Zipperheads uk: Awareness in the Media

Tuesday 27 October 2009

Awareness in the Media

Just to let you know that i have had some correspondence back from Atos Health care, these are the people responsible for the Medical assessments on behalf of the Department for Works and Pensions (DWP).They are basically saying that their Doctors have vast knowledge of Chiari Malformation and Syringomyelia and that my letter of complaint that the doctor assessed me incorrectly was untrue and so the appeal continues.
I have today contacted my MP yet again to let him know that i had received a letter from Atos and he is going to send a letter of complaint to them also. I have contacted Job centre Plus who say i may have to go through the medical assessment for the third time. I have also today contacted the Local press and ITV's This Morning to cover my story. Please can anyone interested in raising any topics let me know so i can bring them up in the story . I will let you all know how it goes in due course.

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Welcome

Hello and welcome to Zipperheads Chiari Blog. I have started this blog in order to help sufferers and their families and to raise awareness regards to this disorder and associated disorders. Like myself i felt alone and thought no one else could understand what i was going through. People seemed to think i was a hypocondriac . There was only my Parents who i could turn to as my Mother had Chiari in her early fourties over twenty years ago and underwent Decompression. I had difficulty getting my GP to help me as he believed i was suffering from depression and even after visiting numerous doctors , specialists and Neurologists they could not diagnose me. It was myself who finally found the problem after studying my MRI's and notes. It was also after joining another Blog that i truly found help and inspiration through others who have and still are suffering. No one truly knows and understands like a fellow sufferer. It is through total ignorance by others that there is no recognition to our problems. So please with help from you we can all help raise more awareness . Please feel free to sign up as a member.

What is Chiari Malformation

The Chiari malformation is an abnormality in the lower part of the brain called the cerebellum. There are several different forms. The most common type is the Chiari I malformation (CM) which this article addresses. Less commonly, it may be known as Arnold-Chiari malformation, tonsillar herniation or tonsillar ectopia. Most cases of Chiari are congenital, meaning they are present from birth.

In normal anatomy, the cerebellar tonsils are located just above this line called the foramen magnum. But in an individual with Chiari, the tonsils hang below the line (herniate) into the spinal canal. The degree to which the tonsils extend can vary tremendously.
What are the symptoms?

The most common symptom of Chiari malformation is a headache, which begins at the back of the head (neck) and radiates upward. The pain is often made worse or can be brought on by coughing, sneezing or straining. These activities are known as valsalva maneuvers.

Visual problems such as nystagmus (involuntary eye movements), double or blurred vision may occur. Balance difficulties, vertigo and dizziness also may be present. Some people may have cranial nerve compression. This can result in apnea (cessation of breathing), gagging, swallowing difficulties, facial numbness or syncope (temporary loss of consciousness).

Patients may have muscle weakness, particularly in the upper extremities, coordination problems, and gait abnormalities. Imaging of the spine may reveal a fluid collection inside of the spinal cord, known as a syrinx. Some individuals may have hydrocephalus, a buildup of fluid in the ventricles of the brain.

What is Syringomyelia

Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. The condition occurs when cerebrospinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx.

This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

There are two major types of SM. In most cases it is related to a congenital malformation involving the hindbrain (cerebellum) called a Chiari I Malformation. This malformation occurs during fetal development and is characterized by downward displacement of the lower part of the brain (cerebellar tonsils) beneath the foramen magnum, into the cervical spinal canal. This displacement blocks the normal flow of cerebrospinal fluid. When normal flow is obstructed, a syrinx can form in the spinal cord. Not all patients with Chiari Malformations will develop a syrinx, however.

SM can also occur as a complication of trauma, meningitis, tumor, arachnoiditis, or a tethered spinal cord. In these cases the syrinx forms in the section of the spinal cord damaged by these conditions. As more people are surviving spinal cord injuries, more cases of post-traumatic SM are being diagnosed as the syrinx can form years after the trauma.

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Tuesday 27 October 2009

Awareness in the Media

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