The Surgery

First things first........THANK YOU to each and everyone of you who said a prayer for me the morning of my surgery. I will never be able to put into words the overwhelming sense of peace I had that morning knowing that I had so many of my friends, family and even strangers all praying for a successful surgery!!

I arrived at the hospital, a little nervous, at 6:00 a.m. as instructed with my husband and my sweet "K" in tow. Immediately upon my arrival I came face to face with a 19 year old boy who was also set to have surgery. This young man had been driving over 90 mph and drinking when he wrapped his car around a tree. He had rods and pins sticking out of his left leg and was getting ready for his 3rd surgery. As we waited in registration I could not help but think about what him and his family must be going through. As I prayed for God's hand to be with him and his doctors that morning and the days to come, I realized how blessed I am.

They called me back to begin the prep pretty quickly and it was not long before JB came for a group prayer and I was saying my goodbyes to my sweet family. I was even blessed by a visit from 2 strangers, who were nurses and had seen the prayer request on FB, prior to being whisked away.  The last thing I remember is the very kind anesthesiologist saying he was going to give me something to help me relax and they would be putting me to sleep soon. 
When I awoke in recovery, I was in alot of pain. As I opened my eyes, my first thought was what had they done to my stomach because it felt like they had taken a skill saw to my abdomen. It wasn't long though and the recovery nurse was giving me something for pain and I dosed back off. The recovery room, however, is not a place to rest. It is filled with nurses running about and patients being wheeled in and out from various surgeries. I must say though, I commend all of you who work in this profession because some of what I saw and heard was not easy to swallow and the nurses there handled each and everyone of the patients with grace.
It was several hours before I was moved upstairs to a room but the recovery nurses allowed me to see all of my family, who had been waiting ever so patiently for the outcome.
According to Dr. M, everything went "perfectly and better than expected"!! (I think alot of it had to do with all of your prayers) The surgery itself took less time than expected, he was able to get the shunt in with no problems and was confident that I should have a far less expected recovery time than initially thought. PRAISE GOD!!
He did tell me later that he had to physically move a few muscles around in my abdomen and thread the catheter from my stomach to back with a metal rod, so some bruising and tenderness would be expected. But all in all everything looked good. He wanted me to get up and move around, as tolerated, as this would speed up the recovery process. What? No lying flat for 10 days?? This WAS good news :)
The first few days following the surgery I was in a severe amount of pain. But the good news is that it is incision related and not severe pain from my head. Yippee - maybe the shunt is working.!!
I have been having low pressure headaches but they are more uncomfortable than painful and nothing in comparison to what they were like prior to last week. My legs and hips hurt really bad upon standing, but I am told this is from the swelling of the nerves around my spine and should go away in a few days. My stomach is still real swollen (I do not foresee putting pants on anytime soon) and I am very tired. But I am not vomiting upon standing, no ringing in my ears and my head feels better than it has in years!!
I have yet to be able to stay upright for longer than a few hours and I am still spending more time in the bed than out, but I think alot of this is what you would expect with ANY surgery.
 I am hoping that another week of resting and taking it easy and I will be able to begin to resume somewhat of  "normal" activity.
So for now, I am praising God that everything went better than initially expected and I am looking forward to whatever  tomorrow might hold!!

Many Blessing,
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.

Is there a Silver Lining?

We often take for granted how good life is and forget how quickly things can take a turn for the worst.
While these last few years have not been a piece of cake for me, or my family, I would like to think that I have done my best to find the silver lining in  EVERY grey cloud along the way.
Although, lately I feel as if there is not a silver lining or a blue cloud in sight.
After LOTS of tests and procedures over the last few months I have been forced to face the realization that I am not going to get any better on my own, regardless of what I would like to think or what little magic pill I am forced to take.
I had a visual field that left the doctors telling me I have a 90% chance of going completely blind in the next few months. A nerve test that resulted in the confirmation that I have severe damage to my brain and right side of my body and a spinal tap that resulted in a elevated CSF pressure reading. Think that's alot to take in........ well you have not even heard the best.
Apparently the severe pain upon standing that followed the tap confirmed that I have a defective "ball valve" in my brain. What is the ball valve and Who the heck has a defective one? and why in the world am I the special one who gets the defective one? Is this some cruel joke??? Did I skip class the morning these were being handed out? I mean as if my already dysfunctional brain was not enough, now I get defective valve? If I were an old Buick they would put me down!
In my case a PT Cruiser, but hey that's a whole other post!
Learning this explains alot. It explains why some mornings upon awaking I throw up and others I don't. It explains why sometimes upon standing I get extremely dizzy, why I can only sleep flat on my back because lying any other way causes an extreme burning sensation, why I have so much pressure behind my eyes and a gazillion other things. See the defective valve thingy does not allow the CSF fluid into my brain or it's ventricles properly. Sometimes it rushes in and other times it trickles and apparently if it is stuck it can flood my brain and / or not flow at all.
So what does all of this mean? Well I will find out when I go see the surgeon on the 21st. Looks like there is a shunt in my future. I can not say that I have decided 100% (or even 10% for that matter) that I am on board with this option. While my neurologist does not think I have any other option and he assures me that I will see a dramatic improvement, I am terrified. Terrified of the operation, terrified of the potential complications, terrified by all of the stories I have heard and read about shunt malfunction but most of all -  terrified it will not work.
See truth be told - I am tired. Very tired!! Tired of being sick, tired of being in continual, non-stop agonizing pain, tired of being tested, poked and prodded and tired of watching my family watch me go through this.
I would not wish the ups and downs of this horrible "disease" upon anyone.
My poor sweet babies do not deserve this. Sometimes I feel like if I would just forget about it or suck it up - it would be so much easier on them. But then I have to remind myself that recognizing my limitations is what allows me to be able to get up and move forward with each day. It doesn't determine how fast I will move... just that I am moving and for right now I guess that's all I can ask.

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

What is normal....?

Well I think my get up and go has officially got up and went!
 I am really struggling lately with getting motivated to do anything that involves any effort on my part. Simple routine tasks, like getting out of bed in the morning, have become a complete struggle.
I am having an extremely difficult time getting adjusted to my medications and the new dose they "upted" me to. This past week I have felt like I had the flu (achy and sore all over), my throat is raw and has the appearance of ground hamburger meat and I am still having trouble breathing. (It's kind of hard to breathe when it feels like an elephant has planted his large rear on my chest!)
At my last visit with my doc he told me this was all normal and until they can get my meds leveled out and work out all the kinks, I would most likely feel this way. I just love being the one they choose to be the kink worker outer. I mean what a huge honor! "Routine blood work, close monitoring and daily supplements will all assist us in ensuring that we are on the right track." Blah..Blah.. Blah..
One thing he did tell me that was kind of surprising was that something I had told him previously, not sure what that was, made him pull the re-cap of my pathology report from my brain surgery in 2007. The report stated that the fluid taken from within the cyst had "a motor oil constancy", which apparently is not typical of a AC.
So, I am sure you know what my response to him was - "What is it typical of?"
His response - "Not sure".. What? How can he be not sure? I mean how does a motor oil consistency substance get into your brain and more importantly what is it? AGAIN - "NOT SURE"!!!
What he did assure me of was that he would be looking deeper into it and getting the full report to see if was able to shed any new light on the subject. Please, doc shed some light!!
You can imagine my surprise, as this was the first time I was told this. Why was this never mentioned before? and more importantly how come no one has ever looked into it? I mean I have know for a long time that I do not have the biggest brain on the block, but now you are going to tell me I have some sort of oily sludge inside my brain. Great!!
When I questioned him about why it is so difficult to just go in and remove the entire 5 quarts he told me is is not that simple. Seems that not only do I have a forgein substance lurking in the depths of the nooks and crannies of my main control panel, I also have a zero chance of having the navel sized cyst completely removed due to its overly complicated location.
My next question: "Is this a ongoing battle I will have to continue to fight for the rest of  my life?" ANSWER: "Yes, Mrs. Smith, I am afraid so. I am so sorry." It will never get better and it will never go away. Regardless of how many operations, I may or may not need. My only hope at a somewhat normal life is medication, and lots of it, to try to stabilize the situation and testing to continue to learn as much as we can about my conditions.

While completely depressing news to hear, I have always know deep down inside that this was the case. I have always just been to afraid to ask. So after taking it all in.. my response "You don't know MY GOD because if you did you would know that with Him all things are possible!"
Smiling doc told me - " I know Your God, I know you and I know your not giving up without a fight. But I will say that is the first time I have ever, in all my years of practice, had a response quite like yours, but then again I have never had quite a patient like you either." I guess I will take that as a compliment!

Praise God for blessings we understand and Praise God for giving us the strength and direction during the times we don't.

Conditions..Conditions..Conditions.. PART II

Ok.. so now you have a little insight as to the medical diagnosis in which I have been labeled (See earlier post). Now let me tell you a little bit about how this effects my normal day to day life.
While asymptomatic AC's are not that rare, symptomatic are. 99% of them are found during routine autopsy's after death and patients do not present with any problems. But I am part of the lucky 1% that is symptomatic.
My main AC, due to it's location and size, causes me to have such horrible headaches that I can not stand the sound of any noise or the brightness of a simple house lamp. My vision is often left impaired and I see what is know as the classical "fireworks" or floaters daily. (It is currently compressing my optic chasm therefore causing vision problems. I have almost completely lost my peripheral vision in my right eye) I can not stand the sounds of simple things and talking on the phone just heightens the pain. I am not even sure headache is a good word to describe the pain, because when most people hear that word it is often not taken to seriously.
I awake every single day this way and go to bed each and every night with my head throbbing. I have not been able to enjoy the small things with my 4 year old, like swinging on a swing. Its this type of thing I miss the most. I guess part of me has just gotten used to living this way and has decided that I will not let it control my life or dictate who I am. I work a full time job and raise (2) beautiful children. I do all of the normal things most parents do such as rush kids from practice to games, cook, clean, volunteer my time to anything my children are a part of and serve as an Elder at my church. Yes, I stay pretty busy. I do not call out of work due to my condition. But unfortunately, miss alot of work due to tests and procedures. I face each and every day with a smile on my face and rely fully upon God and not my own understanding to carry me through.
Seizures are also a side effect to the AC. While I have not had one in a while, there is still a chance and frankly it scares me to death when I do. I once was admitted to the hospital after a round of 22 seizures in less than an hours time because I could not speak. My oldest said I sounded like mush mouth off of Fat Albert.
I find that lately I become more confused than normal and my memory is completely shot. I am told this is due to the damage that has been caused by the pressure of how large the AC was before. (It was the size of a lemon. My head is barely that big so how it fit in there is beyond me?) I have been experiencing shortness of breath lately along with abdominal pain. I am sure this is in part related to the 16 daily prescriptions I take. My hands and feet stay numb and it is becoming more difficult to use my right arm.

The Intercranial Hypertension just escalates all of the above. In addition, it makes my eyes feel like they are going to pop right out of my head (that would be a sight...), constant ringing in both ears,dizziness and double vision. But the worst part about having it is that I wake up every day throwing up. I am not sure if it is the transition from laying down to sitting up that causes the vomiting but irregardless it never fails. Most days it only last a short time in the morning but others, such as yesterday, stay with me all day. Feeling like your in your first trimester of pregnancy 24 hours a day 7 days a week, is very unwelcoming. Especially when there's nothing sweet to look forward to at the end of it all.

The uncoroperative disks cause alot of uncomfortableness and neck pain that radiates into my back. My neurosurgeon thinks that part of the disk issue is related to the ICH. He believes if we can get the pressure under control with one of the many horse pills they make me take than they may subside some.However, it's to early to tell.
So for now I will continue to take my medication, take care of my family and stare straight into the eyes of my disease and tell it I am not afraid.
 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

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!

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.