looks  like fun but instead it is hiking or rock climbing. When I was younger my claustrophobic tendancies were worse, but now I can recognize the weird fear building within me.  For example, I can often begin to feel the fear and anxiety in a crowded space.  I  bring myself back under control by breathing.  It is all mind over matter!

When I am signed up to have an MRI, I am still a little apprehensive about the whole thing.  I always given the option  of being put under, but really who really wants that to happen to them.  Last friday I had to go to Foothills Hospital in Calgary, Alberta for my final MRI before they do my surgery.  So I am not so nervous, as I am becoming a veteran at having this test done.

I am given ear plugs – thank you! I lie down on the table, they put a cushion under my legs.  The tech shoves foam pieces around my head and neck to keep me from moving as I let him know that I am a figiter and will do my best to be still. Then the tech reaches for it – the mask!  This is where the feeling of claustrophobia begins to stir.  I know they describe it as a football helmet…but no…it is not. I played tackle football and have worn a helmet.  Tell that story to another female who has not worn one those helmets before. To overcome the fear stirring inside me, I close my eyes.  My eyes will now be closed for the entire test.  Focus on my breathing…Focus damn it, I don’t want to be here any longer than I have to.  Come on it is mind over matter – breathe and think of travelling, the beach…anything. I ask how long this test will be.  The tech answers “25 minutes.”  I shout out “easy peasy as the last test was 1.5 hours long!”

With a lurch the machine moves back and I am in the donut, my own little space capsule. And the concert begins.  There is on large sound repeated by a few shorter higher pitched sounds.  I imagine cartoon aliens having a conversation and I am watching the show with my boys.  I was feeling  good about the test and thought I would slightly open my eyes – Wrong thing to do! I quickly shut my eyes again and calmed myself down by focussing on my breathing.

The mind is a weird thing, I know that I was flat on a table facing up, but I felt like I was moving around – twisting and turn – very strange stuff.  Then the final test comes and it like an emergency siren going off – dong…dong…dong…dong. The ear plugs weren’t really cutting it but now I am imaging hiking and looking out at a beautiful view…a nice beach with blue sky and warm sea breeze on my face.  I know I can do this!  The sounds finally stop and with jump I am actually, not imaginary, moving forward.  The tech comes and takes off my mask right away.  I open my eyes and say “thanks” as I sit up and are ready to jump off the table.  I am told to wait because the table is raised…so the movement may not have been imagined after all!

I survived quite well and I am getting over my claustrophobic fear.  Next time I should try spelunking…easy cave spelunking where I don’t have to wiggle on my belly.

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ultra sound – double edged sword

Ultrasound is a gift at letting you see your baby grow and progress during the pregnancy. Generally a parent-to-be is never concerned about the ultrasound because the pregnancy is normal. However, an ultrasound can also be a double-edged sword letting Doctor’s and parents know of potential concerns that most parents including me never even thought about.

To be told that your soon to be born child may have a potentially life threatening or debilitating issue can send parents into the black abyss of unknown and fear. It only takes a few moments of reading on parent discussion boards, Facebook pages to feel their fear and uncertainty of their future and the future of their families and soon to be born child.

Like a lot of news and televisions shows, the scary gloom and doom pitch is apparent on many of these sites. There are parents who tell their story of their children that have not survived and opted to terminate any male pregnancies after. There are plenty of stories sharing the severe mental and physical disabilities that their child has after they were born. This just adds more emotional fuel to the already tense situation. I don’t recommend reading any of the parent discussion boards or chat rooms, but instead turn to the medical sites or ask your team of medical professionals to provide information and answer your questions.

Basically there is no definite cause for Hydrocephalus but there is some hint that chromosomal and genetic abnormality that may be the cause use unless hydrocephalus developed due to a trauma or external factor such as an infection or spinal bifida.

I know that the first time I was told I had hydrocephalus, an image of a baby with a very head popped into my head. The large head or the rapid onset of a large head is definitely a tell tale sign of hydrocephalus in a newborn or infant.

There are two treatment options for newborns and infants: One is shunting where a tube is placed in the brain. This tube re-directs the CSF into the belly where it is re-absorbed. Endoscopic third ventriculostomy (ETV) can be done as well. Both have very good success at drain CSF and manage hydrocephalus. Babies can be shunted the day of birth or within a few days of being born. A child older than six months old may experience an ETV surgery instead.

Although the there is no cure, the treatment is early, it can be successful. A child may experience a large spectrum of motor or learning challenges but many children can show none of these challenges living a normal lifespan with normal intelligence. The only thing that is required with the treatment is the continued follow-up care to treat any infections, shunt blockages, ETV hole closure or shunt revisions.

The biggest thing is when you leave Children’s Hospital is to educate your GP and local hospital on the symptoms of infection and shunt malfunction. This is where you need to advocate for your child in an over protective parent way. If you suspect something is wrong – there most likely is something wrong.