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

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.

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!!

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!!

Victim of Circumstances?

Today has been quite an uneventful day. I have not done alot except snuggle with my sweet "A" watch cartoons and try to mentally and physically prepare for the weekend and the week to come. Somehow this is my coping mechanism and the OCD part of me tends to do better if I "prepare" myself for what's coming.
I awoke, as usual, this morning bright and early only to spend 30+ minutes in the bathroom throwing up. This is the first morning I have awoke this way in several days. However, it is usually the norm for me. I have even learned to get up a little earlier the mornings that I have to be at work or church in order to get it over, so I can proceed with my "normal" morning routines.
I have learned that with increased intercranial pressure and a cyst on my pituitary the transition from lying flat to sitting up causes an adverse effect with the rest of my body. If you were a fly on the wall you would find most mornings at my house are quite comical. The alarm goes off, I roll over off my back to my knees on the floor and crawl the rest of the way to the bathroom. If I make it before getting sick I consider it a great start. However, if the alternative happens, well you can guess how the rest of the day proceeds and I am sure my husband and I will never quite grow used to the smell. Every outlet in my house has a plug in. I believe that the Smith family probably single handily funds over 90% of Febreeze's profits!
At one point my soon to be 13 year old swore I was pregnant and trying to hide it from my husband! After much debate and pinky promising I think she now is finally convinced I am NOT with child. It's not that I do not LOVE children, I do. I just never, ever want to put myself or my unborn child through the misery of a pregnancy full of unknowns. Will I have a seizure during delivery? Will the child be born with a cyst on their brain? Will the umpteen thousand prescriptions I have to take every day effect my unborn child?
While I would never trade my two precious girls for anything in the world, you can understand why being pregnant would not be beneficial to anyone.
Sorry getting off track here....
So after cleaning up, scrubbing my teeth (yes - scrubbing) and changing shirts, finally I got to enjoy my favorite part of the morning. A hot cup of coffee in peace and quite! Ahhhh... I love the serenity of sitting with a hot cup of coffee, 5:00 news playing in the background and my daily devotional in hand. Something about the peacefulness of sitting with God's word and giving Him many thanks and praise for all of the blessings He has given my family.
My devotional this morning talked about anger and God's forgiveness. (Ephesians 4: 31-32) It's easy to be angry. It's easy to play the blame game. After all when life is throwing all types of trials and tribulations our way we often blame God for what we are going through. We point the finger and become angry for "Him letting this happen". But is it really His fault? Is it really anyones fault? God does not wish his children to suffer. He loves us. When we laugh He laughs and when we weep He weeps right along beside us.
It's funny because my dad and I were just talking about this very thing the other day. He said "I don't understand why He just does not take your pain away, you know he can. Why did He choose you to endure all of this?" My only response to my dad was this - "God is obviously using me and my illness to help others. One day everything I have been through will have a meaning and it will make sense. If only one persons life is changed or if one mother's nerves are set as ease because she was given my number  - then to me every bit of pain is worth it." He replied "I know but I hate seeing you like this and I hate that I can not do anything to fix it. I would rather suffer than to see you." (For those of you that do not know I am listed as a resource for the National Brain Tumor Society and through my last Neurosurgeons office so that anyone who is facing the same or similar issues as myself can call me. We may talk about what to expect, the procedures, the surgery, how it has effected my life, etc... But most of all I find myself just listening and always offering a prayer, most of the time that's all they need is someone who's been through the same thing to listen. It has also been a awesome tool for me to remind them of God's undying love for them.) I had to then tell my dad that "God knows that there is NO WAY a man could go through what I go through, I mean I love you and all but we know that most all men are big babies when their sick and you are no different." His simple reply - "Your right!"
Trust me I am no saint! I hurt all the time and I get angry and upset just like everyone else. I have both good and bad days. I get upset with others and  curse words have even been heard leaving this mouth. (Just ask the cheif resident at the hospital last week, I am sure he could give you an earfull of the nice inappropriate language I was using) But all I can do is try. I know I am a sinner. I know I am not perfect and often I feel as if I am not worthy of the sacrifices has God made for me. But guess what - we all are! We are all human and from time to time us humans make mistakes. Its recognizing the mistakes and growing because of them.
So for today, I will take this throbbing head of mine and recognize that even though I live in a world that is surrounded by anger and hate I will choose not to become a victim of circumstances. Instead I will remember God's unending forgiveness for me and I will try to treat others with the kindness and compassion that God continues to show to me each and every day!!