Can You Work

If you receive Employment and Support Allowance you will have a Work Capability Assessment to find out if you are able to work.

ESA EXPLAINED

Employment and support allowance (ESA) was introduced in late 2008 for people who have a health condition or disability that limits their ability to work. ESA replaces Incapacity Benefit (IB) or Incapacity related Income Support (IS) for adults making new claims in the UK. Almost everyone who claims ESA will attend a work Capability Assessment (WCA) to determine their level of benefit and any support they need to start work. Over the next few years, WCA’s will also become compulsory for people on IB or IS. Knowing what to expect can help you prepare and feel more confident. read more click on Support forum under General Support

Useless

I miss being the father that i should be. I have to turn my son away sometimes as he often asks me to pick him up, carry him on my shoulders, run along with him. I am tired of giving him excuses like, "daddy cant do that" but why not daddy, " i am not well enough, or daddy has got a poorly head", to which the reply is Oh. Just looking at his little face breaks my heart as he is clearly thinking, but why not daddy. I even have to watch him cry his eyes out because i cant play with him like i should.
My wife takes him round to his nans house and he loves to play which i am grateful for but he thinks i can do the same at home. Its not just the physical element, its also the mental side of it. My wife does not like leaving me alone with him just in case i have a funny turn. I often forget to do certain things and she feels i am not capable of looking after him.
I also feel great sadness when he is invited to certain outings like the other day he was asked to go to the Monkey sanctuary with my wife's family, I could not go due to there being a lot of walking and looking up involved. Just the other day he was invited to his little friends birthday party at the snow dome. All the children had two hours on the snow play, where they could go on the sledges and play in the snow. All the mothers and fathers were there and all were very excited as were the children to get onto the snow. I just stood there and felt broken hearted as my son was led away with all the other parents to play on the snow. he just looked at me as to say, why aren,t you coming daddy. I had to sit in the cafe looking out the observation windows at him playing and he kept looking up at me with those sad eyes. I feel terrible . The last time we went running down the road together was last year pre op and that's when i collapsed in the road. I so wish i was my old self. I feel awful most of the time as i know my wife's family think i am just being lazy. Just today i dropped my wife and son at her mothers and her mother asked why i was not going out with them. My wife explained that we had gone shopping yesterday and that it took too much out of my and i was not feeling very well. I caught the look of my mothering law out of my peripheral vision, rolling her eyes and shaking her head in disapproval. I feel worthless as both a father and as a husband for not being able to do the things i should be able to do with my son and because of the things i forget to do when asked and for not finishing things i should have done by my wife. I sleep on the sofa for which i have done for the last two or more years because of my snoring and sleep apnea which keeps everyone awake. I have sexual problems because of my Syringomyelia so that makes my wife unhappy as she wants another child before she is too old. My wife is constantly shouting at me because of things i forget to do or because i cant do them and because i am not working and we are close to bankruptcy because of this wretched disorder. I keep thinking that maybe my son and my wife would be better off without me, and my wife has suggested me move out but because of financial difficulty i cant even do that.
I bet there are many other sufferers out there who are going through the same thing.

New amazing weight loss drug, or so it seems

I am writing this in regards to a new drug called Acaiburn. Its not what you think.
Since decompression surgery, i have put on a lot of weight due to not being as active as i once was. I was told by my Neurosurgeon to try and loose weight as this may ease some of my discomfort. I made an appointment with my GP and told him that i needed help with losing weight. He told me that i needed to loose a few pounds and he would put me on a drug that would help me shed those pounds. I did what he said and lost a few pounds. I went back to see him and he said he would not put me on the drug like he said he would. He took my blood pressure and told me it was very high and prescribed me with blood pressure tablets and to go back and see him after two weeks. Today will be two weeks and i am due to see him later today.
I had stopped smoking for twelve months prior to decompression and have now started again due to stress in my relationship and to also try and suppress my appetite ( i know this is not the answer, but i needed to try something).
I was now desperate so i googled for a weight loss program. I found a new break through in weight loss, or so i thought. It was a website entitled " how i lost 5 stone 4 pounds in under 15 weeks. It is a story of a woman who combined a new wonder drug called Acaiburn and a drug called colon cleanse. The weight had dropped of her in weeks. It sates that she had found a way of ordering a two weeks course of both drugs for free. It gave a link with a code to enter in order for you to get these free trials. I went along with this and ordered my free trials of both drugs. I had to pay postage and packing which only cost me $9.00. I received the drugs within two weeks and started the course in the way she explained.
I received a bank statement yesterday and found that £74.00 had been taken from my account by a overseas company. I rang the bank immediately and asked what this was. The lady from the bank told me that there was another amount of £54.00 taken from the account that day from the same company and another £54.00 the day before. This is a scam where there is a hidden subscription that is not mentioned. The lady from the bank said that the company is known to their fraud department and that more monies will likely be taken. I now have to wait for a declaration to be sent to me so i can sign it before the money can be refunded back into my account. Meantime this will keep happening. I now face bank charges as this has brought me over my overdraft limit. I am out of work due to this disorder, i am close to bankruptcy and face loosing my home. I have been hanging on by the skin of my teeth and this has happened.

PLEASE BE AWARE OF THIS SCAM, IF YOU ARE DESPERATE TO LOOSE WEIGHT.

The web address to avoid is http://loseweight-quickly.co.uk/amysdiet.php.

Don't Be fooled.

Restless Legs or Myoclonic Seizures

I had been suffering with what i thought was restless leg syndrome, (even though i had not been diagnosed with it). It started approximately three years ago, about the same time as i was starting to have symptoms of Chiari,( this was not diagnosed until three years later). It really gave me problems in the evening when i Had settled down in front of the telly for the night. It would feel as though there was a energy building up in the base of my spine and all of a sudden would shoot down my legs, causing a spasm. You could see it in my feet as they would go left and right at a great speed. People who saw it would laugh as it looked so strange. I read up on Restless leg Syndrome after seeing a leaflet in my Doctors surgery, so i just put it down to that. In April this year, straight after decompression surgery, I was lying in the hospital bed and started to get these jerks in not only my legs but now in my arms, legs and head. Again it is when i am at rest. When I am up and about during the day i can feel the sensation in my spine, my arms tense and my fists clench and move up to my forearms . I sit down and my arms and legs will suddenly shoot about. I try to control it but to no avail.
I went to see my surgeon two months post op and he told me they were called Myoclonic Seizures and prescribed me with Lamotrigine which is a drug used to treat Epilepsy. They help to ease it a bit but does not stop it.
Now after a bit of research i have found that seizures may not always relate to the brain itself, but may be caused from the Brain Stem. An interesting find as this may be the reason so many of us have been getting problems with jerks and we have just been putting it down to restless leg Syndrome.

MYOCLONIC SEIZURES

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time.

RESTLESS LEG SYNDROME

Also known as Wittmaack-Ekbom's syndrome, and colloquially as "the jumpylegs" is a condition that is characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can also affect the arms or torso. Moving the affected body part modulates the sensations, providing temporary relief.

RLS causes a sensation in the legs or arms that can most closely be compared to a burning, itching, or tickling sensation in the muscles. Some controversy surrounds the marketing of drug treatments for RLS. It is a 'spectrum' disease with some people experiencing only a minor annoyance and others experiencing major issues.

New Forum

Hi folks
I have opened a forum with regards to Chiari Malformation and syringomyelia called Chiari care . Please click on the link to enter . Please feel free to chat away and to raise any subject with regards to these conditions.

www.chairicare.com

Chatter Box

I have added a chat facility to the side bar of this blog page in order for questions and answers regarding Chiari and associated disorders. Please feel free and chat away.

Great News

I have just received Great News. A local paper have asked to cover my story in respect of Chiari and Syringomyelia or should i say our story. It will cover myself of course and the problems we are faced with regarding diagnosis and claiming benefits. They will again contact me in several weeks to interview me as they want to cover the full story.
So this is where i ask for your input. Please contact me with anything you would like to add so i can collate it all ready for the release.

Fact sheet

Factsheet Chiari-1 Malformation

Dr's know how to recognize multiple sclerosis (MS) – They probably have
several cases in their practice. They would also expect to add one or two new
cases every year. 85,000 people in the UK have MS. MS is rare,
but not uncommon.

Did you know that similar numbers apply to Chiari-1 Malformation?
Most cases of Chiari are left undiagnosed, or worse, misdiagnosed as multiple sclerosis, migraine,
fibromyalgia, or psychiatric disturbances, a common error that prevents physically ill Chiari patients from getting the kind of help they need and deserve.

Let’s take a closer look.

Chiari-1 Malformation is properly defined as a mesodermal anomaly, a deformity of the posterior cranial fossa boundaries, most notably the occipital bone, but also the tentorium, clivus, basion and opisthion. The deformity subtly compresses the cerebellum and often the occipital lobe, brainstem, and/or spinal cord, too. The cerebellar tonsils herniate into the foramen magnum and may occupy a small portion of the upper cervical spinal canal. They are visible on mid-sagittal and slightly parasagittal MRIs. However, in some cases, the tonsils wrap around the brainstem or curl up like tiny snails; then their appearance is more subtle, but their effect is just as debilitating. The reason for symptom and sign manifestation – and an important key to the severity of a case – is the deformity’s effect on cerebrospinal fluid (CSF) dynamics.
When CSF flow is turbulent, reduced, or absent in one or more locations, adjacent brain tissue
receives little nutritional support, cellular byproduct removal, or cushioning from the effects of
mechanical or Valsalva maneuvers. Brain function in the affected areas is disturbed. Naturally,
patients report debilitating effects that correspond to the malfunction of the affected brain parts.
Symptoms and signs can number into the dozens, can appear to exist in unrelated systems,
can wax and wane as influential factors change.

How can you identify Chiarians?

The easiest way to identify Chiarians is by cataloguing their complaints in categories corresponding to brain anatomy :and to listen for details indicating cerebellar, occipital lobe and brainstem malfunction, then add upper spinal cord symptoms, and the malfunction of midline structures such as the hypothalamus, amygdala, and pituitary gland. You’ll see a pattern that is unique to the patient’s anatomy; it matches the territory of the malformation and reflects defects in the patterns of cerebrospinal fluid flow. MRI scans need to be ordered to verify clinical observations.

An MRI of the brain will show subtle structural defects in addition to any obvious tonsillar herniation.
An MRI of the entire spine will rule out or confirm a syrinx; this fluid-filled cavity often accompanies Chiari and can be found anywhere in the spinal cord. A Ciné MRI of the cranio-cervical junction will outline CSF flow dynamics. Diminished or absent flow needs to be looked for especially in the retrocerebellar spaces, and from the fourth ventricle between the brainstem and cerebellum. Hydrocephalus is not necessary for the diagnosis of Chiari.

Subtle deformities within the posterior fossa need to kept in mind ,with or without frank herniation, can be more problematic in their effect on brain function than a large but simple ectopia that happens to leave room for normal fluid flow. This explains why short, thick cerebellar tonsils that barely plug the foramen magnum can cause a serious impediment, while a longer herniation that is thin or pegshaped sometimes can cause few problems.

Ok, so you realize you have a few Chiarians. Now what?
Take good care of them. Typically they have been suffering for a long time, with no name for their assailant. Chiari needs to be explained to the patients, and to reassure them that they are not psychologically ill, that their compressed brain tissue and altered fluid dynamics do have measurable effects on their physical function. They need to be encouraged to learn more. Then to work as a team to decide which of several courses should be followed.
In cases with mild symptoms, the patient needs to be encouraged to keep the Dr informed of any changes, follow good health habits, and avoid physical activities that promote whiplash, such as trampolines, roller coasters, and contact sports.
In cases with moderate symptoms, also consider trying a biochemical treatment such as Diamox
to reduce fluid production if indicated, or suggest a mechanical treatment such as cervical traction to increase space in the cranio-cervical junction.
In cases with moderate to severe symptoms, the patient needs to be encouraged
to consult with a neurosurgeon who is very experienced with Chiari cases. Surgery for this
debilitating malformation is a delicate art form; it requires a resculpting of the retrocerebellar spaces to create the missing cisterna magna and to redirect cerebrospinal fluid and establish proper flow dynamics in multiple planes.

Two more points to consider:
The patient needs to report immediately any of the red-flag warning signs of severe brainstem
compression: breathing difficulties, swallowing/choking problems, wild heart rate fluctuations, and/or drop attacks. When they call the Dr action needs to be taken. Brainstem compression from Chiari can develop at a variable pace, and it has been known to kill. Familiarize yourself with the subtleties of this rare-but-common disease. Check out the following internet resources for accurate, up-to-date information.
www.thechiariinstitute.com
www.conquerchiari.org
www.asap.org
www.wacma.com
www.chiariblog.co.uk
www.chiari.co.uk
www.zipperheadsuk.blogspot.co.uk

Approximately 85,000 people in the UK acknowledge having MS. Worldwide, MS may affect 2.5 millionindividuals.
Until recent years, CM1 was regarded as a rare condition. With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition. Genetic studies support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected
three times more often than men. Approximately 3,500 Chiari operations are performed each year in the United States.
Estimates for the number of people with true Chiari range as high as 500,000 in the United States. A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population.
Regardless of the degree of tonsillar ectopia, occipital headaches were strongly associated with hindbrain CSF flow abnormalities.
Cerebrospinal fluid flow in foramen magnum: temporal and spatial patterns at MR imaging in volunteers and in patients with Chiari I malformation. CSF flow in symptomatic patients with Chiari I malformation, unlike that in volunteer subjects, is characterized by flow jets, regions with a preponderance of flow in one direction, and synchronous bidirectional flow.
The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology,
patients with CM1 are frequently misdiagnosed.
Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, muscle weakness or balance problems. Often fine motor skills and hand coordination will be affected. Vision problems can also occur. Some patients experience blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights.
Physical examination may reveal nystagmus (involuntary eye movements). Other symptoms include tinnitus (buzzing or ringing in the ear), hearing loss or vocal cord paralysis. Patients may have difficulty swallowing, frequent gagging and choking and, in some cases, sleep apnea may be present.
The most frequent symptom groupings include: headache, pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of voice, frequent respiratory tract infections, coughing when swallowing
foods and fluids, compression of the spinal cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g., arms are effected but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle). Combinations of these syndromes occur commonly.

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.

Treatments

Patients presenting with symptoms from the Chiari malformation often have received a variety of therapies. This can include medications such as analgesics, anti-inflammatories, sedatives, anticonvulsants, antispasmotics, diuretics, and steroids. Evaluation by a neurologist to evaluate for other neurological disorders is important. Physiotherapy may be of help in some patients and evaluation by a chronic pain specialist may be of help in others.
Surgical treatment of the Chiari malformation involves creating more space at the region of the foramen magnum to allow the spinal flow in this area to return toward normal. This is a done by a procedure called a Posterior Fossa decompression. The surgery is performed by creating an incision at the back of the head into the upper part of the neck. The muscles are spread to either side and the occipital bone and the back of the C1 vertebrae are visualized. Skull bone and often the arch of C1 (in some cases C2) are removed. Under the bone is a tough membrane called the dura. The surgeon then opens the dura. Here, the surgical technique varies depending on the practice of the surgeon. Some surgeons open the next layer called the Arachnoid and may shrink the tips of the Tonsils with Electrocautery. Others do not open the arachnoid.
Studies to date do not tell us which is the best procedure as there is no documented negative effect from shrinking the tonsils. The important point is to create more room and thus remove the crowding. Most surgeons will then sew a patch of material into the dura to enlarge the foramen magnum. The wound is then closed with stitches to bring the muscles together and stitches or staples are used to close the skin.
The risks to surgery include leak of spinal fluid through the membrane repair creating a fluid pocket in the muscle (pseudomeningocele), infection, either in the wound or in the spinal fluid (Meningitis), occipital neuralgia, and neurological deficit such as an injury, hemorrhage, or stroke. There are also the risks of any major surgery such as pneumonia, or cardiac problems. Fortunately, for many people the risks are low. Your neurosurgeon will discuss the risks with you.
In deciding whether or not to consider surgical treatment, the person affected by the Chiari I malformation should weigh the quality of their life versus what they understand about the possible benefits and risks. It is important to ask questions until one is comfortable with their understanding of the procedure, the possible benefits, and the associated risks.

So I Say A poem by Dr Oro

Another headache ,The third today, We all have them, So they say

I’m getting dizzy, My vision blurred, Your getting older, Don’t be absurd

I’m staying home, Too tired to go, Go see your doctor , She should know

Too many symptoms, You must be stressed, Take medication, And get some rest

I cannot think well, Can’t find the words, My memory slipping, My speech gets slurred

We’ll get a scan, Since you insist, If we find nothing, Please don’t persist

Don’t make me laugh, Don’t make me cry, It hurts to strain,I don’t know why

Your scan is fine, By report today, Incidental Chiari, So they say

Incidental, What do you mean, By a doctor, I have not seen

It is anxiety, That makes you so, The world is stressful, I think you know

I pulled away, Gave up, or such, Until the pressure, Became too much

I waded through, The Internet, Fearful of loosing,What I had left

It took some time, To come to know, My brain is hanging, Down too low

With every beat, The fluid flows, Deep in the brain, To the opening below

The rush of fluid, Seeking release, Finds cerebellum, Which makes it cease

The pressure spikes, My head explodes, It makes such sense, Now that I know

Working together, We’ll find a way, To make it better, So I say

It Must Be your Car

Trying to get your family to recognise your disorder is the hardest thing i have found since being diagnosed with Chiari and Syringomyelia. I still suffer greatly with constant pain in my whole body.I still get chronic fatigue,problems with speech, vision, Headaches, walking, memory loss, impotence, seizures, electric shocks in my head arms and legs. I sometimes find my self trying to do the simplest of tasks and my brain is not working in conjunction with my hands, like folding a towel, i know what i should be doing but my hands and mind suddenly stop and i am left just staring at the towel thinking " come on you idiot work". I am asked to do some choirs around the house and i either forget most of what i have been asked to do or find i cant do it. My wife will hit the roof when she gets home from work for either forgetting or not finishing a job. I know my In laws are thinking what a bum he is not getting a job or doing things round the house. I am constantly being told by my wife that i am a waste of space, brain dead or a moron, i do not communicate half the time ( this is because i am in sooo much pain or don't feel with it). Its not that i don't want to talk its just that i need to deal with it the way i know. I don't socialise with people the way i used to as i don't feel up to it or am embarrassed because of the way i sometimes feel and speak. I know people are thinking " whats the matter with him, he don't look ill or he's had the operation now so why isn't he better. I just cant find a way of explaining why i don't feel better, if i try to explain people just make excuses for me. This is why i have titled this post as It must be your car. Let me explain. As you know by reading my other posts i am not well. My car has been smelling of petrol just lately , you can only smell it out side the car. I picked up my mother in law yesterday and she said " i can smell petrol" she then came out with the most ignorant thing to date, " that's probably why you have not been feeling well". She had obviously told my wife about the petrol problem and she then said the same. Oh my god. My three year old son tried to draw on our living room wall the other day and my father in law said, " don't do that, your daddy will have to get the paint brush out and that will be too hard for him i guess" in a way of sarcasm.

Brain Fog

April 20, 2006 -- Many Chiari patients ask whether Chiari has cognitive effects. In other words, can it effect critical thinking, problem solving, finding the right words, organizing thoughts, and other types of cognitive functions. This is not an easy question to answer.
On the one hand, many doctors dismiss a link between Chiari and problems with higher order thinking. They focus on the fact that Chiari tends to impact the cerebellum, which traditionally has been thought to control movement and not be involved in higher order thinking.
On the other hand, many adults with Chiari do report cognitive difficulties. These can range from difficulty in articulating thoughts to a general brain fog. In addition, many parents have reported that their children with Chiari may have learning difficulties or developmental delays. Unfortunately, anecdotal evidence such as this can often be misleading, and is not sufficient to say whether Chiari is the cause of the reported cognitive symptoms.
The best way to determine if Chiari is the culprit in cognition would be to evaluate a large number of Chiari patients, both adults and children, with a battery of cognitive and emotional tests to see if on average they score lower than the general population. and if specific problems can be identified. Such tests, known as neuropsycological evaluations (NPE's) are expensive however, and to date research in this area has been essentially non-existent.
Until such research occurs, with no direct evidence of Chiari's role in cognitive problems, indirect evidence is all there is to go on. As this publication has reported on previously, some researchers are beginning to believe that the cerebellum, once relegated to the basement of brain functions, actually plays a large role in a myriad of brain activities.
Studies of children with tumors in the cerebellum region, through NPE's, have demonstrated widespread cognitive deficits. In fact, one researcher has gone so far as to propose the existence of a Cognitive Affective Disorder, where diseases or pathologies in the cerebellum result in a variety of problems with higher-order thinking and emotion.
Another factor to consider when evaluating the possible role of Chiari in cognitive problems is that the effects of Chiari are not always limited to the cerebellum. For most Chiari patients, the malformation blocks the natural flow of cerebrospinal fluid (CSF) between the brain and spinal areas. This blockage can lead to an increase in intracranial pressure (the pressure of the CSF inside the head). Some research has shown that sustained, elevated ICP can lead to long-lasting cognitive problems.
Finally, one has to wonder about the lack of CSF flow itself. CSF bathes the brain and spinal cord and is continuously replaced. What effects does interfering with this natural process have? A recent study out of the University of Siena, Italy (Buoni et al.) may shed some light on this exact question.
In a report posted on-line in March, 2006 in the journal Clinical Neurophysiology, the Italian research team discuss three pediatric Chiari patients treated at their hospital (see Table 1). What makes these patients different is that they were not at first suspected of having Chiari - they didn't have any of the classic symptoms - but rather were being seen for more general problems, such as developmental delays, seizures, and neuromotor delays.
As part of their diagnostic work-up, and before they were found to have Chiari, all three children were given EEG's. An EEG is a device which measures and records the brain's electrical activity through sensors placed on a patient's scalp. In all three cases, the EEG's were abnormal.
Specifically, the tests showed what is called intermittent rhythmic delta activity (IRDA), which is considered a non-specific abnormal result (see Figure 1). In addition, the second patient's EEG showed abnormal spiking as well. The EEG's were recorded at several times for each child and under varying conditions, such as awake, asleep, etc.

Figure1: EEG Of Patient 1 Before And After Chiari Decompression Surgery

All three children were subsequently given MRI's and found to have Chiari malformations of varying sizes; one child had a syrinx as well. Despite the lack of symptoms directly attributable to Chiari, the physicians decided to operate, and the children underwent Chiari decompression surgery. During surgery, it was noted with ultrasound that CSF flow was severely or completely blocked in each case. Ultrasound also was used to ensure the restoration of normal CSF flow during the course of the procedure.
EEG's were given several times in the year following surgery, and for each child, were completely normal (see Figure 1). The researchers believe that the EEG results indicate a subtle level of distress of the brain tissue due to the lack of CSF flow, which resolved following surgery.
It should be noted that the specific type of EEG result seen, namely IRDA, is thought by some people to represent elevated intracranial pressure. However, the researchers in this study do not believe that is the case here, because the children showed no signs of raised ICP. In addition, evidence has to come light which casts doubt on whether IRDA is linked to elevated ICP at all, further bolstering the author's contention that the EEG findings are likely due to lack of CSF flow.
While it is only three patients, the fact that the EEG's normalized after decompression surgery and the restoration of CSF flow, is pretty compelling. The indirect evidence that Chiari can have a wide-ranging impact on brain function is mounting.
Hopefully, someone will soon look directly at the neuropsychological effects of Chiari so that patients may be properly evaluated and treated. Of course when that research does take place, at least based on this study, it should include EEG's before and after surgery.

HELP TO REINSTATE THE LICENCE OF A GREAT NEUROSURGEON

The medical license of Dr. Michael J Rosner, the Grandfather of the surgeries that has saved our lives, is being revoked because of the controversy surrounding the procedures and the lack of knowledge and lack of understanding by the majority of the medical community. Please help me, help him, by going to this website and signing the petition. Our lives and so many thousands of others who have yet to be diagnosed, are at stake! All of the research and technique and understanding ARNOLD-CHIARI MALFORMATION will be lost. This is a DEATH SENTENCE TO MY CHILDREN AND MANY OF YOU!!! http://www.thepetitionsite.com/1/REINSTATE-DR-ROSNER

My Chiari Story from a Man in the US

Take a look at the story of a guy in the states who had decompression and is still suffering on a daily basis.

www.youtube.com/watch?v=mg9P-fSY8_o&feature=player_embedded

Mystery Diagnosis film of Chiari

This is a film done by the Discovery Channel a while ago about a young model who was struck down with Chiari.

http://www.chiaritvspecial.com/chiarivideo.html

Paste in to your browser.

Sleep Apnea With Chiari

In today's hectic world, there are many reasons one might not get a good night's sleep; and now, according to researchers from the Sleep Institute in Sao Paulo, Brazil, Chiari, syringomyelia and basilar invagination can be added to the list.
Chiari has previously been linked with respiratory problems, and published case studies have indicated a potential link between Chiari and sleep apnea, so Dr. Botelho and his colleagues decided to scientifically study the incidence of sleep problems among people with what they term Craniovertebral Junction Malformations (CVJMs). They published their results in the December, 2003 issue of the Journal of Neurosurgery.
Sleep apnea is a disorder where a person actually stops breathing for more than ten seconds at a time during sleep and must wake up to breathe again. A person is considered to have sleep apnea disorder when he or she suffers more than 5 such incidents per hour during the night. Some sufferers endure hundreds of such episodes each night and as might be expected are pretty tired during the day.
There are two main types of sleep apnea, obstructive and central. Obstructive apnea is when breathing is disrupted by something blocking the throat - usually a narrowing of the windpipe. Central apnea is when there is a delay in the nerve signals from the brain which control breathing. Of the two, central apnea is considered to be more serious.
For the study, Dr. Botelho's team identified 32 people with symptomatic CVJM, verified by MRI, who had not yet undergone surgery. As a basis for comparison, the team also recruited 16 healthy subjects - with no neurological disorders - as a control group. All participants answered survey questions about sleep disorders and how tired they were during the day. In addition, the subject's sleep was physiologically monitored all night long at the researchers sleep lab, a process called whole-night polysomnography. The whole-night sleep study evaluated the following:

1.

The number of obstructive apnea episodes - no air flow combined with chest/abdomen movements for more than 10 seconds
2.

The number of central apnea episodes - no air flow combined with chest/abdomen movements for more than 10 seconds after air is supplied to the upper airways (through the nose, for example)
3.

The number of hypopneic episodes - reduction in air flow of more than 50% with chest/abdomen movements for less than 10 seconds
4.

The amount of oxygen in the blood

To analyze the data, the team divided the CVJM subjects into three groups: those with Chiari, those Chiari and syringomyelia, and those with basilar invagination. In addition they created an Apnea Index which was the number of apnea/hypopnea episodes per hour and established that an index of more than 5 constituted sleep apnea disorder.
While the survey/questionnaire results were unremarkable, the results of the sleep study were dramatic (see Figure 1). Fifty-nine percent of the CVJM subjects exhibited sleep apnea (more than 5 episodes per hour), while only 12% of the control group did. It should be noted that even the control group number is high; the general incidence of sleep apnea is around 2%, but the researchers attribute the high number to not screening for sleep disorders.
Looking at the CVJM subgroups is also revealing, with the basilar invagination group faring the worst, followed by those with Chiari only, then those with Chiari and syringomyelia. Among the basilar invagination group, 88% experienced sleep apnea disorder with an average index score of 23. Twenty three episodes per hour for eight hours of sleep means they were waking up more than 150 times during any given night. The average index score for the Chiari group was 16 which still translates to more than 100 episodes per night.
The basilar invagination group fared the worst when it came to central versus obstructive episodes as well. In the BI group, an average of 35% of the episodes were the more serious central type, versus only 4% for the control group. Here the group with Chiari and syringomyelia did a little worse than the Chiari only group with 18% of their apnea episodes being central, versus 12% for the Chiari group.
The researchers admit they don't know exactly why people with CVJMs experience such dramatic sleep problems, but they do suggest three possible reasons:

1.

Direct compression of the brain stem which houses the control center for automatic breathing
2.

Compression of cranial nerves which originate in the brain itself
3.

Altered nerve pathways due to a syrinx.

Certainly, compression of the brain stem is a plausible explanation as to why the BI group has the most problems, as basilar invagination involves the bony part of a vertebra being displaced upwards, often into the brainstem.
Whatever the underlying mechanism is, clearly trouble sleeping can be added to the laundry list of symptoms people with CVJMs must often endure.

DWP

I have been getting a lot of problems with the Department for Works and Pensions in regards to claiming Employment and Support allowance. I originally claimed for this in December 2008 and had to attend a medical at the DWP in April 2009 three days before my Brain Surgery and the day i came out of hospital i received a letter that told me i could no longer claim due to me failing the Medical assessment that was carried out by the DWP.When i attended the medical i asked the Doctor if she knew anything of these disorders to which she replied " No ".I looked at the Medical report and the assessment and found that they both contradicted each other.I decided to put in a appeal.I immediately got on to my MP who came to see me at home who was appalled by the way i had been treated and sent the DWP a letter along with one to the Benefits people.Within one week i received a letter telling me that they had looked into it with my supporting evidence and decided to change their decision.Money was back dated and i felt a great weight had been lifted. I received a letter in August 2009 asking me to attend another Medical Assessment at the DWP to which i attended.Again the Doctor had not heard of the Disorders and so i gave her some information regarding these.She asked me to do some exercises such as Squatting, Bending over to touch my toes and neck exercises to which my reply was " no i cannot do these as the pressure in my head causes me great pain and discomfort" Please also bare in mind i attended with a walking stick which i have had to use since surgery to aid my balance.I received the results back which again stated i was no longer eligible for ESA as i had not scored enough points.In the report it said i could do all the exercises i had been asked to do, I could read with no problems without the aid of glasses. I attended with my glasses as i now have to wear them all the time since surgery as this has affected my eyesight.It also said i could walk without the aid of a walking stick.I contacted my MP yet again and he sent them with my appeal to the DWP and Jobcentre Plus. I am still awaiting the results as it is now at a tribunal.

My Story

In my thirties i began to get some problems with fatigue.In my late thirties i began to see more problems such as severe headaches,blurred vision,electric shock sensations in my arms then eventually in my legs and running across my head,slurred speech,memory loss,drop attacks where i would just fall to the ground for no reason,impotence,frequent urination,Vertigo,Dizziness,the list goes on. In December 2007 i went to my GP who sent me for a MRI.I rang the surgery after approximately 3 weeks and was told my results had gone missing.The GP told me i was suffering with depression and gave me antidepressants.A year later and i was now feeling at my all time low i decided to go back to the GP.He told me i had Labyrinthitis because of the dizziness and sent me to a ENT specialist. I attended and the specialist told me it was a problem with the Cerebellum and referred me for another MRI.The results came back to the GP and he referred me to a Neurologist. I attended and he told me the results were OK and that i was suffering depression and referred me to the mental health team.I was not happy so i asked for the results of the MRI to take home.He stated that the latest results from the MRI had not come back but had some how found the ones from 2007.It said on the report that i had a 5mm Tonsular Ectopia, so i decided to google this and to my amazement it came up with Chiari Malformation.I did some extensive research and asked for a copy of my latest MRI images.It clearly showed a Herniation and so i asked the doctor to refer me to a Neurosurgeon . He referred me to a specialist in Liverpool who told me i had Chiari Malformation and referred me to another Neurosurgeon in Birmingham where i live.This specialist was great, he told me i had Chiari Malformation and also two syrinxes in my spine.In April 2009 i underwent Posterior Fossa Decompression to try and halt the progression of nerve damage.The headaches have stopped as have the drop attacks.I still have all the rest of my problems due to nerve damage and was told i may have to live with these problems for the rest of my life.