Jennifer Karen Corkrey O'Hara
Support Center - "I can't, We Can"
Jenn's Blog   <--- Click!!

Intracranial Hypertension                    GIVE A GIFT
IHRF

This page contains IH disease news.  We'll also describe IH's effects on Jenn and new things we've learned about the disease.

Jenn after her 11th surgery Dec. 6th, 2007
              --------------------------------------------------
From Ron Corkrey, Jenn's Dad.

Along with the physical pain and disability from the disease, Jennifer suffers from the mental pain of losing her job and being unable to function well enough to obtain new employment.  Medical costs and living expenses only add to the burden.  She has used up her California disability benefits and was recently rejected by the Social Security Administration for permanent disability benefits.

  • The Intracranial Hypertension Research Foundation E-Newsletter


    March 2008


    Feature
    Is My Doctor the Right One For Me?
    5 important questions that can help you decide
    image
    What is essential for a good patient-doctor relationship? When is it time to re-evaluate your own relationship with a doctor?  Jerome Groopman M.D.'s book, "How Doctors Think" provides the basis for five important questions that can help you determine whether your doctor is a good fit. 
    Read Feature



    GIVE A GIFT


    Q & A

    Q: How do I know if my opening pressure on a spinal tap is accurate?

    A: To obtain an accurate opening pressure, the spinal tap must follow a certain standard procedure. Before the tap begins, you must be lying on one side with your knees slightly bent forward, a position known as lateral de cubitus. If you are in any other position, the pressure reading may not be correct. You also have to be relaxed, which means you can't hold your breath or bear down (Valsalva maneuver), because these actions can falsely elevate an opening pressure. The physician performing the tap may have you extend your legs after the needle has been inserted.

    The opening pressure is simply the highest point that the cerebrospinal fluid reaches in the manometer tube. No spinal fluid should be removed until the opening pressure has been recorded. Additionally, the cerebrospinal fluid sample must not have any blood in it.

    Position is one of several factors that can influence the accuracy of an opening pressure. If you are seated during the tap, for instance, the opening pressure may read higher than it actually is.

    At the same time, other factors can cause an opening pressure to appear lower than it might truly be. These include the use of Diamox and possibly other drugs, as well as VP shunts. A recent tap can affect the accuracy of the opening pressure of a second tap, if done shortly after the first, because sometimes a small spinal fluid leak can develop and temporarily lower pressure. Additionally, if two spinal taps are performed close together, the spinal fluid may not have had enough time to regenerate to its hypertensive state.

    Spinal fluid pressure also fluctuates, rather than remaining at one static level. Research has shown that both blood and intraocular (within the eye) pressure fluctuates with the time of the day, which is known as diurnal variation. Is this true of spinal fluid, as well? If so, it could be another factor to be considered when reading an opening pressure.

  • Jennifer's IC Pressure was 3x Normal !

    Jan. 15, 2008       GIVE A GIFT

    FYI:  Jennifer's intracranial pressure last measured before her 11th surgery was over 310mmH2O.  A normal brain's intracranial pressure is approximately 100mmH2O.

    What is IH?

    Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” To understand how this happens, it’s helpful to look at the basic anatomy of the brain and skull, as well as the process in which cerebrospinal fluid is created and absorbed.

    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.) 

     GIVE A GIFT

  • What does it look like inside the head?

    December 28, 2007

    Schematic Drawing of Cerebrospinal Fluid Circulation.
    Elevated CSF pressure is transmitted around the brain and along the optic nerve (sub-arachnoid space) producing papilledema.

    Cerebrospinal fluid flows from the choroid plexus through the brain’s four, interconnecting ventricles before finally entering the sub-arachnoid space, which surrounds the brain and spinal cord. The fluid then flows over the brain and spinal cord and is eventually absorbed into the venous blood system through tiny, one-way channels called arachnoid granulations or villi. 

    When this continuous cycle of CSF production, circulation and absorption functions normally, it regulates the volume of CSF in the skull and the fluid pressure remains at a constant level. In other words, the CSF production rate remains equal to the CSF absorption rate. 

    But when the body cannot effectively absorb or drain CSF, intracranial pressure increases within the fixed space of the skull. And since the brain and the vasculature can only be compressed so far, intracranial pressure must rise. Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above. 

    Schematic Drawing of Cerebrospinal Fluid Circulation.
    Elevated CSF pressure is transmitted around the brain and along the optic nerve (sub-arachnoid space) producing papilledema.

    Cerebrospinal fluid flows from the choroid plexus through the brain’s four, interconnecting ventricles before finally entering the sub-arachnoid space, which surrounds the brain and spinal cord. The fluid then flows over the brain and spinal cord and is eventually absorbed into the venous blood system through tiny, one-way channels called arachnoid granulations or villi. 

    When this continuous cycle of CSF production, circulation and absorption functions normally, it regulates the volume of CSF in the skull and the fluid pressure remains at a constant level. In other words, the CSF production rate remains equal to the CSF absorption rate. 

    But when the body cannot effectively absorb or drain CSF, intracranial pressure increases within the fixed space of the skull. And since the brain and the vasculature can only be compressed so far, intracranial pressure must rise. Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above.

Benign Intracranial Hypertension

 

Here's another website with some great information:

CLICK ON THE LINK: 

http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnw 

Benign Intracranial Hypertension is also called just Intracranial Hypertension.

What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain. The disorder is most common in women between the ages of 20 and 50. Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating intracranial noises, closely mimic symptoms of brain tumors.

Is there any treatment?

Some treatable diseases can cause raised intracranial pressure and symptoms of pseudotumor cerebri. A thorough physical examination is needed to rule out these disorders. If a diagnosis of pseudotumor cerebri is confirmed, hyperosmotic drugs may be used to reduce fluid buildup. Diuretics are commonly used to relieve pressure. Weight loss and cessation of certain drugs (including oral contraceptives and a variety of steroids) will lead to improvement. Therapeutic shunting, which involves surgically inserting a draining tube from the spinal fluid space in the lower spine into the abdominal cavity, may be needed to remove excess fluid and relieve pressure. Close, repeated ophthalmologic exams are required to monitor any changes in vision. Surgery may be needed to remove pressure on the optic nerve.

What is the prognosis?
The disorder may cause progressive, permanent visual loss in some patients. In some cases, pseudotumor cerebri recurs.

What research is being done?
The NINDS conducts and supports research on disorders of the brain and nervous system, including pseudotumor cerebri. This research focuses primarily on increasing scientific understanding of these disorders and finding ways to prevent, treat, and cure them.

Organizations
Intracranial Hypertension Research Foundation
6517 Buena Vista Drive
Vancouver, WA   98661
contact@ihrfoundation.org
http://www.IHRFoundation.org
Tel: 360-693-4473
Fax: 360-694-7062

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
 
Pseudotumor Cerebri Support Network
8247 Riverside Drive
Powell, OH   43065
ptcduncan@juno.com
http://www.pseudotumorcerebri.com

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892 


GIVE A GIFT

THIS COMES FROM AN EMAIL WITH AN OPEN APPEAL FROM THE IHRF

Why  Does Chronic Intracranial Hypertension (IH) Happen?
Why does it only affect some people and not others? Is IH genetic? What's the relationship between weight and intracranial hypertension? Are there medications I should avoid? Am I at a higher risk for other diseases or disorders? Will I lose my eyesight? Are there better treatments for intracranial hypertension? Why doesn't my doctor understand what's happening to me? When will I get better? Can they find a cure?

If you've ever asked yourself these questions, then you know how difficult it is to struggle with intracranial hypertension. The answers can be found, with your help. The key is medical research, which is why the IH Registry was established. It is the first and only medical registry of its kind in the world today.


Why Your Participation Matters
A medical registry is a collection of medical data for a specific disease or disorder. Researchers use the information to study patients, learn about the disease/disorder and develop better treatment options. It is a vital tool in the search for a cure.

Each person is important in the IH Registry because every medical history is unique and adds to our knowledge of intracranial hypertension.


Who Is Eligible
Any person with chronic intracranial hypertension documented by a physician is eligible to join the IH Registry. This includes people with idiopathic intracranial hypertension of unknown origin (also known as pseudotumor cerebri or benign intracranial hypertension), as well as those with secondary intracranial hypertension due to an underlying medical condition or trigger. IH patients of any age, body type, gender or nationality are eligible to enroll.

There is no cost to enroll in the IH Registry. The IH Registry is a joint project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University and fully complies with federal HIPAA privacy regulations.


Benefits to Enrolling
*Participate in the search for better treatments and a cure, including clinical trials
*Demonstrate that IH affects a significant number of individuals
*Expand knowledge about IH


To Enroll
To learn more about the IH Registry and receive an enrollment packet, you can contact the Registry directly through our website <http://www.ihrfoundation.org/intracranial/hypertension/info/C36>. You may also call the IH Registry office at 503.418.2141. Thank you for your interest and participation!

** Note: If you are already enrolled in the Registry, please accept our apologies for this email and THANK YOU!

The Intracranial Hypertension Research Foundation

 

www.JennOHara.com and www.Corkrey.com 2006-2009. All rights reserved.

(All American Idol copyrights are the rights of American Idol.)

 All photos are copyright of the photographers as noted.


 GIVE A GIFT