Howdy Hydrocephalus

Understanding my unique gyroscope


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Limbo

I just love hanging out in limbo especially since I am not supposed to drive.  I have had to rely on wonderful friends, Sara, for getting Wy to school and TKD.  I did drive once to get Wy to a b-day party and boom instant head pain.  I think it is a disconnect between brain and visual reception. We went out for dinner.  I could hear the fajitas sizzling from across the restaurant.  Then there was the grating noise of sweeping of a broken glass at the bar.  It was crazy.  I was wiped after that and had the worst case of insomnia that night.

It has been a hard week. The medication makes me feel really tired and out of it in the morning, but was still waking at night. Following directions, upped meds last night and I did sleep with only fleeting periods of waking but still felt like a truck hit me in the morning.

I have also struggled with feeling down and completely non-motivated.  I think not having the freedom of just getting in the car and going really affected me.  I know that I could take the bus…yup I could…but haven’t talked myself into doing it yet.  It would take two buses to get the boys to school.  Mmmm…still need to work myself up for that one! D & I did go out for walks, even on the cold winter afternoons, but we mostly just hung out and did nothing. I think I played army and baked cookies.

I haven’t been on the computer very much.  Today has been the most and I can feel it already.  Need to get family christmas pics edited, christmas newsletter and some long overdue blog posts done.

I am told that a bed will open up this week.  I really hope a bed opens up quickly so I get everything started.  I will then have a better idea of what I can do or not do at the moment, the reasons for getting tired and maybe some idea what all my newfound quirks are.  I need to have all the assessments to figure out if I can go back to my old job or re-structure a new career path. Having little strategies is what pisses me off the most.  Yes I know I can hang out and be a hermit but really is that productive.  Some days I feel yes that is and others not so much. Here’s hoping getting in this week so I don’t have to be in the hospital for Christamas.

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Driving everyone…

Nope I am not driving everyone mad…or at least no one has said anything to date…or I just haven’t noticed, but instead I drove the car again.  Yay! Independence.  My dad leaves on Tuesday and I need to get everyone around town to school and activities so I am taking the plunge before my post surgery follow-up on October 19th.  It hurt my head the first time I drove to Redcliff, on Wednesday.  There is so much stimulation to take in and focus needed to not get distracted.  Today I drove to Costco and that was better because my head didn’t hurt as much.  I think I will be doing short drives for a bit. I know the brain is working hard when it hurts.

Beware warrior woman is on the loose and there is no stopping her.


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Give Me an E for ETV

There are two options to treat hydrocephalus – shunt placement or Endoscopic Third Ventriculostomy (ETV).  Neither treatment is full proof and can last a lifetime.  Neither treatment makes hydrocephalus go away.  It will always be a part of my life.

Because of my age and having obstructive hydrocephalus, I am a prime candidate for an ETV surgery instead of having a shunt put in my body. A dime-sized hole  will be made in my skull above my forehead (I always joke near old lobotomy locations).  A tiny camera is snaked through my brain until it reaches my third ventricle.  Images of my brain are shown on a monitor to help guide the neurosurgeon in making a small hole using a small knife or laser at the bottom of the third ventricle to allow the CSF to drain into a natural re-absorption pathway.

The benefits of having ETV surgery are no tubing and shunt in my body decreasing the chance of infection. There is less incision.  Less incisions = less pain.  There is also a lower complication rate than a shunt.  Shunts often have to be adjusted.  The surgery can be anywhere from 30 minutes to one hour.  It is estimated that 50% of the shunts fail within the first two years.  The success rate of an ETV surgery is 80%

The risk of anything going wrong is approximately 1%.  The most common is bleeding and fever. Where they are making is hole is near the hypothalamus so it is possible for short-term endocrine, memory, and diabetes issues.   The risk of a sudden ETV closure is 20-50% within five years of surgery.  It is not guaranteed that the ventricle size will decrease after intracranial pressure decreases after surgery. Positive outcomes may not be immediately noticeable because the CSF has to naturally drain unlike a shunt placement where success is noticed right away.

I have been told that my physical symptoms will go away and take up to two months to disappear.  The mental & cognitive functioning may take a bit longer.

A successful outcome means a shunt-free life, and the only downside is to monitor symptoms in case of a sudden closure.  I am confident that the ETV surgery will be problem free and I look forward to being back to my old self and if not my old self; discovering who the new me may be.