Todays visit and the not so good verdict...............

As most of you already know, things have not been easy since my last surgery.
Each day I feel worse and worse. I have completely neglected my family, friends, my church and abandoned all hopes of having a clean house!! (if you know me personally - this is bad)

I have been across the bay so many times in the past 4 weeks  to see my Dr that I am contemplating getting an apartment over there.

Last Tuesday I went in for a follow up appt and after taking one look at me, he immediately sent me to have a CT of the abdomen and a X-Ray like test.

I knew something was wrong. My head hurts to just turn it from side to side and you can forget about bending over to pick something up. Not to mention that it appears I am ready to give birth a record setting size child or possibly small safari animal. (The fact that 2 weeks ago while in CVS a lady congratulated me while reaching out to touch my belly - does not help!!!)

Late Friday my Dr called me to tell me he would like me to come in first thing this morning to discuss the results of the test. Upon arriving at his office today, and waiting 2 hours to be seen (I know this is off track - but 2 hours???!!!) he told my husband and I that the shunt has come out of the peritoneal cavity and is now coiled up in my abdomen causing the CSF to back up.  There are two "hypottenuating cysts" over 9 cm x 7.2cm in size. One in my pelvic area and the other "anterior to right rectus abdominis muscles". In English - I have two massive fluid filled cyst in my stomach and fluid is backing up around my brain and in my spine. This my friends is what we call a shunt malfunction. One of the very reasons I did not want to have this put in to begin with.

 My solution - TAKE IT OUT!!!!!

Well apparently this is not a very good solution and DR. M was not going for it. He told me that if I take it out I will go completely blind in just a short period of time. I would never be able to live with myself knowing that I could never see my sweet children's faces again.

So......... shunt revision #2 here we come. He will have to re-open the incision on my back and make a new one on the opposite side of my stomach. They will then try to tunnel the shunt through "virgin" tissue and pray that it stays in place and my body will begin to absorb the excess fluid.
Of course, I am not to thrilled with the idea of another surgery and I am very concerned about the possibility that this will not work, again.

As I looked at him teary eyed and expressed my concerns, reservations and I knew he was more than just some surgeon sitting listening. He, also teary eyed, cares. He really cares about my well being and wants to make sure that I continue to live life to the fullest. He is doing what God called him to do.

While I may not feel at peace with what the days ahead have in store for me, I am at peace knowing I am right where God wants me to be and for now that's good enough.

Post Lumbar Shunt Revision X-Ray

Below are pictures taken today (9-6-11) of my Lumbar Shunt during a X-Ray. Since I am still having swelling in my abdomen and around the valve my surgeon wanted to get an X-Ray to ensure the tubing has not come loose. According to him the tubing looks good and we just need to continue to watch swelling to see if my body will "adapt" to this foreign object or not.
So since I begged the tech for the disc I thought I would share these images with you.

This was taken from the side (Right to left) and as you can see there is ALOT of swelling in my stomach and the tubing itself appears to just be under the skin of my belly button. I must say I was surprised at the amount of "shunt" inside of me.

This image is taken from the front and the shunt shows up a little clearer here. This picture now explains why my right hip has been hurting so bad as it appears the tubing is very close to my hip bone. Again, can not believe how much tubing there is!!!



And last but not least is another side view (left to right). Here you can clearly see how big my back bulge, I call him BOB, really is. This image of the tubing is not very clear.

I know must of you probably think I'm crazy (this post I'm sure has nothing to do with that perception) but I really am a visual person so being able to see what's inside of me has really helped to understand it's purpose and meaning.

However, at this point whether I understand it or not I do not think my body likes it and I really afraid that even after 10 revisions my body will not accept it. While I continue to pray boldly that this is not the case I am also a realist, so if I do not show signs of improvement quickly then I think it will not be long before I'm checking back into my sterile resort for revision #2!

Thanks for continuing to let me share my story with you all!

Many Blessings,

Jessica

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

First Adjustment

Well it has been a little over 7 weeks since my LP shunt surgery and while I hoped and prayed this was going to be the answer,  now wish I would have never had it put in, in the first place!!!

My symptoms have all returned with an angry vengeance and are becoming less and less bearable. My head hurts so bad that I am wondering if is not worse now than it was prior to having the shunt put in. With Corey working out of town that leaves me to take care of the house and kids by myself and it is virtually impossible to do so while feeling the way I do.

I had my first adjustment to the valve on Monday at the Neuro's office. It took the PA about 15 min and was completely painless. She simply took this magnetic machine and moved it across the incision site, on my back, that then changed the setting of the valve. They turned down the setting, therefore allowing more fluid to be released through the shunt. Now the pressure will not have to get so high before it starts to drain. However, changing the setting is like starting all over again.

Over the last week I have been running a fever off and on, have severe low pressure headaches and the incision sites on both my stomach and back are swollen. My back looks like someone surgically inserted a grapefruit under my skin. It is so big and so tight that I am afraid it is going to rupture. I can not lay flat because it hurts extremely so bad. My stomach looks like I ready to birth a small elephant, but only on the right side. I have gained 12 pounds since the surgery and its all fluid retention. For some reason my abdominal cavity is not absorbing the fluid like it is supposed to.Words can not even begin to describe how uncomfortable I am right now.

When I saw the neurosurgeons PA last week I was told that sometimes it takes longer for your body to adjust and not everyone reacts the same as others to having the LP shunt. The fluid is not draining properly through the tubing and instead is accumulating around the valve (back) and incision site on my stomach. She immediately sent me to have an X-Ray to ensure the tubing was not tangled. I heard back from them two days later saying that the shunt itself looks good and if the fluid does not begin to subside they will do an abdominal ultrasound which will be able to provide more answers than the X-Ray can. I am not sure if they can see if the shunt is blocked through the X-Ray or not, I guess I will know soon enough. I was able to look at the X-Ray and I have to say I was shocked at the amount of tubing that is in my stomach. It look like a ball of yarn shoved into my abdomen. Even the X-Ray tech was taken back by the amount of tubing in there. As gross as it sounds, I have to admit it looked pretty cool!! :)

I did return back to work, part time, about three weeks after the surgery and now I am beginning to think I jumped the gun (as I often do). Simple tasks like sitting up are requiring far to much energy. I am so tired after being up for just a few hours and am then required to lay flat for several hours. This is making it very difficult to accomplish anything and unfortunately everyone and everything in my life is being neglected right now.

I hope that my doctors are right and eventually my body will get adjusted to this new device and I will begin to feel the relief I hoped and prayed would come. For now I will continue to suffer through the non-stop  pain and do the best I can with the cards I have been dealt.

Better explination of IH

 

The following information is taken right from the Intercranial Hypertension Research Foundation's website. For more information on this condition, how you can help and resources for those who suffer with this condition, please visit them at  http://ihrfoundation.org/.

I encourage you to seek out medical help immediately if you, or someone you know, has been diagnosed or may be suffering with this condition.

Life is to precious to waste!!

"Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension. We also provide assistance, education, and encouragement for individuals with chronic IH, their families and medical professionals.
Our mission is to discover why intracranial hypertension happens, along with new, effective treatments. Our ultimate goal is to find a cure."

Living with IH

"Like any chronic illness, chronic IH can impact both individuals and families physically, financially and emotionally.
If you’ve been diagnosed with IH, it’s important to know that this illness affects everyone differently. An IH diagnosis doesn’t necessarily mean that you will have to stop working or going to school or participating in activities that you enjoy. At the same time, it’s important to take of yourself and recognize that there is much that we don’t know about this illness. The best judge of your abilities is you.
Disability is an issue, especially disability due to loss of vision and/or chronic headache. Some individuals do become too sick to continue working or going to school. Simple, everyday tasks can become overwhelming and a formerly independent person may have to rely on others for help.
However, it’s worth repeating that each person’s experience with IH is different. Some people may experience a remission of their symptoms. For others, chronic IH can be cyclical, a pattern of remission and reoccurrence. And for some, the illness is truly chronic and does not go away. With research, we can learn more about the natural course of chronic IH. 

“But You Don’t Look Sick.”

Much of the time, someone with chronic IH may not “look” sick. Physical appearance can often be misleading and is not a good indicator of how well or sick a person with chronic IH may actually be.
It’s also important to remember that signs of chronic IH, such as papilledema, occur within the body, rather than externally and symptoms like a headache can only be felt by the person experiencing it. So, it’s not unusual for patients to feel frustrated when they try to convey their painful circumstances, despite looking “okay” on the outside. It can be equally frustrating for friends and family, who want to understand what is happening to their friend or relative.
Another mystery of chronic IH is that it can be variable. Sometimes, feeling sick occurs in waves. It’s quite possible to feel better for a short period of time, and then, feel worse again or vice-versa. (Sometimes this can happen in a short span of time, i.e. 5-10 minutes.) One hypothesis is that these variations may be due to fluctuations in CSF pressure. A sudden change in behavior or capabilities may be a sign of a change in intracranial pressure.   

Depression

Chronic illnesses in general and neurological illnesses like stroke have been associated with higher rates of depression. A 2007 study from the University of Toledo in Ohio recently found a high prevalence of depression among women with chronic headache. While there has not been formal research directly linking depression and chronic IH, it’s not uncommon for someone with chronic IH to experience depression.
Changes in sleep patterns, appetite, loss of motivation and self-esteem, feelings of guilt or blame, irritability and anger may be signs of depression. Recognizing depression is the first step to getting help. Counseling, especially with someone who has experience with issues relating to chronic illness, may be helpful. If anti-depressant medication is prescribed, it’s important that all doctors know about any other drugs that you are taking, especially other anti-depressants (such as tricyclic anti-depressants like amitriptyline, which may be used to treat chronic headache pain) that can potentially interact.
 

Financial Resources

The costs of medication, surgery, hospitalizations, doctors’ visits, and other medical expenses related to chronic IH can be significant. Loss of a job or wages as a result of being ill does not only impact income but since many people rely on employer-provided health insurance, it can affect health insurance coverage. 

There are government resources to help you find free or low-cost medical care and assist with your bills, including Supplemental Security Income (SSI) and Social Security Disability (SSDI). Many drug manufacturers run prescription assistance programs that provide free or discounted medication to those who are uninsured. In addition, certain religious groups also run social service organizations that help members of the same faith. If you belong to a church or religious institution, they often have resources to help parishioners or can direct you to places where help is available."

May God Bless all of you who suffer, have family member who suffer or have lost a love one to this disease! I will continue to keep all of you in ,my daily prayers.

God Bless,

Jessica

Three Weeks Post - OP

It has been almost 3 weeks since my shunt surgery and so far everything is "going way better than anticipated". The bruises are slowly fading, incisions are healing and the pressure in my head is starting to stabilize. There are a few new things I am going to have to get used to, such as the feeling of the tube draining the CSF into my stomach and the control valve bulging out of my back, but overall it is a small price to pay if it ultimately does what it is intended to do.

My neurosurgeon was absolutely amazed at my progress when I visited him last week for my post-op visit. He said my incisions were healing wonderfully, my bruising was minimal ( glad he thinks so) and all of the swelling will eventually go down. This was all music to my ears - especially the swelling since I have yet to be able to squeeze back into anything that does not have an elastic waistband. But more importantly than all of that - THE SHUNT SEEMS TO BE WORKING!!!!!!

While, yes, I do still have headaches they are not crippling. My head does not feel as if it is going to self combust at a moments notice. My eyes do not feel as if they are going to blow out of my head and my ears have finally "popped" back. I can hear! Yippee!! All great news!


Dr. M told me while he was amazed at my progress, especially given the fact that they had originally thought I would be down several weeks and after 2 weeks  he released me to "light" duty, he was not surprised. Apparently he has become well aware of my stubbornness and has learned that it is going to take alot more than a little brain or shunt surgery to keep me down!

While I would like to think I have gotten through this last few weeks all on my own, I know better. I know it is by the Grace of God that I have gotten this far. He was there guiding Dr. M on 7/7 @ 7, He was there lifting me up when I felt weak and He was there when I felt like I could not go on any further. But most importantly - He was there because all of you lifted me up in prayer and asked!

"For where two or three come together in my name, there am I with them." Matthew 18:20

I can affirm that I know I would not be this far in my recovery if I did not have all of you in my life. For that I am eternally grateful!!

To all of you who have called / text and checked in on me - THANK YOU!!
To all of you who have sent cards - THANK YOU!!
To all of you who have unexpectedly dropped off a hot delicious meal - THANK YOU!!
To all of you who have picked up / dropped off / kept my kids - THANK YOU!!
To my sweet "K" who has stepped up and been such a huge help - THANK YOU!!
and To my parents who have been here every step of the way the last few weeks making sure me and my girls had everything we could possibly need - THANK YOU!!!

May God continue to bless all of you as you have blessed me!

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.

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.. 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!

Truth or Speculation???

   

Eastern Shore disease cluster?

The Eastern Shore – which includes the burgeoning Baldwin County communities of Spanish Fort, Daphne, Montrose, Fairhope, Marlow, Fish River, Barnwell and Point Clear - in recent years has experienced high rates of rare cancers, including brain and neurological cancers, leukemias and lymphomas, as well as Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease.

Scientists will study Fairhope area this summer because of an apparently high number of rare cancers and neurological ailments. A team of scientists from Nebraska and Arizona plan to visit this summer to investigate what appears to be an unusually high number of rare cancers and neurological diseases showing up in Eastern Shore residents.

Shambaugh-Miller said scientists are coming to believe that the onset of some neurological diseases, as well as the relatively rare cancers seen on the Eastern Shore, may be triggered by a combination of genetic and environmental factors. Particularly unique, he said, is the relatively high number of MS cases seen in southwest Alabama.

"That's about 800 miles south of the MS line," Shambaugh-Miller said, explaining that MS typically occurs much farther north, in colder climates. "Any MS south of that line is extremely rare. It is very rare in subtropical areas. ... When I look at Fairhope and see a lot of MS, that triggered my involvement. You shouldn't have that number of MS cases in that area."

Since the research scientists announced their intention to come to the area, the state has followed up on an investigation started several years ago. The state effort involves interviewing the families of those afflicted.

State officials did not return calls seeking comment.

Rare conditions

The researchers are basing their initial concerns on a dozen years' worth of disease data collected by Lesley Pacey and Anna Calhoun, two Eastern Shore mothers whose families were touched by rare conditions. Calhoun has since moved with her family to Nebraska.

Pacey's daughter was afflicted with leukemia at age 4, while the child's great-grandmother suffers from ALS. Pacey said she began trying to keep track of the illnesses when two other children in her daughter's play group also developed rare, life-threatening conditions, including leukemia and neuroblastoma. Like many of those afflicted, both Pacey's daughter and her great-grandmother have lived on the Eastern Shore their entire lives.


According to federal statistics, Baldwin County as a whole has a cancer rate slightly below the national average. Federal records are available only on a county-by-county basis, so it is not possible to compare disease rates among towns.

"Why is it just this little strip along this particular coast? Why doesn't it extend further inland?" wondered Shambaugh-Miller, who noted that the incidence of cancers seems to ease off both to the north of Fairhope and to the east.

Mark Witten and a group of researchers from the University of Arizona will be analyzing trees in Fairhope as part of the cancer study. So far, an initial investigation found elevated levels of chromium, zinc, and mercury in the leaves of some trees in the town, Witten said. A more thorough study will analyze core samples from living trees.

"The beauty of our tree coring is we can actually go back in time and try to develop an environmental history of an afflicted area," Witten said.

Witten then uses pollution data from the trees to set up exposure experiments for mice in his laboratory. He has used the technique in Nevada, Connecticut, Kansas, California and New York, particularly in places believed to have abnormally high leukemia rates. In most of those cases, abnormally high levels of tungsten have been discovered in the tree core samples, Witten said.

Fairhope, in decades past, has been home to various industries and a lot of farming. The region's abundant rain and permeable aquifers raise questions about the groundwater most people in Baldwin County drink, said the scientists. They were also curious about Mobile County's long run as one of the most polluting counties in the nation. Mobile no longer ranks among the top 10 most-polluting counties nationally, as many industries have shut down since the mid-1990s.

"I just think you shouldn't have three kids with cancer in your child's play group," Pacey said, about her daughter's playmates. "Then in her first-grade class there was another kid with cancer. Then I go to Jazzercise and there are two moms with kids who have cancer. We have people in the family with ALS, and people at church with ALS. It just doesn't seem right."

We do not know from where our environmental issues stem. But we do know that our neighboring Mobile County in 2000 ranked eighth in the nation for total toxic releases into the air, especially neurotoxins and developmental toxicants that cause birth defects and cancers, according to EPA’s Toxic Release Inventory (TRI). Also, Mobile County in 2001 was ranked the worst county in the nation in the release of air pollutants linked to birth defects, according to TRI.


The Eastern Shore is listed as the 8th largest disease cluster in the United States. With all of the strange neurological diseases, rare cancers, blood diseses and so forth in our area it just makes me wonder is there any truth  to be found in all of this? I know for me personally I do not remember, growing up, knowing or being aware of this many people who have been or are currently effected by so many rare diseases. I could list at least 10 people off the top of my head, myself included, who is dealing with a "unexplainable" condition that has no rhyme or reason to it.
So I ask is this truth or just speculation???
Most of the information above was taken from www.EasternCommunityHealthPartners.com

Changes to come........

Well things have been insanely crazy around here so I have not had a chance to post in a few days. Honestly, I do not know how all of you raising children, working full time and running a household have time to also blog daily. I'm lucky if I can remember to take something out for dinner each day much less write a blog insert!!
But anyway.......
So last week was really busy for me. I worked 12 straight days without a day off. I was just returning from being out after having the cisteriogram then had to work home builder show all weekend and then finished my 12 day stretch with a very busy week at work. See I was trying to tie up all my loose ends, make sure all clients and builders were happy and content because today I leave for MEXICO for 6 days!!!! I am so excited just to get away and relax with my family (my parents, sister, brother in law and niece), kids and most importantly my husband, since he has been gone for 3 weeks. Man.. have I missed him!!:)
But what I really want to share with you is my visit to my neurologist last week.
I really like Dr. S, he is great!! A little weird and his one front tooth moves up and down, in and out of his mouth making it hard to focus on what he is saying, but he is great!!! So this is my first visit to him since the whole needle jabbing ordeal a few weeks ago. He starts by asking how things went and I give him and quick, but necessary run down. Then he begins his neurological exam. I explain to him that my right arm has been acting a little funny. Not the kind of funny that it's standing up telling jokes funny, but the kind of funny that when i try to pick something up my hand suddenly goes numb and I tend to drop whatever it was I was holding (usually on my foot - which my foot DOES not think is funny!!). I also can not fully extend my arm because when I do I get a awful shooting pain into the right side of my head and through my neck.
So his diagnosis: "Severe nerve damage in brain has caused it to radiate down into my right side limbs", this means that eventually I will loose complete feeling in my right arms and eventually my right leg. He also noticed that I have some "droopage" in the right side of my face. Furthermore supporting his nerve damage theory. So what to do for now: limit the use of my right arm. Personally I do not see how this is possible as I am right handed, drive a stick shift with my right arm and virtually everything else I do is done with this particular limb. What can I say it's a habit. Well that or a God given trait!
He also decided to go ahead and put me back on 250 mg of diamox 2x daily along with potassium supplements so that my hands, feet and face to not completely go numb due to this medication sucking all of the potassium out of my already damaged body. Well if you know anything about diamox, it acts as a lasic which means I spend more time going potty than anyone thought was humanly possible. I have been on this medication before so I already knew what to expect, which is nice.
Whats not so nice is this is most likely only a temporary fix. My team of physicians (yes team - when you are me you have the privilege of getting an entire team assigned to you!! whoop whoop!!) are giving one final attempt at the medication route before they opt for a Ventricular shunt (the fluid will be drained from the brain into the peritoneal cavity or belly or into a chamber in the heart from the brain). Since, as many of you might of guessed, I am not thrilled about the idea of them inserting a large draining tube throughout my body, so for now I will take the medication and pray to God that this time it will work alot better so I do not have to endure the 8 hour surgery.
But honestly, all joking aside... I fully put my trust in the Lord and know that what is His will , will be done!! I may eventually not have the use of my right arm, my face may look a little distorted and hey I may even get a large drainage tube with access sight that looks like Frankenstein, but I will never loose my faith. I know there is a reason that God has chosen me to endure this. I have complete and utmost faith that He has put me in the situation for a reason. He has a plan!! and I am OK with that, I am OK with knowing that what I go through each and every day has a reason and a purpose and when the time is right He will reveal to me what that is.
God is so good even on our worst days. He never gives up on us, never abandons us and never leaves us to figure things out all alone. He has been and will continue to walk beside me and guide me on this journey, as long as I put my trust in Him.

" The Lord gives His people strength. The Lord blesses them with peace" Psalm 29:11

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!!

What a Day!!!

So today was my first day back at work in almost (2) weeks, well since the whole needle jabbing incident, and let me tell you it was quite the day. I awake to the normal scene from The Exorcism, rush to shower, get dressed, pack lunches, iron clothes, get children dressed, throw dinner in crock pot, drop girls at school and race to be at work 20 min away - all by 7:30.
Whew.... I made it and only 3 minutes late!
I arrive to a desk full of sticky notes, folders with notes, phone calls to return and lots of e-mails to sort through. Not to mention, this weekend I am setting up for and working a home builder show and I still had so much to do to get ready.
It's OK, deep breaths, I can do this.  I try to ignore my agonizing pounding head and focus on work. My greatest and best distraction from real "life". Each day I try to arrive and leave all of my "baggage" at the front door and pick it back up on my way out, but it does not always work out that way.
By lunch time, I was already thinking this had to be the longest day EVER! I had already returned several calls, filtered through my long list of e-mails, sent out a few quotes, lined up help for this weekend, reserved a truck, placed a few orders, researched and found some very expensive mosaics for a decorator friend of mine and was threatened by a customer. (Well technically she told me she was "holy" and if we did not install her carpet tomorrow she would come down here and spank me - in a "holy" manner. Is that possible???)
As you can probably imagine by now my bruised and aching back was killing me and my head was not just pounding, there was little man stuck somewhere in there running a jackhammer at full throttle and he was not letting up.
That's when the real fun began!
I got a call from the preschool of my little one. "A" woke up from nap burning up with a fever and she needed picked up. Are you kidding me? God- Really?
Don't get me wrong, it pains me more than anything to see my children sick. They are so pitiful and I feel so helpless. But today? It not even the end of January and I have almost already used up a full years worth of sick and vacation time. My boss is going to kill me!!! (Actually my boss is a terrific man who is very supportive and compassionate to my circumstances.)
The good news is, someone else may be getting the spanking tomorrow because chances are I won't be there.
So off I go, rushing out the door to get my sick baby. Man was I right, she looks pitiful. I wrap her in my arms, kiss her sweet little head and put her in the car. This is where she informs me that she can not touch ANYTHING, so I will need to get her what ever she may need or want, because she will get everyone else sick. I am guessing this is her interpretation of something one of her teachers may have told her. Either way, I was ready and willing to get that pathetic looking sweet face whatever she needed.
Since her pediatrician could not see her today I decided to take her to the local walk-in clinic. But first, since I was not sure how long it might take, I needed to run home and grab "K" who was about to be getting out of school.
So by 4:30, we are now sitting at the pharmacy waiting for prescriptions, grabbing some Motrin (since I can not remember how much we have at home) and stocking up on pedialite.
By 7:30 baths and supper are done, the little one has her medicine and is tucked tightly in bed, for the moment.
It's funny how regardless of how I feel or what's going on with me, if one of my girls needs me everything else becomes irrelevant as I go into Gestapo mode to make sure they are taken care of, often neglecting my own needs.
As I sit here typing, replaying today over I realize that ultimately today, as with any day, was God's will. He is in control and maybe this was His way of showing me, I am not superwomen. I can not do it all and I definitely need to full heartily put my trust in Him. Not just when it's convenient for me but all of the time.
So lesson for today: I will let God continue to be my Pilot and I will put my trust in Him knowing that He will not leave me searching for the auto-pilot switch!

Repost: Prayer Request

I have decided that I am going to share a prayer request post I put on Facebook about a year ago. I posted this after speaking with the terrified mother of a 13 year old boy who was about to undergo a very lengthy brain surgery. I know some of you have already read this once, but I wanted to re-post it as a reminder of the need for continual prayers for this family. I coincidentally found out later that he made it through the surgery and as of a few months ago was doing great. However, he's future is unknown as the type of cyst / tumor we have has a tendency to return at a moments notice and complications can last a lifetime.
Thank you to all of you who lifted "Austin" and his family up in prayer!!

I have not been able to sleep the last few nights, because their is something that is weighing very heavily on my heart.
As most of you already know, I have had to have two brain surgery's in the last seven years. As a result of this, I am listed as a resource, for those who have the same type of tumor I had, with the National Brain Tumor Society and the Neurosurgeon's office, who preformed my last surgery, in 2007.
I received a call from a mother in distress on Thursday night. Her 13 year old son, Austin, has a Arachnoid Tumor, 6cm in size, located on his brain stem. The size and location of the tumor is causing paralysis of the right size of his face, twitching, deafness in his right ear, severe headaches, mood swings, blurred vision, speech complications and much more. He has had to deal with these side effects for almost a year, as there is not a Neurosurgeon who will preform such a tedious, time consuming and life threatening surgery until he is 14 years old. He turns 14 on Monday, August 3rd, and will have the 14-16 hour surgery on Tuesday, August 4th. They will have to remain away from their home for almost 13 weeks, due to post-op testing and follow up visits.
As I spoke with this mother, in length, Thursday evening, I could not help but feel her pain. As a mother myself, knowing the pain, fear and anxiety I felt as I faced my own surgery, I could not imagine having to watch one of my children go thru the same thing.
I gave her the basic run down of what to expect, as I do all those who call me looking for advice, asking questions or just in need of a listening ear.
However, she was different than all of the others, she was the MOTHER OF A CHILD who was facing the unknown. She had no idea of the physical pain he is feeling, she is just hurting for her baby.
She told me I was the third "resource" she had spoken with this week and by far my recovery time and outlook on life was definitely the most encouraging. I responded with the fact that I did not "get here" all alone, I had the support and prayers of a lot of people along the way, but most importantly I have my FAITH. Yes, some days are more difficult and painful to face than others, but if you do it with a smile on your face and God by your side, it makes those "days" more bearable.
I advised her to always asses Austin's feelings and get his input on the so called "advice" she would receive from the doctors, in the years to come. While this type of tumor/cyst is listed on the National Organization of Rare Disorder list (NORD), do not let that dictate how he will continue to live his life. Too many times I have been told to quit my job and collect disability, by these "doctors" because I am " in fact eligible". While I may be "eligible" and so may Austin, in years to come, this is not the way I want to live my life and I am sure it's not the expectations of this child's future either.
I told her to follow the doctor's post-op orders to a T (unfortunately I learned this one the hard way), don't rush the healing process (again learned the hard way), what she could expect after surgery and other bits of advice that I had to offer from my own experience. But the two most important things I could tell her were:
1) He is going to need you now more than he has ever needed anyone in his whole life. Austin will need to lean on you for support and will rely on you for all of the things he will not be able to do himself. Then I apologized , in advance, for all of the ugly things he may say to her. I tell you this, because I can not tell you how many times I had (have) to apologize to my husband for being "ugly", when he was just trying to help. "I know you are helping me wash, blow dry and straighten my hair - but you are doing it all wrong!" Boy was I ugly!
2) I reminded her of God's undying love for her and her son. That no matter how alone she felt right now, HE is right there with her with HIS loving arms are wrapped so tightly around them both. I also assured her that what is happening to them is not anyone's fault and as much as we always want someone to blame when things start to get bad, there isn't anyone.

I ended the conversation by telling her that I would be in prayer for them and to please keep me posted on the outcome of his procedure. When we hung up the phone all I could do is cry and think of the emotions this lady (who I never got her name thru all of the tears) and her son must be going through. My heart just ached for them.
So, as I layed in bed the last couple of nights thinking of a way that I might be able to help them. I had to reflect on what was the most helpful to me and my family, what did we benefit the most from? Yes, while  the cards, phone calls, e-mails, visits, meals, etc ..were all extremely heartfelt and encouraging, it was the PRAYERS that pulled me through.

Therefore, I am sending this to you and asking - please weather you know me or never met me, like me or despise me - please take a moment to say a prayer for Austin, his family and the doctors and nurses that will be caring for him.

Prayer is such a powerful tool and when we all unite in our prayers to the Lord, this is where miracle's are born.

Thank you and God Bless,
Jessica Smith
"Continue to strengthen me, Lord and use my life each day, to share your love with others and help them find their way."