Paychecks VS Patients

There is blatant disregard for patients with rare or unknown and invisible illnesses. Many of us are turned away being told we're crazy and to schedule a psych eval. Most are given several different medications that never seem to help and only cause horrible side effects. It's almost like they are throwing anything at you (which they will inevitably get a kickback from) in hopes it will do something so they won't have to deal with you. But they'll gladly take your co-pay and send you on your way..
So my question is:
When did the medical profession become more about the paycheck, and less about the patient?
I could have sworn that patient care was supposed to be number one. Correct me if I'm wrong, but telling a patient they aren't feeling what they're feeling isn't patient care. Referring them for unnecessary psych eval's under the assumption they are making up what they're experiencing, instead of actually looking into what is causing their problems is not only unprofessional, but inconsiderate.
And how is any of this supposed to help the patient? It leaves them confused, angry, depressed, frustrated, and otherwise defeated with no hope they'll ever feel better again... but Dr's feel great with the money they claim from insurance companies for your visits (and not doing anything for you besides telling you that you're crazy) and pharmaceutical companies (with all the bogus medications they want you to take) that fund their golfing trips around the world, fancy cars, and extravagant living. What did they do to actually EARN all that though? I mean, I could sit there in a white coat and pretend I know what I'm doing (and probably do it better than they do) and prescribe various medicines, too...
So again, when did it become more about the padding in their pockets instead of concern for the patient's well being?

I Miss The ME I Used To Be..

What I wouldn't give to be the old me..
The one who danced- either with a company, or in productions...or down the grocery store aisles.
The one who played- thrill seeker and adrenaline junkie at heart. Roller coasters, roller skates...bigger better faster was my rule.
Go big, or go home.
Just not anymore...
No more movies, birthday parties, outings, adventures, or dancing.
I get to be a bump on a log, sitting on my couch, going to arrogant and ignorant Dr's offices, twiddling my thumbs waiting....And waiting some more.
For what?
To be told there's no hope, nothing's wrong with me, I'm crazy...
What I wouldn't give to be the old me, the vibrant me, the fun me once again!

Inconceivable!

Apparently, even when I DON'T list my symptoms, I'm being told they aren't related to the only growing abnormality arising in diagnostics.
Seriously?!
I didn't give you one symptom and you're going to tell me that my symptoms sound like something else all together?
Wow. Now Dr's are telepathic AND psychic?
I'm more convinced than ever that it's a conspiracy type cover up with all these Dr's. It's either that or pride covering their ignorance, because it's absolutely ludicrous to tell me my (unlisted) symptoms are something else completely!
Epic FAIL!

My Bucket List

When you hear the phrase "Bucket List", you automatically think of all the things you'd like to do before you die. Crazy, fun, spectacular, life changing events you'd like to say you did, at least once!
I've got many things on my Bucket List...things that include learning piano, sky diving, traveling to a few different countries...things like that. Never once would I say that brain surgery was on my Bucket List. I don't remember ever waking up and thinking, "Man, I hope someone cuts my head open and pokes around in my brain before I die!" That's ridiculous. No sane person would elect to have brain surgery, unless it was going to help them. No sane person would stand in line or sign up for brain surgery as something they want to accomplish before they die. Let's be serious, no one WANTS brain surgery. If I never had my body sliced open and something foreign shoved in it, I'd be ecstatic! Unfortunately, something foreign decided to grow in the most delicate place in my entire body, and it happens to affect nearly every aspect of my life...
So what would surgery entail..?
There are a few different approaches, but only one happens to be the most successful. It is less invasive and the healing time is that of a broken bone.
They shave a section about 6 inches long by about 1 inch wide on the back of your head, make an incision and proceed to remove a dime size portion of the back of your skull. They then insert an endoscope inbetween the cerebrum and cerebellum until they reach the center of the brain where the cyst is located. Through the endoscope, they insert a tool used to cut away the walls of the cyst, clean things up and then remove the endoscope, replace the portion of the skull removed and place a piece of dissolvable mesh over top to hold it in place until it heals. They then seal up the incision and you're done. Recovery time to when you're ready to return to work is about 6-8 weeks (give or take), and full recovery is about 6 months.
Again, not something I've had on my Bucket List, but much better than the alternatives. Other approaches involve slicing open half your head and moving the brain out of the way, causing much morbidity and way longer healing time (like 2+ years, if you're lucky).
So, given the alternative of living like this- with no quality of life, pain daily, and unable to work, etc... or having brain surgery, I'm going to choose surgery.
I guess you could say the newest addition to my list is revised to now include brain surgery.

Links & Facts

So, I've done much research, and basically every site says just about the same thing. Occasionally you'll find something different, but it's rare. Below, I've put the basics together to give a better understanding of things. I only pull information from medical publishings, journals, or sites. While it's reassuring to know that you're not alone, it's unreliable to gain accurate information from hear say and personal experience, especially if you are trying to prove a case to a Dr.
As I find more helpful sites, I will post them.

What are pineal cysts? 
Pineal cysts are cysts of the pineal gland, a small organ in the brain shaped like the seed of a pine cone that is responsible for making melatonin, a hormone that regulates sleep.  Pineal cysts may be found by chance in up to 10% of people undergoing CT or MRI brain imaging, and they occur in three times more women than men.  Most pineal cysts do not cause symptoms and stay the same size over time (remain stable).  In the rare circumstance where a pineal cyst does cause symptoms, it may cause headaches, hydrocephalus, eye movement abnormalities, and Parinaud syndrome.  Because most pineal cysts do not grow or cause symptoms, there are no established guidelines for routine follow-up for individuals with pineal cysts.  Treatment is usually only considered when a cyst is causing symptoms.  In the past, treatment for symptomatic pineal cysts included surgery to remove the cyst (craniotomy); more recently, less invasive procedures such as stereotactic aspiration or endoscopic treatmenthave been recommended.[*1, *2, *3]

What are the signs and symptoms of pineal cysts? 
Pineal cysts are usually asymptomatic. However, there are rare cases of symptomatic pineal cysts which cause headaches, hydrocephalus, gaze palsy, Parinaud syndrome, and vertigo. Less frequently, patients with symptomatic pineal cysts may present with ataxia, motor and sensory impairment, mental and emotional disturbances, seizures, circadian rhythm disturbances, hypothalamic dysfunction of precocious puberty, and secondary parkinsonism.[*1, *3, *4] Pineal cysts can be symptomatic, headache is the most common symptom. [*3, *5]

*1http://rarediseases.info.nih.gov/GARD/Condition/10723/QnA/26006/Pineal_cyst.aspx

*2http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1146/viewAbstract

*3http://www.surgicaltechhq.com/2012/11/30/understanding-pineal-cysts/

*4http://www.reference.com/motif/health/symptoms-of-pineal-gland-tumors

*5http://www.ncbi.nlm.nih.gov/m/pubmed/15447706/?i=2&from=/20799383/related

You've Got To Fight for Your Life!

I don't think I've ever had to fight for anything so hard in my entire life.
I thought memorizing anatomy going through massage school was hard, I thought learning all the zip-codes and their correct sorting destination at UPS was hard..... but holy freaking cow, trying to find a Dr who will listen to you, pull their head out of their asses for five minutes, and actually DO their job and TRY to help you..? I have a better chance of winning the lottery AND the Publisher's Clearing House 3 times in a row, than finding a Dr that will help!
Increasing the difficulty, not only do I have to fight for Dr's to listen to me, but I'm also having to simultaneously fight to keep my short term disability active. They want continuous proof that I'm not physically capable of performing my job duties, which isn't easy when Dr's notes say things like "unremarkable" or "normal" in regards to diagnostic testing, and my personal favorites "fixated" and "obsessed" (over the cyst) which make you sound both healthy and crazy at the same time.
Keep in mind, the money I'm fighting for on disability is less than $100/week. That's not even enough to cover my rent. While I'm exceedingly grateful to have it, they act like I'm asking for $100/day instead. I understand that they don't want to pay on any fraudulent cases,but having to prove that what I'm going through actually exists without support from Dr's, makes getting paid EXTREMELY difficult. Then, attempting to get food stamps to help compensate is just as frustrating. Being a single adult without children, you can't get approved for much assistance in the state of Arizona. While I don't need state insurance, I wouldn't qualify for it anyway. I can't get cash assistance because I don't have children. I can't get rent assistance because I don't have children. And making less than $400/month, I STILL don't qualify for the full amount of food stamps....
Nothing like having to fight for every single aspect of your life day in and day out... physical, mental, emotional, financial... without a break, for the last 10 months.

Where Everybody Knows Your Name..

While the majority of friends and family support me and understand to a degree where I'm at, there is much to be said to be surrounded by those who are struggling and suffering with the exact same thing you are. I'm lucky enough to have found a family of cyst-ers (and brothers, tho there aren't as many guys) on Facebook where I'm free to be me and not hold back when it comes to this infuriating intruder. Another place to call 'HOME'.
I absolutely love my family and friends outside of this group, and while their support is immeasurable and priceless, it's just not the same as someone who can justifiably understand exactly what's going on with you. I don't know what I'd do without either group of people in my life right now... They all mean so much to me, and while I forget to always express my gratitude, I sincerely hope they all know how grateful I am to have them in my life!

The ones I'm trying to avoid are the ones who tell me ...maybe you should listen to the Dr's, they can't ALL be wrong if they're ALL saying the same thing..... C'mon now. ANYONE who's known me for any duration before this started KNOWS this is not who I am. I don't have any quality of life. I don't get to go out with friends because of  balance issues (darkness, crowds, fast/unpredictable movements...all make it worse)... No movies, no bars, no long drives, nothing fun.
My body doesn't do "normal" or "average" (hell, neither do I, but that's another story for another day..). And, if you're not going through this yourself...SHUT UP! I just don't need to hear the same things from your mouths, as the Dr's! This is a rare condition, extremely uncommon, not as simple as a broken bone or scraped knee... it's in a part of the body that is vastly misunderstood and relatively unknown. So, while I appreciate the "support", unless YOU can tell me you know the ins and outs of the human brain and it's functioning capacity better than a neurologist, I really don't want to hear "maybe the Dr's are right"... Show me your degree and we'll talk..
Until then, I'm glad I've got my group of cyst-ers, my home away from home, the place where everyone knows my name.
But I digress...

Downright Debilitating Dr's Visits

Webster's Dictionary defines a Dr as:
a person skilled or specializing in healing arts; especially one (as a physician, dentist, or veterinarian) who holds an advanced degree and is licensed to practice, a medicine man.

Skilled... there's a good word. I had a client who was an anesthesiologist once tell me a disturbing joke. it went like this:

Q: What do you call a Dr who graduated at the bottom of his class?
A: Doctor.

So, while the term skilled could apply to passing medical school by the seat of your pants, or knowing how to be successful in business by talking out of your ass, I would rather it be applied to the proficient, able bodied, capable and intelligent person who cares more about the wellness of their patients than the amount of money in their pockets.
As for specializing in healing arts, if they can't throw a medical band-aid of prescription medication at what ever is going on with you, they toss you to the side and tell you you're crazy, that there's nothing they can do for you and that you need to go for a psych eval because you're obviously creating your symptoms somehow.
I've seen almost two dozen Dr's since April 2012. My PCP, ENT, neurologists, neurotologist,   endocrinologist, ophthalmologist, neurosurgeon, neuroendocrinologist, urgent care dr's, and ER Dr's. 99% of them have been useless, uninformed, and unwilling to admit that this cyst could be causing any problems. I've left many appointments in tears out of extreme frustration. I've had the Dr's that refuse to look at the lengthy paperwork you just spent half an hour filling out, ones that only want your top 3 symptoms (cuz that's the best way to get an accurate diagnosis...Smh), ones that tell you at the beginning of the appointment that they don't believe your symptoms are neurologically related, ones that try to convince you that what you're feeling isn't REALLY what you're feeling.. (seriously, I think I know what I am or am not feeling), ones that don't even introduce themselves before telling you they see a handful of pineal cysts every day and they never cause issues, the ones that avoid the topic altogether pretending that they didn't hear you or your complaints, ones that try to tell you it's pseudotumorcerebri (I'm sorry, but wtf is the cyst, if NOT a pseudotumor..?!), the ones who insist your balance problems are ear related -even tho all your tests are normal and your EAR-nose-throat Dr already ruled that out, the ones that are more interested in their Starbucks drink than your symptoms, the ones that patronize you, treat you like you're 5 years old, and avoid-deny-avoid-deny-avoid-deny until they're blue in the face... I asked this last neuro since he didn't believe any of my symptoms would be those related to the cyst, what symptoms WOULD be related then...And that's when he proceeded to pick up the paperwork he was writing on, ignored me asking the question a second time, and escorted me out of the office -appointment over.
And then we move on to the blatant lies they tell... like should your cyst show growth or change, then we need to be concerned. But in just 7 short months the MRI reports stated 30%
growth, and there is obvious changes in shape between MRI's that everyone can see (and not just with the cyst, but other significant areas in the brain)...except Dr's. So now the excuse is, well...it depends on the slice, who measured it, etc... Yeah. I bet it also depends on who sneezed, what time of day, if it rained on the plains in Spain, if the radiologists best friends grandmother's goldfish died that day...the list goes on! I just don't understand why they refuse to consider the possibility that this foreign object, something that isn't naturally occurring or supposed to be there, is an issue. I've been told that my symptoms aren't neurological, that  stress is causing my symptoms, that this is nothing to be concerned about, that what I'm feeling isn't REALLY what I'm feeling... I'm sorry, you're not in my body, you can't possibly tell me what I am or am NOT feeling. Stress may amplify my symptoms, but it isn't what CAUSED my symptoms. And, I guarantee if this was in their heads, their daughter or sister or mother's heads, they would take it more seriously!
Why did they even bother to get into medicine, if they refuse to accept and acknowledge suffering in people..? Just because it isn't common, doesn't mean it doesn't exist. If one more Dr tells me, "I can tell you what you DON'T have, but I don't know what's wrong with you...but it's definitely NOT the cyst!" and "good luck!", I might just punch 'em!!!!
In the meantime, I'm continuing my search for someone to believe me, someone to fix this, and to prove the rest all wrong! Cuz when I have proof that this was causing issues, I WILL be returning to EVERY Dr who laughed at me, dismissed me, and insinuated I'm crazy, and give them a HUGE piece of my mind!

Seriously, do I have to be on my death bed before a Dr will actually listen and DO something?! The longer they wait for hydrocephalus to set in nice and big, the more they are compromising my brain!! It should be considered malpractice and medical negligence to be treated as disrespectfully as I have been treated on such a consistent basis!

Doctor.
Hmph.

Enigmatic Evidence : The Symptoms.....

Other than the vertigo (which is constant), I developed balance issues, severe and constant headaches, eye pain and fatigue, hair loss (I'm talking about patches of hair missing,as well as thinning), intermittent nausea, visual disturbances (lightning flashes, problems focusing), depth perception issues. memory and cognitive problems, along with other minor things that I was unaware of at the time could be contributed to the cyst.
Now, seven months after the initial discovery, my symptoms have progressively gotten worse. the vertigo is still there all the time, I've finally been diagnosed with Ataxia for balance/walking issues, my headaches which are constant went from no less than a 5 to no less than an 8 and have turned into more constant head pressure (like a basketball being pumped up inside your head, or like wearing a helmet 3 sizes too small) instead of headaches, my eyes feel like someone is squeezing them from behind and lights hurt them, it causes pain to look in any direction, but especially up, the lightning flashes are more frequent and more intense, my vision goes from normal to tunnel and back with my heartbeat when I cough/sneeze/blow my nose/strain of any kind, focusing is like a digital camera-blurry to focused, but when I focus on something smaller my eyes are more jerking to the side uncontrollably, my depth perception is worse causing me to either drop or run into things quite often, peripheral vision is greying/blurred and feels like things are closing in on me all the time, memory problems are worse and am becoming more dyslexic, I have erratic sleep cycles and am always tired, my menstrual cycle is completely screwed up, I've been swallowing wrong way too often to be comfortable with it, I've had trouble with my speech (slur/stutter), I've become extremely irritable and impatient, have trouble regulating body temperature, and am very lethargic. I can no longer lay flat as the pressure in my head builds and is so painful, it often wakes me up.
One of the major issues I discovered was when I had a fever, was my head pressure and pain were so excruciating, I just wanted someone to stab me in the head with an ice pick!  Turns out that if you have increased intracranial pressure and you get a fever, it causes the pressure in your head to rise significantly. Like quadruple, significantly. Like if someone doesn't chop your head off soon to end the pain you will spontaneously combust, significantly...
Problem is, neurologists and other Dr's don't believe that what you're going through is related to the cyst, but try to blame it on stress, anxiety, or you being a hypochondriac. I've been told by multiple Dr's that I need a psych eval, that I'm creating or making up my symptoms. I ask you, what would it benefit me to make up these issues? Do they honestly think that I WANT to feel like this all day every day? Are they out of their minds?! Who WANTS to live like this!?!

Discovering the Unacknowledged Foreign Object (UFO)

One beautiful day in April of 2012, I was struck with a debilitating bout of vertigo. As soon as I got my wits back about me, I made my way to the ever ignorant emergency room where I was told I simply had an ear infection, and that likely caused the vertigo. I asked when the dizziness would subside and was told when the ear infection clears up, the vertigo would disappear. But it didn't. And I didn't have an ear infection.
I was then referred to an ENT on the thought that my ear drum might have ruptured, creating the vertigo. Not the case. I had an amazing ENT, who ran multiple tests to figure out where my balance problems and dizziness was stemming from.He ran hearing tests (passed perfectly), balance tests (so not fun, but again..passed perfectly), blood work (all perfectly normal results), and then last try was an MRI. It was the MRI that finally showed something!! While everything in my brain looked great, there was a pineal gland cyst.
I was told it was incidental and nothing to be concerned about, but let's be honest, if you were told there was a cyst in the center of your brain, wouldn't you be just a little concerned? Yeah, me too.
My awesome ENT referred me to a neurologist since nothing I was experiencing was ear related. However, that neurologist was no help, looked at me like I was a nut case, tried to give me some prescription for head aches I was now getting non stop and sent me on my way. The medication was awful, I had horrible side effects and quickly stopped taking it. I then began my search on the pineal cyst, thinking there must be something to this, and discovered that I was not alone in what I was dealing with, as there were many others struggling with the exact same symptoms I was, and they all had this cyst! So I started googling Symptomatic Pineal Cyst and find that they are considered rare and most Dr's don't believe they cause any symptoms whatsoever. Great. I'd be in for a fight, but I had no idea the fight that was waiting for me.......

I have a what...!? WHERE!?!

    What is this anomaly called a pineal cyst? This thing that Dr's refuse to acknowledge? This alien that took up residence in the center of my brain, this squatter... this, leech.
     What is it, why is it there, why don't Dr's seem to care? If I had those answers, I wouldn't be stuck in the rut that I'm in. But! This is what I know....

This lesion/mass attached to the little known pineal gland seeded in the center of your brain and is almost as unrecognized as the gland itself. Other than it's anatomical location, most Dr's don't know what the gland is responsible for and refuse to acknowledge that a seemingly benign cystic lesion on it is anything to be concerned about. Most endocrinologists don't even think it's part of the endocrine system and can't tell you much about it... nor can neurologists, and especially not primary care physicians.

Basically, a cyst is defined as a benign liquid filed sac. No one knows exactly why or how these develop. What's more, there is a type of benign tumor that presents as a cyst in imaging. Dr's don't feel as if a benign cyst is anything to be concerned about, especially one that's located in the center of your brain. So, unless one is large enough to be causing hydrocephalus, they simply brush them off as incidental, refusing to acknowledge any potential issues that could arise from them.

So, how did mine get discovered..? Funny you should ask. Take a seat, you might be here a while...