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Michelle's Ongoing CM1 Journey...

Apr 23, 2014 - 0 comments
Tags:

ACM1

,

hydrocephalus

,

Chiari decompression surgery

,

duraplasty

,

VP shunt

,

intracranial hypotension

,

Sagging Brain Syndrome

,

syringomyelia

,

Syrinx

,

syringo-peritoneal shunt

,

Pseudotumor cerebri

,

iih

,

PTC

,

idiopathic intracranial hypert

,

sleep ap

,

complex sl

,

CPAP



Oct. 2010 - Diagnosed with CM1 (after 10 years of symptoms) and had Decompression Surgery (they removed part of my skull, my top vertebrae (C-1), trimmed my cerebellum (so it was no longer herniated into my spinal canal), and they pulled back my dura and put a synthetic patch over it (a process called duraplasty). After my surgery, my headaches weren't as bad, but I started having problems with the amount of spinal fluid building up in my head. Every time I pushed, pulled, or lifted just about anything, I could feel csf (spinal fluid) squeeze through my dura patch. The pressure was painful in itself and left me unable to do much.

Dec. 2012 - Shunt Insertion Surgery
The amount of csf became so extreme, that my cerebellum started absorbing it; a condition called hydrocephalus (fluid in the brain). I immediately lost my ability to walk or balance (even my eyes) and the spontaneous vertigo that I initially had became acute. They put a shunt with two catheter's in, draining the fluid from my head to a spot in my abdominal wall, called my peritoneum. The shunt was called a VP Shunt (Ventriculoperitoneal... where it runs from and to), although my ventricles were too small, so it really wasn't in my ventricles. It was placed in my head at the incision site (right by the hole they found in my dura patch).

Apr. 2013 - Shunt Repair Surgery
My shunt came out and the csf started spilling out. This time they brought in a surgeon who specialized in abdominal surgeries and he "tied it into my peritoneal cavity." While all they did was reopen my abdomen, I had to get used to the pressure in my head all over again and low pressure headaches are extremely painful whenever you lift your head. (I explained it to my kids like that of a vacuum, you may just be plugging in one end of the cord, but it's effects are there at the vacuum itself.

Aug. 2013 - Diagnosed with Sleep Apnea (most likely complex)
Had a sleep study (to test for sleep apnea) and failed miserably. Turns out, I stop breathing 71.8 times per hour and my oxygen saturation fell to 65% (which doesn't seem that low until you consider that 50% is the saturation level of a recently deceased person). Given a CPAP machine.

Nov. 2013 - Shunt Repair Surgery
My shunt came out again while I was sleeping. Because it was tied in, it was excruciating. They theorized that my lower abdominal muscles may have been pulling it out, so this time they opened me up right under my right rib cage and cutting out muscles (really, they called it a muscular dissection) they dropped the shunt from my ribs down to my peritoneum.

January 2014 - Problems... MRI revealed... Surgery
While waiting for my 6 week post op appointment, all my initial Chiari symptoms started coming back (the paralysis and everything). They did another MRI and found a few problems (some of which haven't been addressed yet).

    1. My entire brain was sagging because there wasn't enough spinal fluid to keep it buoyant/floating (a condition called intracranial hypotension). The weight of my brain was pushing on my brain stem and spine.

    2. Because of the weight (or so they theorized), I'd developed a condition called syringomyelia (syrinx; basically, it's cysts filled with csf in my spine). This is exactly what causes the paralysis they were hoping to avoid with my first surgery. The usual fix for a syrinx is another shunt called a syringo-peritoneal shunt that would be placed inside my spine where the syrinx is and drains to my peritoneum.

My NS wasn't sure what he wanted to do, since both are so urgent. Would a valve do the trick? Was I going to need another decompression? Would either of those things take enough of the weight off my syrinx to stop or reverse the effects? I didn't like the idea of having a catheter put in my spine. Together, we decided on trying the valve first. My NS put a valve in my chest that slows down the amount of fluid being drained from my head. He basically spliced into my shunt to do it. When he spliced into the shunt, he said the fluid was just pouring out of the shunt, which led him to suspect that I may have another condition called pseudo-tumor cerebri. Basically it's that my brain is creating too much fluid because it thinks there's a tumor there (which there isn't). You can develop it for a number of reasons and is somewhat common for people with Chiari.

Where we're at now...

The fluid pressure is much better with the valve.
I'm still going numb in my hands, legs, and face, multiple times a day.
Over the last month, the pain in my back has become excruciating, especially in the middle section of my back
MRI scheduled for 4/28/14 to see if my brain has raised and we'll go from there to work on the Syrinx.

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