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.