As those of you who have personally met me or read the article I wrote that was published in the July 2015 Ensign know, one of my many health conditions is hydrocephalus. For those of you not familiar with that term, it refers to an irregularity in the proper flow level of cerebrospinal fluid (CSF). Those with hydrocephalus either have too much or too little CSF in their brains. Throughout my life, I have been on both ends of that spectrum. When I was born, a CAT scan showed that all you could see was fluid and just a tiny speck that was my brain. But as I grew, the CSF level changed, and now, looking at a CAT scan, all you can see is brain, with only a little fluid. (My tongue-in-cheek joke is that this accounts for my superior intelligence).
Most people who have hydrocephalus have a mechanical device called a shunt to regulate the flow of the fluid. In its earliest and most primitive days, if anything went wrong with the shunt, whether it stopped working or was the incorrect setting, it had to be replaced. But as shunt technology evolved, the setting of the amount of pressure regulating the flow has been able to be magnetically adjusted. Because a magnet can alter the setting so easily, I have always had to have my shunt setting checked when my head came within any contact of a magnet.
The trouble with shunts is, they sometimes fail, malfunction, or stop working. Many of the signs that something is amiss with the shunt are neurological symptoms that hydrocephallics exhibit. They include but are not limited to increased headaches, nausea, dizziness, vomiting (TMI, anyone?) disorientation, trouble sleeping, trouble waking or staying awake, irregularity in normal bodily functions, confusion, difficulty concentrating or thinking clearly, forgetting how to do things that ordinarily come naturally, numbness of bodily extremities, and, in severe cases, blacking out or becoming comatose.
The long and the short of my telling you all this is to let you know that I have been experiencing many of these same symptoms, which has led me to conclude that there may be a problem with my shunt. I know that declaration may scare many of you, but rest assured, unless something drastic happens, I'm not going anywhere. Fortunately, I caught these symptoms early enough that it shouldn't create any problems or emergency situations. My one problem, which my parents have before struggled with on my behalf in the past, was getting my neurosurgeon to take these symptoms seriously. Oftentimes, when a problem is suspected, heaven and earth had to be moved in my behalf before my neurosurgeon would even take a look at me. This time has been no different. At first, my neurosurgeon's nurse tried to attribute my symptoms to a medication issue. But I have closely monitored and have been regulating the taking of my medication, and, since I remember all too well what others observed about me the last time I had such a problem (which was in 2004 when I was a teenager) and had noticed the same things about myself now.
As I noted above, for me, the main way problems or irregularities with the shunt have been determined in the past was with a CAT scan, a series of x-rays of my shunt line, and, in recent years, a heart ultrasound. (A shunt drains from the ventricles in the head either in to the stomach (peritoneum) or to the heart (atrium). My shunt used to drain into my stomach, but then my stomach began building cysts around the shunt line, irreparably clogging my stomach and ruling it out as a drainage site. So they put it into the third ventricle in my heart.) I had never heard of any other option to determine problems.
So I was very much surprised, and understandably more than a little unsettled when I learned that a long-standing procedure for detecting shunt problems was a procedure called a lumbar puncture (which some term a spinal tap). While some incorrectly believe and assert that this procedure involves the opening up of the spine, what is actually done is that a small needle is inserted into the spine, and for half an hour, samples of CSF are taken. When they are analyzed in this way, the effectiveness and even the setting of the shunt can be easily determined and confirmed beyond reasonable doubt. While This has been done for years, but I have never had it done before.
The procedure is not in any way, shape or form risky. I was informed, however, that a slight increase or worsening of my neurological symptoms may happen. I was beyond relieved to discuss my upcoming procedure with my neurologist during our visit yesterday. Back in the early days of her medical practice, she performed lumbar punctures all the time. What relieved my mind the most is that she said while the potential side effects are possible, and while it is wise to schedule the exam for a week when not a lot else is needing to be done, in general, side effects do not present themselves in a good majority of those who have the procedure done. In fact, she went on to say that if there is a problem, the procedure might even relieve or resolve certain neurological symptoms instead of causing them.
Within the space of yesterday, I scheduled the lumbar puncture for December 1, scheduled a follow-up visit in the same city several hours later with my neurosurgeon's nurse to go over the results, and saw my neurologist. One of my main concerns during our visit was to ask for reassurance about the effectiveness of the lumbar puncture. As she always does, she did resolve my concerns about all of this and said she was glad to hear of my persistence in attempting to get my shunt checked out.
So now the waiting game begins. Depending on what happens on December 1, I may be having surgery to fix and replace my shunt. My wife says she is relieved that we are heading towards a resolution to any problems I might be having, and I couldn't agree more. I am also beyond relieved that I will be able to now let go of the worry about whether or not there is a problem and instead focus on being with family this Thanksgiving. I have spent far too many holidays in the hospital. In fact, I think it's fair to say that I have spent far too many days in general there.
My family has often joked that with my hospital stays alone, we have likely added a wing or two to the hospital that was like a second home to me during the major growing-up half of my life. I had those experiences in mind when I put together a personal tapestry project for a 10th Grade Honors English class. Part of my "tapestry" was a collection of poems for which I had either penned the words or to which I felt I personally connected. One of the poems I wrote about my lifetime's worth of hospitalizations was about my hospital stay. It was aptly and appropriately titled "Home Away from Home" because that's how I came to view the hospital.
As part of my explanation of what's going on with me, I wanted to share that poem today so you will understand just how connected I felt to my second home. Before I do so, I just wanted to offer a disclaimer. I don't believe I was even sixteen at the time I wrote this. Being somewhat of a poetry novice, I didn't have the sense of rhythm and rhyme and all the nuances of poetry that I have come to develop since that time. Some of you may find it therefore disappointing. Disclaimer over: you've been adequately forewarned. Here's the poem:
Home away from Home
A hospital bed, a
window,
A TV, a chair,
A very small bathroom
is what you’ll find there,
In my home away from
home.
Doctors and Nurses
are always there,
You know they’re here
to help you,
But you’re too
miserable to care,
In that home away
from home.
It’s a place of
healing and with fairly good food,
There, unlike school,
The people are seldom
rude,
In that home away
from home.
I go there too much,
For surgeries and such,
Alone, feeling a
void, Sometimes getting annoyed,
Sometimes for a long
stay, Always willing to go away,
From my home away
from home.
James Gordon Stokes
When it seemed like my main hobby was just sitting around waiting for the next time I needed to visit that second home, I began to keep track of the number of surgeries I had, most of which have been shunt related. I lost track at 50 when I was in the second grade. I am now approaching my 30th birthday. I wouldn't be surprised if by now that number has doubled or even tripled. I went through several periods of time in my life (particularly 2nd, 5th, 8th, and 11th Grades) when I had multiple surgeries within the same year.
Perhaps my worst year for surgeries was when I was in 11th Grade and had four such procedures in the short period of merely 3 weeks. It was in recovering from the fourth and final such surgery that I had the experience about which I wrote the article that appeared in the aforementioned edition of the Enisign. I have had experiences I would much prefer to forget.
I have even had one near-death experience of which the details escaped me until just recently this year. As with some near-death experiences, while I initially realized and acknowledged that I had had one, the resulting complications in my health made me forget the details thereof until earlier this year when my memories of it started coming back. Under ordinary circumstances, I would happily discuss the details of that experience, but, as with a couple of other events that have happened in my life, the details thereof in my case are too sacred to relate. I have shared them with my wife, as I have other similar experiences I have had, but until Heavenly Father sees fit to authorize me to make any of these experiences public, I hold it as a sacred obligation to not share those details.
Suffice it to say that, because of those experiences, I have a firm, unshakable knowledge that the work of The Church of Jesus Christ of Latter-day Saints is truly the work of the Lord. Primarily borne of these experiences I have had, I feel I can testify without equivocation that I have the sure and certain witness of the validity of the life, mission, and purpose of Jesus Christ as our Savior. I have been told in my patriarchal blessing that we are in the Saturday evening of time, and it is my hope and prayer that Sunday will come soon. It is my fervent witness that the Savior will come again. I know and comprehend that as surely as a man knows and comprehends he has breath. I have also been instructed that my life's mission is to bring people unto the Savior and to help prepare the Saints belonging to the Lord's Church for the day when He will return. This blog, and how devoted it is to all Church-related news and developments, is one way in which I hope I am fulfilling that sacred responsibility.
I also know that one day I will stand accountable before God for how well I have met and fulfilled this purpose. I join with ancient and modern prophets in hoping that, at that day, I can stand before him with a clear conscience, knowing I have met his expectations for me. It is a goal which I work towards daily. Though along the way I have occasionally stumbled, I have always had the finest people to help me pick myself up, dust myself off, and keep trying. Many of those people now faithfully follow this blog. That each of us may strive with all our heart, might, mind and strength to fulfill our divinely directed, eternally orchestrated, and sublimely sacred purposes for which we have been sent to this wonderful albeit imperfect world in which we live and that we may all be ready for that great (for the righteous) and terrible (for the wicked) day is my humble prayer in the sacred name of Jesus Christ, Amen.
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