Emergency Revision #1

Well after one emergency surgery, 2 additional incisions and 11 lbs of CSF (Cerebrospinal fluid) removed from my abdomen - I'm finally home!
I guess in order for you to know whats taken place over the past few days, I have to go back to the beginning of last week. I will do my best to try to accurately explain what has happened, but this past week has been a complete blur so forgive me if I leave something out.

Since having the setting changed on my LP shunt on Aug. 22, the swelling at the incision site on my spine and my stomach continued to INCREASINGLY get worse by the minute. (I would post pictures of how big they were but unfortunately I've already seen the look on my family's face as I forced them to repeatedly look at it and I do not want to cause any vomiting so early in the morning!) My headaches continued to worsen and I was at the point where I thought I would just die if I did not get some type of relief soon. I immediately began trying to get ahold of my surgeon as I knew something was not right.

On Wed., August 31, my surgeon's PA called me to see how I had adjusted to the new setting, unaware of the messages I had been leaving. When I began to explain what was going on she immediately told me to come into the office the next morning to see her. She also advised me that she would try to get a ultrasound set up for after my appointment to look at the shunt and make sure everything was working properly.

The next morning I decided to go into work for a few hours before my appointment. By the time I arrived at the office the surgeons office was calling me asking if I could come to the hospital first for the ultrasound. Since it's about and hour away I told them I would be there as soon as I could.
I arrive at USA Hospital and was immediately taken back. One panicky tech and 45 min. later I was on my way the see the surgeon. I did not even get through the office doors and he was standing there with his PA and a resident asking me to lift my shirt so he could take a look. Immediately, he told them to get general surgery on the phone and set up surgery for first thing the next morning. This is when the waterworks show began. Surgery? What? WHY??

Apparently because of previous scar tissue from my C-section, of my second child, my body was not absorbing the spinal fluid as it should and I now had a large pocket of fluid accumulating in my abdomen and backing up into my spine. "The fact of the matter is if we do not get it out it will become septic!"
I left his office a complete emotional basketcase and looking back now wonder what those driving beside me on I-10 thought as I sobed hysterically while driving 40mph. I did not want another surgery! I've only had this stupid thing in for 8 weeks and somethings already wrong!
Surgery was set for 11:00 the next day. As I re-played the days events in my head, all I could think is "Please God - don't let this be happening." But it was.
My husband raced home from Georgia, my sister agreed to pick up the girls from school and my parents were all set to be at the hospital with me.

As I was being prepped for surgery, so many things were unclear. Nobody could tell me exactly what they were going to do, how long it would take or what the chances of this happening again are. All they knew is that the shunt had to be moved and the fluid had to come out. How they were going to do this, they were unsure of until they got in there.

The surgery took a little over 3 hours, I think, and they moved the tubing to above my liver. The ended up removing over 11 lbs of fluid from my abdomen and having to make an incision in my belly button and re-open my already sore abdomen scar. I awoke in so much pain that even the 10mg of morphine every 2 hours offered no relief.

I am bruised from my back around to my belly button on the right side, my right hip feels as if they repeatedly hit it with a bat while I was asleep and the pain in my abdomen alone is enough to make me want to curl up in a ball and cry. (However, I am positive this will only make the pain worse.) Two days in the hospital with some amazing nurses and I was able to come home yesterday.

I am still not exactly sure if the tubing came loose from the valve or if my body is just not capable of absorbing the spinal fluid. I was not able to get a real clear answer out of anyone I asked. I do however know that I hope this is the first and last revision I ever have to undergo. While some may think lying around and being waited on hand and foot is the life, I must say it's not the life for me!!

I would not wish this pain or this disease upon anyone or anything. My heart breaks for the children who suffer in silence or who are mis-diagnosed with this. Unfortunately, there are not alot of options when it comes to those suffering with ICH and AC. So for now I will pray that medical technology continues to advance each and every day and the God lays His every loving hand upon those who are suffering and is able to offer them some type of hope and relief for a pain free future!

Many Blessings,
Jessica

LP Shunt

So Tuesday was the BIG visit with the Neurosurgeon. I have to say the overall the news was very encouraging!! Given my current vision, which is basically none in my right eye, the decision to do a lumbar shunt was made, within the next week. The encouraging part: No skull drilling, no head shaving, less recovery time and the duration of surgery is significantly less.
So what does this mean???
Well, they will insert the "catheter" like tube and silicone mechanism you see above into my lower spine area. It will have a larger tube, at the other end,  that will then drain the excess CSF fluid into my abdominal cavity, where it will be absorbed. The control valve, which has 5 settings,  will be placed under the skin next to my spine and can be adjusted with a magnet, if needed. Three small incisions (spine, side and abdomen),  hour to two hour surgery and a few days in hospital! All good news.
The tough part will be the days to follow coming home. For 10 days I will not be able to do anything at all. (If you know me then you know that this part is going to be extremely tough.) The reason for this is to allow your body to adjust to the new CSF pressure. They will set the drainage to a medium level, to begin with and it must stay there for about 30 days. If I am not feeling any relief after the first 30 days then they can adjust the drainage, in office, with the magnet.
The worst part of this is I can expect to have what is called a low pressure headache for the first few weeks. This is considered normal. Painful but normal. This is caused from the drop in CSF pressure levels and can be unbearable.
The brain normally sits inside a “bag” filled with spinal fluid which extends down from the skull into the spine. The “bag” consists of membranes called the meninges (as in meningitis). The CSF fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low, the brain may “sag” downward when the patient is upright, stretching the meninges and nerves lining the brain and causing SEVERE pain.
These are the same type of "headaches" I get after a spinal tap and from what he said, until my body gets accustomed to the lower pressure, I will have a continual "spinal" headache. This is the part I am not looking forward to the most.
There are of course risks and complications as there are with any surgery, but I really think the benefits out weigh them at this point.
However, I know that once I get over the initial "hump" things should increasingly get better. The goal is to have my vision be somewhat restored and the daily pain subside.
I am truly blessed to have such a wonderful support system, whom I could not get through the day to day without. I know that with them and God by my side I will be able to survive those first painful days and I look forward to a much brighter future ahead.

Count your BLESSINGS.........

Ever been so tired of being so tired? So completely exhausted at the end of the day that your not quite sure how you will make it through?

Well that's exactly  how I have felt lately. Acting as a single parent, being so swamped at work and continuously feeling worse each day has only added to my exhaustion. I have quickly learned that not even caffeine injected directly into my veins seems to help!
Since my last post I have had several more tests, including a MRI of brain and cervical spine. While this is one of the easiest test to take, it is the one that I hate the most, partially because it is the one that delivers the worst results. While the results are often the same, it the direction that my neurologist takes that varies depending upon how large the monster in my head has become. This go around - the news was what I expected....... a change in size.

After all I have had to endure over the last several years, I have learned to become fully aware of my own body, my limitations and most importantly when something just isn't right. Well my body has been telling me something was not right for a few months. I have been VERY tired and in ALOT of pain. My head and neck have hurt so bad recently that every morning when I embrace the porcelain goddess, I contemplate throwing in the towel, crawling back into bed and staying there until brain transplants become legal. But I know where that mentality will get me......in the bed, hooked to machines and a personal attendant who wakes me every 4 hours to take my vitals. While I can't deny I like the thought of a personal attendant (under different circumstances), I do not welcome all that comes with it.

Since I have been having this weird inner convulsing thing going on, nothing like those of which you see on America's Best Dance Crew, my Doc ordered a EEG a few weeks ago. The results of it were a fresh orangy smell, very messy hair and a epilepsy disorder caused by the increased pressure. I have know for several years that I have a seizure disorder that results from the AC. But most of what I experienced in the past was full fledged fish out of the water seizures. (Well except the one time I had 15 in a 5 minute time frame. Want to freak out you doctors - flop like a water deprived fish, check into the hospital for 6 days and talk like mush mouth...works every time!!) However, recently all of the convulsing has been felt on the inside with very little outward activity. I probably would not even have realized it if it were not for Corey saying I was zoning out and twitching one night when we were sitting together on the couch. I know what your thinking but I was not intentionally zoning out....not this time anyway. After that I became more in tune to what I was feeling. Now,   I wish I would have just continued to zone out, so much easier when you don't acknowledge there's a problem.

DENIAL...DENIAL...DENIAL...

More recently - today I had to have a visual field and the pressure checked in my eyes. Poor Man's MRI, or so the Opthamologist says. It showed that since my last check up, over 45% more of the peripheral vision in my right eye has been lost and reiterated exactly what my doctors have told me. Again, not a real shocker since I have been experiencing some visual disturbances. When I say disturbances I am referring to the little man who keeps flickering the light on and off in my right eye and then he leaves and forgets to flip the switch back to the "on' position prior to his departure. It's kind of like when your taking a shower and your kids think its funny to turn the light off and run out of the room laughing. Takes a little while for your eyes to adjust but when they do..... you rinse the burning soap out, search for a dry towel to dry off and race to catch those little boogers. At this point I am still trying to get the burning soap out.

And it's the little boogers that keep me going. That MAKE me get up each day, FORCE me to face what it holds and REMIND me to thank my Creator for blessing me with them. Because without them, well I am not sure I want to go there.

"Thank God from whom ALL BLESSINGS FLOW!!"

"Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken" Psalm 55:22

Many Blessings,
Jessica Smith

We can not rely on our own understandings.....

The last couple weeks have been a roller coaster ride, with no option of stopping the ride and getting off. Each day has challenged me emotionally, physically and most importantly spiritually. For the most part I can handle the emotional and the physical portion, because I have somehow perfected the art of masking of my feelings and my pain. But when my faith and the foundation in which God has built is challenged, I become a complete mess.
I am a firm believer that God has His hand in all aspects of our lives, even when we feel like we have been abandoned and all hope is lost... He is there, just waiting patiently to help us pick up the pieces. It's how we decide to interpret His instructions and discern His voice that sometimes leaves us feeling the way I have been.
I have been praying faithfully for things to change but it was not until I joined a daily devotional group that I was reminded that I am not supposed to try to figure it all out alone. I am not to worry and carry all of these burdens alone! God has blessed me with other Christians to share my worries, my pains, my concerns and most importantly my love for Him.

"Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts." COLOSSIANS 3:16

Being reminded that I am not alone, struggling with THIS LIFE, has renewed my "spiritual lull" and given me the courage to stand tall and face the days to come. We all need a reminder sometimes.. the reminder that whatever life throws your way- you are NOT ALONE, so do not try to carry life's burdens alone. Seek out other Christians to share your worries and pains, your joys and accomplishments and remember to always delight in the Lord!!

In the past 2 weeks, my husband has left to go back out of town until mid-April, "A" has not had a single green light at school, I reached my maximum stress level at work (some of which I have brought upon myself), had an appointment with the neurosurgeon that did not go the way I hoped, have had to have blood taken three separate times (why they could not have gotten all they wanted the first time is beyond me.. I think they find pleasure in poking me), visited with my neurologist who informed me of a few things I would have rather not heard, thought I was going die from lack of air ( a lovely side effect to one of my medications), come to the realization that all 13 year old girls are complete drama queens and have even contemplated dressing up as one for a brief second and going to "K" school to remind them that they are only 13 and YES he rules of life to apply to them! and think I had a full fledged nervous breakdown that involved a glass bowl falling out of the cupboard breaking on my head and then slipping and falling in "A"s puddle of bath water she tracked into the hall, as I went to get the broom to clean up the mess (I think you get the picture...), all while perfecting the art of masking my pain.
So can you see why I have been on that roller coaster I described at the beginning of this post? I promise I would have loved to get off and stop the ride long before the nervous breakdown.... but I just could not find the emergency stop button.
I will have to post on my doctor's visits later because for now I am going to enjoy the beautiful day that the Lord has made with my girls! I will leave you with one of my favorite verses:
“‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’ Luke 10:27

Conditions.. Conditions.. Conditions...

A couple months ago I happened to meet this very fascinating Neurosurgeon resident at the local hospital where I was undergoing some tests. (Yes, LV I am referring to you! :)) Being young, eager and not yet  hardened by a heavy workload and long exhausting hours she is intrigued by my conditions. (Although, she was not humored by my suggestion of the possibility of me being the first brain transplant recipient.)
Yes, I said conditions. In case I have not said this before or went into great detail let me explain a little. I have a  rare type of Brain tumor known as a Arachnoid Cyst. Below is an actual picture of my brain showing the AC.

Condition #1: Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord. Arachnoid cysts around the spinal cord compress the spinal cord or nerve roots and cause symptoms such as progressive back and leg pain and tingling or numbness in the legs or arms. They constitute for approximately 1% of intracranial masses.
However, mine is a little more unique because mine is not between the brain and spinal cord. The largest one I have is located in the Empty Sella of the brain with it's roots embedded into my pituitary gland (this causes my head to swell severely on the right side because my pituitary is now displaced). The second and third ones are located at the base of my skull, close to the tip of my spinal cord. Therefore, making it harder to correctly diagnose and even harder to treat. Typical symptoms of an arachnoid cyst around the brain include severe headaches, nausea and vomiting, seizures, hearing and visual disturbances, vertigo,  difficulties with balance and walking, memory loss, confusion and mood swings. Untreated, arachnoid cysts may cause permanent severe neurological damage when progressive expansion of the cyst(s) or bleeding into the cyst injures the brain .

Condition #2: Intercrainal Hypertension
Increased intracranial pressure can be due to a rise in cerebrospinal fluid pressure. It can also be due to increased pressure within the brain matter caused by a mass (such as a tumor), bleeding into the brain, fluid around the brain, or swelling within the brain matter itself.
Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply (the arteries and veins known as the vasculature) that the brain requires to function and the brain itself. Under normal circumstances, these components work together in a delicate balance. A pressure and volume relationship exists between CSF, the brain and the vasculature. But since the skull is made of bone and cannot expand, an increase in the volume of any one component is at the expense of the other two components. For example, if the brain swells and becomes enlarged, it simultaneously compresses blood vessels, causing the sub-arachnoid space to fill with more spinal fluid. This results in an increase in intracranial pressure (i.e. cerebrospinal fluid pressure), as well as a decrease in blood flow.
CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. CSF is produced at a site within the brain called the choroid plexus, which generates about 400-500 ml. (one pint) of the fluid each day or approximately 0.3 cc per minute. (The total volume of CSF in the skull at any given time is around 140 ml. That means the body produces, absorbs and replenishes the total volume of CSF about 3-4 times daily.)
An increase in intracranial pressure is a serious medical problem. The pressure itself can damage the brain or spinal cord by pressing on important brain structures and by restricting blood flow into the brain. If the increased pressure pushes on important brain structures and blood vessels, it can lead to serious, permanent problems or even death.
In order to determine if your CSF is elevated you have to have frequent pressure checks. My last one came in at 245. It's my understanding that for my size and age I should be around 180. While those two numbers do not seem to far apart in the spinal fluid measuring world there's a huge gap.

Condition #3 Bulging Disk

A bulging disk is a condition related to the spine, usually the lumbar, or lower back, that occurs when a disk bulges through a crevice in the spine.  Although, mine are at the base of my neck located at C-5 and C-6. Disks are the soft, gelatinous material that cushions the vertebrae of the spine. A bulging disk occurs when the disk shifts out of its normal radius and most often occurs simply as a result of age. A bulging disk is different from a herniated disk in that a bulging disk typically occurs gradually over time rather than suddenly. A herniated disk is often the result of an injury or trauma to the spine. In the majority of patients who experience a bulging disk, there is no pain unless the disk becomes herniated or protrudes into a nerve. Well you guessed it, mine are caused by the increased pressure and impinge upon nerves therefore causing lots of neck pain and tightness.

Sounds fun right? Well let me assure you that I can think of several other ways to describe fun!
So with the combination of the CSF pressure and the AC, LV  was ecstatic to see that I have started a blog giving a little insight into what it is like living a day in  my shoes. I am hoping with her help and the help of others that technology will advance and relief will soon be on the horizon for people like me. I know what you are thinking, is that possible?? People like you?? Well, people with either one of these conditions.
So thank you in advance LV for your help and your support. Thank you for taking an interest and most of all thank you to all of you who follow along.
God Bless!!

I am not my Disease!!

I was watching an episode of Royal Pains the other night and it was about a guy who had MS. His motto was "I am not my disease".
How true this stands for anyone with any type of illness. I know for me I hate being known as the girl who has the brain tumor. Sometimes I feel like people think they have to treat me special or talk to me like differently because of my condition. While others avoid me altogether. Hey - it's not contagious!!
I can assure you, while yes I do have brain damage, I am fully capable of comprehending what you may be saying to me and I can do almost anything that anyone else can. I may have to write myself a note or two to remind me things so I do not forget, but if I tell you I will do something I am going to do it to the best of my capabilities and then some. Partially because I am a little, ok a lot, controlling and I never want anyone to think that I am MY disease.  I may not remember who was in my senior class ** years ago or what I wore to work last week, but hey I have brain damage remember??
You have to learn to become your own advocate when dealing with something as unique and unknown as myself. No one knows your body more than you and the more you educate your self on your condition, the more you will be able to determine what the best action for treatment is. You have to educate yourself, become familiar with your disease and research all options for treatment. You DO NOT have to become your disease.
When you become your disease you admit defeat, you give up and you let it control your life. I truly believe that your mental state and outlook is over 90% of your battle.
Yes, I have really bad days. Yes, sometimes I wish I could just crawl back into bed and stay there. Yes, there are days where I throw myself a little pity party with party hats, streamers and a guest list of one. But these days are far and few between. Because when I get like this I have to remember that God put me here for a reason and He blessed me with this for a reason. (Oh.. and I am horrible at pity parties.) So I just have to pull myself together, put on my big girl panties and deal with it.
Several months ago when I found out that the tumor was back for a third time. It is bigger, badder and it brought two of its friends. I have to admit - I freaked, had a long pity party, freaked a little more, cried daily and then I was able to finally pull myself together. It took me a while before I would even tell anyone outside my immediate family because I did not want to have to answer a thousand questions, be looked at as poor pitiful Jessica and I was afraid. Maybe if I did not say it out loud it would just go away. WRONG!!
But going through this process made it easier for me to face the facts when I did decide to start telling close friends and extended family. It was almost like I needed to grieve privately first so that I could prepare myself for the overwhelming whirlwind that I knew was coming.
I am horrible at sharing my feelings publicly and when I am forced to do so I often cave emotionally.
Thankfully I do not have to do it alone as I always have God by my side. To laugh when I laugh and cry when I cry!
Many Blessings!

Dr. Quack

So today was a rough day.
It all started with a morning of endless wardrobe changes before finally settling on something I started with. Then I awoke my 4 year old with my sweet rendition of You are My Sunshine, as I usually do, only to have her cry hysterically because she wanted to me to sing Little Bunny Foo Foo instead, followed by uncontrollable whining because her leg was asleep. If you are a momma, you can understand where I am coming from here! Patience is a virtue and ohhh was mine being tested.
My day at work was filled with dismantling displays and packing samples into a box truck to get ready for a home builder show I am working this weekend. While there was plenty of help from some of my male co-workers, I just could not get it together today.
This was just one of those days were I have a severe case of nausea that I just can not shake. As my day progressed, so did my nausea. In addition, my head hurt so bad that I took enough medication that it should have put a quarter horse down. However, I saw no relief.
But what I really want to share with you is the phone call I received. It was in reference to "Dr. Quack."
For those of you that do not know, that is my previous neurologist. See back in August I filed a formal complaint against him with the state Board of Medical Examiners. My complaint went something like this:
Dear ABME,
Dr. Quack has treated me for the last 3 years. Over this time frame he has poked, scanned, shocked, drugged and re-poked me. He has given me medication that has caused my condition to worsen, cyst to grow and pressure to increase rapidly. All of this resulted in an exotic 7 day 6 night stay in my local hospital, where he came to visit me without authorization and a turkey thermometer in hand. Upon his arrival smelling intoxicated, he sneaked past nurses station, came into my suite and re-poked me. When he attempted to remove the turkey thermometer he yanked it out of my spine, screamed at nurse who busted him and threw the needle on floor. Then left room to never be seen again. His negligence caused a series of events including, seizures, raised blood pressure, swelling of entire body (internally and externally), liver to swell, loss of feeling in legs and feet and a few other unmentionable side effects, as well as a transfer to a larger hospital via my own personal ambulance.
Therefore, I think Dr. Quack should be questioned in regards to his methods of treatment.
Thank you for you time,
Upset patient with brain dysfunction

So.... this well written complaint warented my own case worker and board of investigators. While I have spoken with them quite a few times, prior to today, they were calling me today to let me know they interviewed him yesterday with my letter and records in hand. Great news!! What happened??
Well, I don't know because they will not tell me what he said and I will not be privileged to any paperwork submitted by him as a rebuttal. What???????? Then why did they call??
"Courtesy call mam, to let you know we are on top of your complaint."
Ok... thanks, I guess. Glad your on top of it.
The case worker did tell me that when the investigation is complete, in 6 months or so, the will send me a written response. I asked them how many times was this doctor allowed to continue to do this ( he already has several other complaints filled against him, as well as he has been fined and license previously suspended) and I was told there are no set guidelines in my state and each complaint is evaluated on a case by case basis.
Is that crazy or what?? No set guidelines?? Does this mean that that anyone can get a Internet doctorate diploma in my state to practice medicine? Furthermore, in the area dealing with the brain and central nervous system are there not supposed to be stricter guidelines? Guess not!!!
So for tonight my prayer will be that those who are still under the care of Dr Quack come to their senses and seek out other options.
In case you are wondering, I have a awesome new neurologist who has even practiced on a pig spine before giving me a specific type of nerve block to the brain, to ensure he was doing the procedure correctly.  He is extreamly intelligent and is familiar with my rare condition.

Praise God for the blessing in disguise!!

From The Beginning

Ok.. so I jumped on the bandwagon. I have decided to start my own blog. I have given this lots of  prayerful consideration and finally feel like now's the time. Why now you ask? Well I am not really sure. Maybe its the endless phone calls I have received or just God pushing me. Either way here I am :)
In order to understand the present I will have to take you back a few years, a short walk down memory lane... well what I can remember anyway!
It all started in September of 2001. I was at work one nice September afternoon when I awoke to the realization that I was in the back of an ambulance because I had undergone several seizures in a few minutes time. I was rushed to the local hospital where they told me I was suffering from heat exhaustion (in mid September???) and my potassium was low.
Over the next several months I suffered from intense crippling headaches, lots of seizures, loss of Peripheral vision, confusion, anxiety and the list goes on. I saw several doctors and the inside of every local ER within a 100 mile radius. Still no answers.
Finally after a visit to my family doctor he sent me to a neurologist who diagnosed me with a large Rathky's Cleft Cyst that was compressing my optic chasim and was causing my pituitary gland to displaced.
Within a few weeks I had an appointment with a local neurosurgeon and a date was set to remove the cyst -
Feb. 2, 2002. I was told I would have to learn to walk, talk and read all over again. Not something a 24 year old mother of a 3year old wants to hear. But my faith was strong and I put my trust
in God.
In the recovery room I was walking, talking and even joking with the doctors and nurses and my 3 week stay turned into only 3 days. I was determined that I was not going to let the "norm" dictate who I was or who I would become.
Fast Forward to 2007: I am happily married to the love of my life and we have two beautiful daughters. "K" who is nine and "A" who is 6 months old.  My symptoms begin to re-occur and everyday tasks were becoming more and more difficult. After routine visit to my neurologist he sent me to have a MRI.
Before I could even get off the exam table the radiologist came out to let me confirm what I already knew. "Mam, you have a massive Arachnoid Cyst that is the size of a grapefruit".
"Hmmmm.... I thought it was a Rathky's Cleft", I replied.
"No Mam", he said - "its definitely an Arachnoid and its the largest I have ever seen. Well actually I never seen one, except in text books. You are going to need someone to operate immediately and unfortunately, I do not think you will find the help you need locally".
"Ok, thank you".
I mean I think its only right to thank the poor panicky radiologist who just told me I have the largest cyst he's ever seen! Don't you?
So.. after alot of research and prayers I found the one and only Dr. at the time who would even consider operating because of the size and location. Dr. S in California. Over 500 miles away.
So what a girl to do with a deformed head and a cyst the size of a grapefruit? Well board a plane of course (with my wonderful husband in tow), say lots of prayers and get ready to face the unknown for a second time.
This time would be different. Rather than shave my head and prepare for a full craniotomy, the Dr would access the cyst thru my right nostril using a laser. Nasal Endoscopic surgery. Newest cutting edge technology! Wow, I was impressed. Although I could not help but thinking about the Egyptians I had learned about in middle school who's brains were removed this way. Surely he would not accidentally grab my brain - right?
10 hours later, brain intact, I was looking into my poor, weeping husbands gorgeous blue eyes.  Everything was going to be fine. They were able to remove most of the cyst and plug my head with a piece of fatty tissue from my stomach. (Yes, my husband still calls me fat head). After 24 hours I was released from the hospital and able to go back to my hotel room until our follow up appt in a few days. I know what your thinking you only had to spend 24 hours in hospital after brain surgery??? Well, that's really my fault. In hindsight I probably should have stayed a couple more days but hey we were in California. This southern Alabama girl did not want spend a moment more stuck in a  hospital when I could have been shopping on Rodeo Drive or miss my chances of being selected for the Price is Right! That's one lesson I definitely learned the hard way.


So now your up to speed on the past.... Lets address the present!
Short Summary: Cyst is back and bigger than ever. Turns out plugging sinus cavity with fat is not such a good idea, as this can cause a slow CSF leak. Two brain surgeries cause scar tissue that can lead to intercranial hypertension (lamines terms: makes your head feel as if it going to self combust at any moment notice). Headaches have become worse and are now classified in a pain category all of their own, I grow more and more confused each day, My memory is slowly fading (now under certain circumstances this has worked to my benefit), my neck and upper back are always stiff and hurting, vision is slowly deteriorating and I become irritated very easily.
But the good news in all of this is that I REFUSE to let my illness control my life and dictate what type of person I am going to be. I have decided to face each new day with a smile on my face, love in my heart and let the Holy Spirit guide me on this journey. After all I am a mother to two of the most amazing children and if I were to let them see that is OK to give up, what kind of role model would I be??
I am not saying that each new day does not bring its own challenges, because it does. What I am saying is that it is up to us on how we deal with them.
I am hoping by starting this blog I might be able to help others see how God turns our misery into our ministry.
I hope you will join me as I (try) to post daily what is is like living with this illness and the blessings that I continue to receive because of it.