Neuro-health Lifestyle Changes

So over the years a lot of doctors have given me a lot of suggestions for 'lifestyle changes' that would help my headaches, and give me more energy. Such suggestions have included:

Put on weight
Lose weight
Eat more veggies
Take vitamin D
Don't drink caffeine after noon
Don't drink caffeine at all
Get more sleep
No artificial sweeteners
Exercise more
Get massages
Take vitamins
Don't take vitamins
Drink caffeine

The list goes on... I've tried all these things, and nothing seems to ever help. This has left me very cynical about so called 'lifestyle changes'. But in a final shot while approaching surgery I'm trying one last bout of changes that my neurosurgeon recommends. I'm taking vitamins, sleeping as well as I can, dropping weight, trying to exercise through by debilitating fatigue, and worst of all - dieting.

This particular diet is unlike anything I've ever tried before in that it's ridiculously extreme and restrictive. It's called the paleolithic (meaning pre-agricultural), or 'caveman' diet. It's designed so that I can only eat foods my ancestors would have eaten. Things the human body is meant to eat. This means no dairy. No grains. No refined sugars. No artificial sweeteners. So what does that leave? Meat, eggs, nuts, fruit, and veggies. Oh but guess what? I don't eat meat, so just eggs, nuts, fruit, and veggies.

I've been doing it about a month now and have not seen any results, but keep being told "it takes time, it won't help over night". Let me tell you this though - my gastric tract HATES me. There's been days where I eat nothing but watermelon and peanuts. You can imagine the rest. I never realized how important grains were to me before doing this. I think 80% of my diet used to be grain-based, but since grains need to be sewn and aren't pre-agricultural. That's a no-no.

Doing some research I've found that people do this more strictly and trace it back to their actual ancestral roots to eat only natural foods of that region. Being of Scottish decent, if you exclude meat, what does this mean? Potatoes and turnips? Even worse, some people go so far as to not cook their food. So....raw potatoes and turnips. Yum.

I keep wondering after surgery if the doctor will request the hospital feed me paleolithic meals. That's going to be a lot of fruit salad. But hey - no need to worry about that pre-discharge B.M. they're requesting of me.

Diagnostic Images

Below are some of my own MRI's and Radiographs that I've edited slightly to distinguish what's what and illustrate my neurological afflictions:



This image shows my syringomyelia. The yellow is the spinal cord, the blue is the cerebro-spinal-fluid, and the pink is the syrinx (same stuff as the blue, but misplaced inside the cord).



The yellow is my spinal cord, the blue is cerebro-spinal-fluid, the pink is my brain, and the darker pink below the line I drew in is the Chiari malformation. No brain tissue should be below the line.



This radiograph simply shows my scoliosis. It was taken while I stood perfectly straight so this is how my spine is naturally curved. It's not usually noticeable except if I suck in my gut lowest right rib is significantly lower.

Just another scoliosis radiograph but higher up in the thoracic region showing that my spine is wacky all the way from top to bottom.

Random Worries

With a major surgery such as this I suspect it's normal to be worried about certain things. What are the risks, how long is the recovery, how will it affect my life.... But the thing is, I've known the answers to these sort of questions for a long time, so my mind's going a step further and racing and obsessing over the random stuff.

When can I dye my hair after surgery?
Will having a titanium plate in my head make me look suspect at airport body scanners?
How bored will I be in the hospital while I recover?
Will I set off metal detectors?
Do I have to avoid certain shampoos and crap?
Will I be able to stick a magnet to my head?
How bad will the scar be?
How do I feel about being called by the club-like-name 'zipperhead'?

The doctors medical assistant made a point of telling me that post-op before I'm allowed to leave the hospital I'll have had to make a bowel movement to make sure the drugs haven't caused constipation to the point of obstruction. This opens up even more questions.
What if I can't? And even more curiously...
How will they know?  Will I have to crap in a bio hazard bucket and show them or will they take my word for it?

Even though it's over a month till surgery, I'm prepping already by bothering people on forums with my retarded questions. As I type I'm downloading Bret Easton Ellis's 'Glamorama' from Audible.com (FYI - If you sign up you get any free audiobook and then can cancel and not be charged). I'd been told by someone that their ipod was a savior since reading was painful and difficult. I'm still going to go in with my netbook, some discover magazines, and some nat. geo's, but just in case I have the audio-book option.

We've also already got a trip all planned out to see some of Peter's family out east before this all happens because I probably won't be flying any time soon afterwards. I've got my calendar marked a week before surgery to re-dye my hair and prepare for some grey to start showing. There's another random worry - grey hair. People say the area that's been shaved often grows back grey, and at 23 I already have too much of that.

I'm actually worrying a lot about my hair as stupid and girly as that is. I've been growing it out on purpose and now to know I'll have a patch of it shaved off sucks. It should be done in such a way that I can hide it and the incision under the rest of my hair, but I just hope the Doctor has 'decent stylist' on his credentials also.

Meeting Dr. Oro

My first impression of Dr. Oro was a man who talks too much and sees patients as numbers to add to his surgery tally, but as appointments went on, I found him to be a kind man who does in fact see patients as people, and will answer any and all questions if you can slip them in between his exuberant breaths of speech. I was at first convinced he would want to do surgery right away and have that be that, but both to my delight in feeling confident in him and in my frustration at the process being slowed, he ran about a million tests to rule out other possible factors.

Okay, so a million is exaggerating. He did an MRI of my head, a MRI of my cervical spine, a cine-flow (seeing how the fluid moves through my spine/head), and an x-ray to see the extent of my scoliosis. Oh yeah, I also have scoliosis, or in layman's terms, a very crooked spine. When these came back with my 'insignificant' Chiari malformation, and no evidence of this syringomyelia I told him I had, he ran more tests. An MRI of the rest of my spine (revealing my uncommon thoracic syrinx), to make sure I didn't have 'tethered cord'. This would have been if the bottom of my spinal cord had fused to my spine and instead of having a true Chiari malformation, my brain was simply getting tugged down into my spinal canal over time by the brain stem. Luckily, I don't have this.

The last thing he wanted was a repeat spinal tap. If my CSF pressure was still 30+, the surgery options would be different. Luckily my opening pressure was only 16 (only slightly above normal), and they drained a bit so it's down to 11 as of most recently (normal). This spinal tap kind of sucked because I had to lay flat on my stomach while the technician attempted twice before being successful on the third time, to get the needle through my vertebrae. I had been prescribed Valium to take before the procedure this time, but unfortunately I didn't feel the effects till about 4 hours later when I was home.

So since my spinal cord's not tethered, I don't have excessive fluid pressure in my head, and nothing else seems terribly out of the ordinary, I'm officially a candidate for 'Posterior Fossa Decompression' surgery. This is where the doctor is going to shave a strip of my hair on the back of my head, cut, take out a small piece of my skull, open the sac that my brain is in, pull down some tissue from higher up that lines my skull, stitch that over the brain, and then (hopefully assuming my skull is thick enough, screw a titanium plate over the missing skull), staple me up, and voila, done. The surgery takes about 3.5 hours, requires 1 day in the ICU, and a 2-4 day hospital stay. If you youtube it, you can find all sorts of gory videos.

As terrifying as it is, the risks are really minimal and the same as with any surgery, and I'm also somewhat excited at the prospect of not having headaches and not living off narcotics anymore. It only works for 80% of people, but for the agony that I'm in on a daily basis, 80% is a damn good odd. I worked towards getting it scheduled the same day as I last saw the doctor, and will anxiously be thinking about nothing but this for the next month while I await my hopeful salvation.

The Road To Here...

Brain Surgery! Wow. Even saying the words take my breath away a little. Before we get to that, allow me to back up a little...

Since the age of 15 I've found myself suffering from terrible incapacitating headaches. Luckily enough by age 16 they'd found the answer(s) to why:

The first being a 'Chiari malformation' [key-R-E]. This is basically where part of the cerebellum (the lower back part of your brain that mostly controls balance and motor skills), doesn't have enough room and is squashed downward into the spinal canal (where your brain stem and spinal cord meet). It's also sometimes referred to as 'cerebral herniation' (like a tummy hernia...but with the brain). My cerebral herniation measures 8mm. This sounds insignificant, especially to anyone who uses the imperial system and can't mentally gauge a millimeter, but it's enough that I've spent a good portion of my life heavily medicated from headaches.



from conquerchiari.org

The second puzzle piece is 'Syringomyelia' [psy-ringo-my-L-ia]. This is where cerebro-spinal fluid (of CSF) that surrounds and cushions your spinal cord from your vertebrae is actually forced inside the spinal cord causing a cyst-like little worm of fluid (or syrinx). Syringomyelia often accompanies Chiari malformations and is located in the cervical portion of the spine (the uppermost section), but in my case my syrinx is in my thoracic region (the next section down from cervical and above lumbar (lower back) ). Now - I don't know the significance of that exactly, just that it's uncommon. What does syringomyelia do? I'm not really sure. All I know is it eats away at nerves - particularly in peoples hands, feet, and face - and now I can stab myself in the hand and not feel it. *Funny side story - May 2010 I was attacked by a dog with about a zillion puncture wounds in my hands, flesh literally hanging off, and didn't feel them at all. Two inches up my arm where she bit and broke my radius...that I felt all too well*

from websters-online-dictionary.org, edited by me

When I was 16 a neurosurgeon suggested a surgery that could potentially make me pain-free and happy, but my mom didn't go for it - we won't go into that though. So I had a lumbar puncture to drain some of the excess fluid pressure that was making the syrinx worse. A lumbar puncture is where a doctor numbs your lower back slightly, then jabs a really big needle in between your vertebrae to suck out fluid. I've had a few at this point, and sometimes it doesn't even hurt, but sometimes like drawing blood, they miss and need to re-try and fish around in there. All I know is my age 16 lumbar puncture was one of the most traumatizing medical procedures of my life thus far....and I've had a LOT of medical procedures.

7 years later and I still have these headaches. Cue March 2011. On a trip to visit family in Boston I wake up violently ill with the worst headache I've ever had in my life! I go to an urgent care clinic, who rush me to the ER where I wait for 6 hours before they can get an IV started because I'm so dehydrated from puking up my guts. They get the IV in and then ...oops... our medicine dispensary computer broke and we're too stupid to get you anything manually. 8 hours in the ER and I finally get on dilaudid, a drug 8 times stronger than morphine. It hardly helps but just makes me feel more queasy and restless and uncomfortable. They do a lumbar puncture and find that the pressure in my spinal cavity is 30 (over twice what it should be). They diagnose me with 'pseudotumor cerebri' which as scary as it sounds because of the tumor part, has nothing to do with a tumor and just means excessive fluid around the brain.

From this point on I'm miserable all the time. Never a moment of relief. I'm taking diladid orally every day just to survive the pain. I go to my neurologist who puts me on medicine to stop CSF production but that's all he can do aside from prescribe more dilaudid. Desperate I stumble upon ASAP.org, an association for people just like me! All this time I thought I was so uncommon and rare, but actually, tons of people suffer from this kind of crap. I hear the name Dr. John Oro and to my surprise he practices right in my own city! A world-renown Chiari malformation neurosurgeon specialist is 30 minutes from me. I make an appointment right away.

Stay tuned to find out what happens next.