Feeling Under the Weather for Three Months

After being and cleared for exercise class (and everything else) I proceeded with my life as though I hadn't just had brain surgery.


I returned to exercise class, Writers Group etc.


My "reward" for this? I came down with the worst cold I've had in five years. I've been so sick I've been forced into doing nothing. I find myself sleeping ten+ hours a night, no appetite (again) drinking lots of tea, and too exhausted to even watch tv. I've lost two pounds in two weeks. That's what happens when nausea is bad before you eat, and worse after you've eaten. However, I believe this is just a cold, not another shunt malfuntion. I don't have any of the funky symptoms I had back then.


Probably, this cold is telling me I'm doing too much too soon, and my immune system is still strengthening from surgery. It's forced me to slow down to doing almost nothing.


For one reason or another, I haven't been feeling well, like myself, since the middle of September. I've either had symptoms of a shunt malfunction, feeling awful from surgery recovery, or now a bad cold. Three months is a long time to be feeling "sick," a long time to not be feeling like yourself.


Maybe after this cold, and not returning to exercise class, or any of my other regular activities until about the middle of January will help me to recover from everything. Without activities, it will be another forced slow-down.

Research Money Needed for Hydrocephalus

Hydrocephalus needs more research. For there to be more research, researchers need grants. Generally, grant money comes from public funding. Currently, there's so little awareness of this condition; today only one in every fifty Americans has ever heard of hydrocephalus. How is that so, when this condition affects more than one million Americans? Without increasing public awareness, the current lack research funds designated towards finding a cure will perpetuate.


For those of us from the First Generation of shunts, we're the first people to born with, or acquire hydrocephalus as children, and survive to reach adult-hood. For forty, fifty, or more years we've lived with shunt blockages, failures and multiple surgeries. We've also suffered many differing types of both visible and invisible mental and physical disabilities. The American Taxpayers collectively pay billions a year in healthcare costs related to hydrocephalus. Today, a shunt placement is THE MOST COMMON pediatric neurological surgery.


In the past fifty-or-so years since shunts were invented, the only other surgical advance in the treatment of hydrocephalus is a surgical procedure called an endoscopic third ventriculostomy (ETV) Instead of a mechanical one-way valve, which leads to a drainage tube; an opening is created in the floor of the third ventricle using an endoscope placed within the ventricular system through a hole drilled in the skull.


I'm just now recovering from my most-recent shunt failure, I'm three weeks post-op. I've only ever had nine brain surgeries, and for that I'm very fortunate. Many patients (younger than I) have endured one hundred or more shunt failures which has led each time to a brain surgery.


At my surgical follow-up I asked if I might be a candidate for an EVT. I was alarmed at the increase in brain surgeries I'd experienced recently. I've had three shunt failures in the past three years, including two failures in 2016. My neurosurgeon explained I'm not a medical candidate for an EVT. The meningitis I was born with, damaged membranes responsible for collection, distribution, and absorption of one pint of cerebral spinal fluid produced each day. That process for me is defunct. To be a candidate for an EVT, a patient must have a naturally working CSF distribution mechanism.


As things stand now, I face another forty or fifty-ish years wondering when my next brain surgery will be. Others who also aren't candidates for an EVT (for whatever reason) will bare that crutch with me.


Can you imagine yourself or your child spending every day of your/their lives waiting, and wondering when your next brain surgery will be? No matter how long since your last one; there will always be another.

Another Brain Surgery

A short six months after I had my last shunt revision in April of this year, it's failed. There's nothing like having two brain surgeries in the same calendar year. Next surgery scheduled November 22, 2016. I'm spending Thanksgiving in ICU. Thank God it's not Christmas, that would be really depressing.

What a compliment

I met an indie author at the Schaumburg (IL) Library last Saturday. After the meeting she sent me this note: "It was a pleasure meeting you and I want to say that I think you are inspirational!"

A Scary Situation

Last night, after going to bed, I had to get up. Of course the light was off, and although I've slept in that bedroom for over eleven years, I managed to trip over something. The effect was (as it always is) I fell before you can say a one-syllable word. The one syllable word that did come out of my mouth was "FUCK!"


In one fall I had somehow managed to hurt my shins and calves, I'll have bruises in a few days, and hit the back of my head on the hardwood floor.


My falls always happen so quickly, and I've no idea how this one happened or what I tripped over. That's what makes this fall scarier than others. Scary because not only did I hurt myself more than I usually do, but I also hit my head on a hard surface in the process. The idea occurred to me "It may not be a good idea to go to bed immediately after hitting one's head I may not wake up" but then remembered I'd hit my head harder when I fell backwards off a bar stool in the kitchen a few years back. I was fine then I reasoned, I'm fine now. Today, not unexpectedly, I have a headache.


I've always had bad balance. It had been getting better, but since the beginning of September it's gotten worse. Also, I don't usually hurt myself when I fall (about once a week); the most I get is road rash. This fall feels little more significant. That in itself is scary too.

This Year's Hydrocephalus Fundraiser

Tomorrow is the 2016 Hydrocephalus Walk to raise money to ultimately find a cure for hydrocephalus. Between the two of us, Ken and I will raise one thousand dollars. I want to thank all those who gave money for this event.


I had shunt revision surgery in April, and may be looking at another surgery sometime later this year. Shunts are not a cure, they're only a management tool.


Shunts are supposed to last an average of ten years for adults. Unfortunately with me lately they've lasted less time than that. As I was reminded by my neurosurgeon that's why it's an average; some last more, some less. With shunt replacement surgery in 2013 and possibly two in 2016, I still have to remind myself, overall I've been 'One of the Lucky Ones'.

Hydrocephalus in the United States

There are as many people living in the United States with hydrocephalus as there is with Down's Syndrome or type 1 diabetes. Although there's no cure for any of these conditions, hydrocephalus only receives ten percent of the funding for research than that of compared to the other two conditions. This statistic needs to change, that's one of the reasons I'm writing a book on my experiences with hydrocephalus. Without public awareness, there's no funding for research. Without funding, no researcher will work on looking for a cure. Please help me raise public awareness by buying my book whenever it gets published. The name of the book is "I'm Having Brain Surgery on Tuesday".

Today Wasn't a Good Day

I had a terrible headache. I woke up with it, and thought "I learned at the conference brain fluid collects while you're lying down. as you get up, the fluid begins to drain and the headache goes away."


However, this wasn't to be the case. I tried, 10 milligrams of Marinol. When the headache didn't go away, I tried a migraine pill. When that didn't f the headache, I tried Advil cold and sinus which helps with my recent wheat sensitivity. The headache's intensity diminished by half.






Seeing that the Advil concoction was working, I took another one, and the headache went Away completely. However the price I paid was a day of enormous fatigue and a bad temper.




I took two, one-hour naps, and I'm not sure how many people I impatiently snapped at today. Oops




Luckily, Ken wasn't the target of any of my angry snaps.

There but for the Grace of God....

There is no cure for hydrocephalus and very little research.  The treatment/management tool is a shunt.  It's basic design was developed in the 1950s, and has an average 50% failure rate after two years.  The NIH spend sixty cents per person per year with hydrocephalus, compared with $300 per person per year with diabetes, yet there are the same number of people in the USA living with hydrocephalus as there are with diabetes.

It costs the USA one Billion dollars each year in health care costs to treat hydrocephalus.

But this is where I'm 'One of the Lucky Ones'.  Sixty percent of children with hydrocephalus are not independent as adults. Fifty percent of children with hydrocephalus score 80 or below on standardized intelligence tests.  Even fewer I'm guessing go on to go to college and get a degree.

Support Group?

It seems unbelievable.  After a couple of weeks of "growing pains" with this new shunt, I realized a few days ago, I'm now headache free.  Of course I'm still on my regimen of about eight prescription drugs to keep headaches and other maladies at bay (with two others on stand-by if needed).  However, I feel like I officially can't look for a support group for those in chronic pain any longer :-)

I'm still on the hunt for a support group for "Chronic Illness" or "Adults Who Grew Up With Hydrocephalus."  The second might be a little tougher, as I'm at the end of the first generation of hydro kids to make it to adulthood.  On the other hand, I don't want to be stuck in a support group with a bunch of women complaining about their experience with a "made up" condition like fibromyalgia.  I need to find a group where the adults have had (whatever they have) since childhood, and it needs to be potentially, conditionally, life threatening like meningitis and hydrocephalus.
Maybe a support group for Spina Bifida would work.  Like I said, I'm still on the hunt.

An enormous bald spot

During this year's surgery they shaved off even more hair than they did in 2013.  I know it sounds like a trivial thing to be concerned about.  If  I were a guy, I could shave my whole head and show off my nifty head scar.  If I were a Goth I could shave an equal and opposite amount on the other side, and die my hair black.  However, I am neither of these things.

Thank God for thick hair, when I have my hair down, you can't see the enormous patch of missing hair.  So, unless I have my hair in a ponytail, the bald/growing out hair doesn't show.  My hair near the growing out sight is seventeen inches long.  It will take thirty four months for the shaved area to reach the length of the rest of my hair, so basically three years.  Based on how long the last shunt was in,  I may be due for another shunt revision by then.  Then the process will start all over again.  How depressing.  I guess though if my hair is the least of my worries, and I still don't suffer from any physical or mental handicaps, I am one of the lucky ones.

Also, thank goodness for hair extensions.  I can go back to exercise class (when authorized to do so, the middle of June) with the hair extensions in, and won't have to explain my bald/growing out spot to the rest of the class.  No one will notice, it'll be covered by the hair extensions, which will be secured with barrettes.  Much better than last time. 

So That's the Reason for This Terrible Fatigue

For about two years I've been not just tired, but my whole body has felt like it's moving in quicksand. I'd wake from seven or even ten hours of sleep and still feel like I needed a long winter's nap.  I was given an "upper" by one of my physicians, but honestly, it only helped to take the edge off.  I found myself taking longer and longer afternoon naps, regardless of how long I'd slept the night before.

The physician that gave me the "uppers" when they didn't work, suspected I had a sleep disorder (probably sleep apnea), so sent me for a sleep test.  This involved an EEG while I slept.  Upon getting the results, there was no episodes of obstructive sleep apnea nor central sleep apnea (where your brain"forgets" to send the signal to you lungs to breathe.)

Meanwhile, I had developed a strange, dibilitating headache at the back of my head.  I mentioned it to my neurosurgeon at my yearly visit.  I didn't expect much, since he's not a headache guy, but to my surprise, he took it seriously enough to to order an MRI.  Two weeks later when I saw him for test follow-up he was befuddled.  There was a build-up of cerebral spinal fluid within my brain, but he was unsure of the cause.  Was it the shunt that was only put in three years ago now malfunctioning in some way, or was the build up due to a cerebral cyst I had developed after a car accident in 2003? He decided to consult with his fellow neurosurgeons and get back to me by the end of the week.

As the end of the week drew nigh and I had heard nothing, I e-mailed his office telling them the headache had now moved to the top of my head reminded (by it's nature) of the worst headache of my life.  That headache was due to shunt failure.  I was immediately contacted by his nurse and asked if I  thought it was an emergency-no-thus I was scheduled for shunt replacement brain surgery the following Friday.

I was admitted to the hospital in the ICU unit.  I had surgery Friday morning and spent until Saturday afternoon in ICU.  I thought that strange, the last time, three years ago, when my shunt catheter broke, and it was more of an "emergency" I wasn't in ICU. I was more upset though that they shaved off even more of my hair than they had three years ago, and it took me two years to grow it back.

Two weeks later, at my follow-up appointment from the surgery I asked why did my surgeon think this shunt failed so soon? Was it damaged from my car accident?  No he thought my abdominal cavity was having difficulty absorbing the daily pint of CSF my body makes.  Of course that got me thinking, did that mean I was going to have to wear a little bag like a colostomy bag around with me for the rest of my life?  Or is that me and my over-anxious mind?  The thought of some little bag outside my body to collect brain fluid is more than I can handle.