Zipperheads uk

Latest Diagnosis of Ehlers Danlos / Benign Hypermobility Syndrome

2011-11-05T09:13:00.000-07:00

This is the latest in my journey to find out what is happening to me and to explain the symptoms i am experiencing.
I went to see my Pain managment consultant in September 2011. I explained to him that i was experiencing constant dizziness , brain fog, severe pains in my hips, ankles , neck , hands , wrists , knees etc. I told him that my head felt too heavy for my neck and that i had to keep resting my head in my hands and keep mostretching it out to give me some type of relief.
He ask me to do a series of tests called the Beighton test .Helps to determine the degree of joint hypermobility. Currently it is used as part of the Brighton Criteria. For a positive Beighton Score, 4 or more points out of nine are required (i.e. two elbows and two hypermobile knees):

1. More than 10º hyperextension of the elbows

2. Passively touch the forearm with the thumb, while flexing the wrist.

3. Passive extension of the fingers or a 90º or more extension of the fifth finger (Gorling’s sign). This is used as a “Screen Test”.

4. Knees hyperextension greater than or equal to 10º (genu-recurvatum)

5. Touching the floor with the palms of the hands when reaching down without bending the knees. This is possible as a result of the hypermobility of the hips, and not of the spine as it is commonly believed.

I scored a total of 7 points and he told me that he believed i was suffering with Benign Hypermobility Syndrome / Ehlers Danlos syndrome type III. He then made me a referal to see a Rheumatologist who specialises in these syndromes.
I attended the appointment with the Rheumatologist a couple of weeks ago where she asked me to do the Beighton test again, ( again i scored 7 points ) This time the Rheumatologist looked at scarring in various places on my body to see how they had healed ( papyraceous scarring ). She made comment of how my eye lids had drooped. She even tested how flexible my ears were.
She told me that i had BHS / EDS type III and that she would arrange for me to see a specialist Physiotherapist to help me with strengthening my muscles. She told me that it explains why i have cranial instability in my neck which explains the pains i am having in that area. I am now taking 400mg of Tramadol a day to help with the pain and 40mg baclofen before bed.
I am awaiting now to see a Cardiologist to see if he can test me for POTS as this may explain the dizziness. My Journey continues.

Major Criteria

· A Beighton score of 4/9 or greater (either currently or historically)

· Arthralgia for longer than 3 months in 4 or more joints

Minor Criteria

· A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)

· Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.

· Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.

· Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).

· Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs]).

· Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.

· Eye signs: drooping eyelids or myopia or antimongoloid slant.

· Varicose veins or hernia or uterine/rectal prolapse.

The Joint Hypermobility Syndrome (JHS) is diagnosed in the presence two major criteria, or one major and two minor criteria, or four minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.

JHS is excluded by presence of Marfan or Ehlers-Danlos syndromes (other than the EDS Hypermobility type (formerly EDS III) as defined by the Ghent 1986 and the Villefranche 1998 criteria respectively).

Criteria Major 1 and Minor 1 are mutually exclusive as are Major 2 and Minor 2.

The journey Continues

2011-05-24T05:44:00.000-07:00

Hi everyone, Just a quick post to let you know how things are progressing.
I had my appointment with a Neurologist at the QE earlier this month (May) and i explained that i was getting problems with my speech slurring, losing my sight in my left eye, the usual pains , headaches,fatigue and drop attacks, balance and dizziness.
He told me that it looked like i had brain damage either through surgery ( what !!!) or through a fall i had at work back in 2001 which i went to see him about when it happened ( i cant remember seeing him , in fact i cant remember seeing anyone let alone the accident ?). Anyway, he is sending me for a EEG to see if i ma experiencing Epileptic seizures . He will be writing to my Neurosurgeon with regards to my visit to him. I guess i will know more when i get to see my Neurosurgeon in June.

Friday just gone, i was pottering around in the garden,when i felt a pop in my head, i passed out with the pain it caused and when i came round, my left eye and mouth had drooped and my tongue on the left side had gone numb. I thought it may be one of my ridiculous headaches again, so i went for a lie down. All feeling came back later that afternoon and my headache had stopped with the help of copious amounts of pain killers. I went to see my GP on Monday (yesterday) and mentioned what had happened to him. He wasn't happy with the fact i left it to see him and said i should have gone to A & E as i may have had a bleed somewhere. He advised me to go and see a optician asap as he is concerned about my sight in the left eye deteriorating. ( today i have tried to get a appointment with about seven opticians, they all say the same, " sorry, we have no appointments for today) I have give up now as i really cannot be bothered anymore.). Its just a constant battle to be seen let alone be heard by anyone. I will leave it now until i see my Neurosurgeon or get another one of those attacks.

I will go to my appointment next month, knowing exactly what the outcome will be. ( "You have had the surgery, you are now cured, don't worry about that CSF leak you have , it wont cause a problem, its normal").Anyway rant over. I will post the outcome for you all to see next month.

Take care all, until next time.

Heart Problems

2011-05-09T02:59:00.000-07:00

Has anybody had heart problems ?

Just after Christmas 2010, i had to lie on my lounge floor after i got crushing pains in my chest, heavy sweating, pains in my left arm and up into my neck. It seemed to pass after about 10 minuets. My wife returned home from work later that day and said that i didn't look very well, i told her what had happened and she called the NHS direct who then called for a ambulance. They took me to my local Hospital and after a blood test and ECG told me all was fine but suggested i could have Angina so they gave me a spray to use under my tongue.

A `couple of weeks went by and i was asked to attend the hospital to see a cardiologist who sent me for a stress test. The results were fine, or so i thought.

Again, a few weeks went by and i received a letter saying that they had looked at my results again and it showed i was getting insufficient blood supply to the heart muscle, i would be called for further tests to be made.

Last month i was called in to have a angiogram done, the results showed that i had no blocked arteries ( what a relief ).

I have now had a letter asking me to attend the hospital for another scan as they are still not happy.

I wait in anticipation.

Has anybody else had these problems following Chiari ( can it all be connected ) who knows.

pseudomeningocele

2011-05-09T02:23:00.000-07:00

Hi everyone, just a little update to how things are with myself.
As most of you know, i am still having a lot of symptoms after decompression. Headaches, memory loss, vision problems, speech, pain, seizures, drop attacks, the list goes on.
I had a full MRI done in December 2010 and was told by my Syringomyelia nurse that my Neurosurgeon could do no more for me and that he was happy if i wanted to get a second opinion on the matter ? ( why would he say such a thing if he was so sure ). Anyway she basicaly told me that he could do no more for me surgicaly ( good news for me ).
I took the liberty of purchasing a copy of my MRI results . The reults are as follows.

Findings:

The small Pseudomeningocele at the craniovertebral junction is again demonstrated and appears unchanged since previous examination. The previously documented syrinx is no longer visible. The cord returns normal signal throughout the cervical, thoracic and lumbar region and the roots of the cauda equina appear unremarkable. A small posterior disc bulge is noted at L5/S1 level. There is however no evidence of neural compression.

That all sounded fine to me and i took it as gospel.

I recieved a letter from my NS in March , at the end it said " all i can do now is reasure Darren that he is not harbouring any serious or sinister disease process and i do not think that any further neurosurgical procedures are appropriate. If Darren wanted to meet with me and discuss matters face to face , then i would be happy to arrange a further appointment for him ".

I dont know if its me just feeling a bit touchy , but i found that bit of the letter very condecending.

I rang up his secretary and have booked a appointment for June and i will find out what can or cannot be done with this Pseudomeningocele, and could this be the cause of my problems.

Pseudomeningocele
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A pseudomeningocele is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.

Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.

Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.

What the hells wrong with you today.

2010-11-26T03:20:00.000-08:00

What the Hells the matter with you today, Watch where your walking, Just think, What have you been doing all day.

Do these words sound familiar to any of you. These are the words some people here on the rare occasion but to me it is daily.
Some people find it hard to get to grips that maybe i don't feel well and that maybe i try my damn hardest to do what i can. I am not being lazy, i am not being clumsy , i am not ignoring you, i am not miserable, i am not being rude.

It is because maybe i am suffering and don't want to show it to others and i try to keep it to myself. I seem clumsy because i have trouble negotiating my steps and use all my efforts to keep my balance, I haven't done all the jobs you have asked because i have exhausted my self and i have needed to stop at intervals throughout the day to rest. Sorry i didn't think because my mind is not my own any longer and i feel vacant a lot throughout the day. I am not miserable, i am just trying my hardest to cope with the pain and maybe i am trying to keep it to myself as i don't want to burden you. I am not being rude, i just sometimes either feel like i don't want to socialise or sometimes i feel so drained that i just need to rest my body.

I know i am not alone with these comments. Sometimes loved ones try to ignore these facts as it helps them cope as well.
It is like a breath of fresh air when you get someone who really cares and is really interested in helping you all they can.
I had a couple that i know approach me the other day and took me to one side so others could not hear and ask me how i was as they said they could see how i had changed.
As usual, i said I am fine , don't worry about me. This is something i have become accustomed to as i don't really have anyone to listen to me and share my worries and concerns.
I felt deeply touched by this couple offering their help and a ear whenever i needed it. Whether it was genuine or not, the thought was there. So thank you ( you know who you are ).

That's where these blogs and forums help us all as we all share the same problems. That is why awareness is needed here in the UK as it people will understand the torment we go through daily.

If you was diagnosed with say Multiple Sclerosis, people would understand as it is widely recognised and there is help out there for those sufferers.

God bless you all and thanks for reading this.

Chiari Meet up

2010-11-11T05:46:00.000-08:00

Hi everyone, just to let you know that i am organising a get together for all sufferers and partners/carers/family. I posted it on Chiari UK but this site seems to keep going down for some reason.
Anyway i have arranged for it to take place in Feb 2011 Dates either 19th Feb or 26th Feb which are both Saturdays. It will be in Birmingham in a chosen hotel just off Junction 7 of the M6 so its accessable to all. I have phoned a number of Hotels and have found some desent prices. Perhaps i could have your views on the dates so i can get it booked and the number of people who care to attend. please contact me via email daz.norton01@blueyonder.co.uk. I look forward to hearing off you. Meanwhile i will endevour to post it on the Chiari UK.

Chiari support forum down

2010-07-24T05:10:00.000-07:00

Hi all, as some of you know the UK support forum is down at the moment and at a crucial time as well. I have contacted a few members and suggested we all use my forum Chiari care (follow the link above )for the time being so we can carry on our posts .
Please feel free to use it any time .

Darren

Chiaricare forum

2010-05-25T02:39:00.000-07:00

Hi, just to let you all know, i will be shutting down my Chiaricare Forum sometime this year. I will let the subscription run its course and i will not be renewing it as this has shown to be unused. I Understand that Chiari UK forum is widley used and hoped that my one would also become popular. The reason for the failure of this forum is because of the lack of members.

Thank you to all who became members and i hope you continue to visit my blog.

Regards

Darren

My Story in the News

2010-05-12T03:29:00.000-07:00

Hi all, some of you amy have read that i approached my Local Newspaper some time back ( The Birmingham Mail ) regarding my story. I had not heard back from them for months and thought that they had forgot about it, as they said they would contact me when i went to press. I attended hospital for a infusion study yesterday and my NS issued me with a copy of it whilst in theatre. I did not know it had been published.

It reads

BRAIN DISORDER DAD IN NHS WARNING

A Birmingham dad is urging the NHS to raise awareness of a rare brain disorder which was only diagnosed after he consulted US specialists.
Darren Norton from Great Barr fears more people in Britain could be suffering from Chiari Malformation (CM).
The 40 year old former construction Site Manager started having severe headcahes, vertigo,blurred vision, and numb limbs three years ago.
But his symptoms where passed off as Depression or Labyrinthitis, inflamation of the ear, by Doctors.
Darren who says the condition is so debilitating it is stopping him from being a proper Father to his three year old son, was adamant it was neither.
Next his memory began to deteriorate and speech started to become slurred, so he returned to Doctors and was advised to have an MRI scan at Sandwell Hospital in May 2007. He said medics feared he could have Cancer.
But the results never materialised and Darren went for a second scan, this time at Walsall Manor Hospital late in 2007.
The results arrived early in 2008 along with findings of the first test.Both scans tested negative for cancerous cells, but did suggest his symptoms could be linked to CM.
Darren who lives with his wife Victoria and their son, then undertook months of research online into the condition which he had never heard of.
He uploaded images of his scan results onto the American Syringomyelia Alliance Project Website and also spoke to bloggers on Conquer Chiari, an American internet forum dedicated to CM.
"They all suggested i'd got CM and that i needed to see a Neurosurgeon" he said. " it was great relief to hear that i'd got a problem and wasn't just making it up or being a Hypochondriac".
Darrens fears were confirmed by a Neurosurgeon at Selly Oak Hospital and seconded by an Expert at the Walton Centre in Liverpool, the only practice in the country dedicated to the dedection and treatment of the disorder.
Darren underwent Brain Surgery at Selly Oak Hospital in April last year to address the condition, which affects the Cerebellum in the Brain and often leads to Syringomyelia- the formation of cavities in the spinal chord.
But he still suffers from many of the initial symptoms and relies on a daily course of medication and painkillers.
He will meet a consultant at Selly Oak Hospital in the coming weeks to find out whether he must have more surgery.
Darren, who has been out of work since forst suffering from the disorder, is now putting all his efforts into setting up a forum to help sufferers in the UK.
He is also lobbying the NHS to produce a pamphlet on CM to be distibuted to GP Surgeries.

The New Sick Note

2010-04-15T01:23:00.000-07:00

The Goverment has now changed the way GP's issue sick notes....Below is a extract from Direct Gov explaining the new note which is now called the Fit Note.

The fit note replaces the sick note. It is the new form that your doctor will give you when your health affects your ability to work. Find out how the fit note can help you and your employer manage your return to work after illness or injury.

Replacing the sick note
What has changed?

The fit note allows your doctor to provide you with more information on how your condition affects your ability to work. This will help your employer to understand how they might be able to help you return to work sooner.

The changes mean that your doctor can:

* advise when you may be fit for work with some support
* suggest common ways to help you return to work
* give information on how your condition will affect what you can do

What stays the same?

The fit note can still be used as evidence for why you cannot work due to illness or an injury. You still won't need the fit note as evidence until after your seventh calendar day of sickness.

If you need to apply for benefit the rules and processes have not changed. If your doctor has recommended that you 'may be fit for work' you can still apply for benefit.

The requirements for the payment of Statutory Sick Pay have not changed. If your doctor recommends that you 'may be fit for work', and you and your employer agree that you should remain off work, you should still get Statutory Sick Pay.

Understanding your fit note

When your doctor provides you with a fit note they will advise you of one of two options. You will either be 'not fit for work' or you 'may be fit for work'.
'Not fit for work'

Your doctor will choose this option when they believe that your health condition will prevent you from working for a stated period of time.
'May be fit for work'

Your doctor will choose this option when they believe that you may be able to return to work whilst you recover with some help from your employer.

Your doctor is able to include some comments which will help your employer understand how you are affected by your condition. If appropriate, they can also suggest one or more common ways to help you return to work.

This could include:

* a phased return to work - where you may benefit from a gradual increase in your work duties or working hours, for example following an operation or after injury
* altered hours - allowing you the flexibility to start or leave later, for example if you struggle travelling in the 'rush hour'
* amended duties - to take into account your condition, for example removing heavy lifting if you have had a back injury
* changes to your workplace - to take into account your condition, for example allowing you to work on the ground floor if you have problems going up and down stairs

Discussing your fit note with your employer

If your doctor has indicated that you 'may be fit for work', the fit note will give your employer the information needed to begin a discussion on whether you can return to work.

If it is possible for you to return to work agree:

* how this will happen
* what support you will receive and for how long
* how your pay may be affected if you return to work on different hours or duties

Sometimes it may not be possible for your employer to make the changes required to help you return to work. If this is the case, you will not be able to return to work until you have further recovered. You can use the statement as if your doctor had advised you were 'not fit to work'. You will not need to see your doctor for a new fit note.
Disagreements with your employer about returning to work

If you do not agree with your employer on when and how you will return to work you should explain to them why you disagree. There may be issues which your employer was not aware of when they made their decision.

If you are a member of a trade union you may want to ask your union representative to help you with this conversation. Alternatively, you might want to seek support from a local advice centre, eg a Citizens Advice Bureau.

My Trip to the Walton Centre

2010-04-11T09:22:00.000-07:00

Friday 9th April 2010 i was woke by the horrible tone of my alarm at 4 in the morning for my long journey to the Walton Centre Liverpool for my appointment at 9 am. Half 4 a slow walk to the bus station for my bus to Birmingham New street station to board my train at 6. All went well until i got on the train and to be told that there was a delay because of over running engineering works on the tracks between Birmingham and Wolverhampton, 15 minutes all together. A long and boring journey stopping at every station along the way. Finally reached the wonderful station of Liverpool Lime Street. Down the steps into the bowels of Liverpool to get my underground train bound for Fazakerly. Reached my destination at 08:50 and Bang on 9 for my appointment.
Now three weeks prior i had received a letter from the Walton Centre saying i had a appointment to see a Neurologist, not who i had asked my GP to see. I called the Walton Centre two weeks before the appointment and explained that i had asked my GP to refer me to a Neurosurgeon who had been recommended. They told me i had to get my GP to do another referral for the NS in question, this i did. Again i received another appointment with the same time and date and the same neurologist. Back on the phone to the Walton and they did tell me that the referral had been received to the NS i had asked for but there was a thirteen week wait. Thursday 8th April, the day before my first appointment which was incorrect, i called the Walton Centre to ask if that appointment had been canceled to which there reply was no. I asked them if it would be worth my visit as i was getting desperate, they told me it would be worth while as i may get the answers i needed. Upon my arrival to the Centre i was told to sit and wait in the allotted area. I was finally called in at 09:40, forty minuets later than i was expecting.I got to see a Professor of Neurology, not the person i had been told i would be seeing, although i cannot speak highly of this Professor, a true professional and a thoroughly nice chap. he sat me down and told me that it was beyond the help of a neurologist and that i had to see a Neurosurgeon ( what had i said all along ). I could feel my blood starting to boil as this had been a long journey and felt i had waisted my time ). He stopped me in my tracks and said that the NS i had asked to see was in the building doing his tour of the wards and would call him to see if he could fit me in. I was thrilled with this and hoped for the best. Finally 10:30 the NS came to see me. What a lovely man, again cannot speak highly enough about him. He answered all the questions i had for him, he told me that all the damage i had received to my nerves was irreversible. He looked at my old scans pre op and told me that i had a syrinx in my brain stem ( I had not been told this before ) and that i also had a syrinx in the thoratic area of my spine ( i knew about this but thought nothing more of this) He told me that i really should have had a full MRI ( not what i had )and that he would like to investigate it further in case something else had caused the Syrinx there, he did say that he may not find anything. He explained that all the symptoms i was getting was typical of Syringomyelia. I was beginning to think i was imagining it as my first NS told me that this is not the case. I walked away not only a bit saddened regarding the fact i will have to live with these problems for the rest of my life, but also happy ,knowing this now at least i can work around it, Make the most of my good days and listen to my body and rest on my bad days, also regarding work, i can at least now find something working from home or part time, i will have to wait and see. My Family are a bit sad about it but i am not, it is a relief really. I am sure you all understand. The day was perfect for me , i managed to get to see the NS i asked for in less than thirteen weeks and had all the answers i needed. The NS has also wrote a letter to my GP explaining all of what we spoke about that day and has asked him to refer me for another MRI, This time a full one, and in my home town rather than make that journey again. He said that when i have had it, to get the images put on disk and send them up to him so he can take a look, he would then call me with the results and tell me if i needed further surgery, this again will save me a journey. So in all a good day, over the moon so far.
I made the most of the rest of my day by taking a look round Liverpool and visiting the local attractions. Although all of the traveling and walking around with my trusted walking stick has put me in bed for the last two days, riddled with pain.
I am so happy with the Walton Centre and have heard good and bad reports about it, every ones story is different. A+

Interested in joining the AA Sir

2010-03-25T05:13:00.000-07:00

Just a funny little story which happened to me the other day with regards to speech problems with ACM. ( or i have suddenly become fluent in another language ).
I was walking through my local shopping centre when a nice young lady stepped in front of me and asked " would you be interested in joining the AA sir " My reply was supposed to be , I am already in it thanks. Instead it came out as Rinitamldyeal. What the hell is all that about. Lol. This can be quite embarrassing at times but i have now become used to it and have to laugh to myself. This poor girl must have thought i was a foreigner.

Craniocervical malformations can cause speech disorders as a result of paralysis, weakness, or incoordination of the speech musculature, with motor and functional disorders that affect phonation, resonance, articulation, and prosody [46].

Speech, swallowing, phonation, and respiration are functions that may be disturbed in people with Chiari syndrome and syringomyelia. They are part of the rehabilitation realm of the speech therapist. In children, in addition to the functional disorders mentioned above, language development and learning may be affected. Speech therapy has two types of intervention: preventive and palliative.

When a deviation from normal function is detected, even if it is mild, the patient and family members must be informed about the difficulties that may occur as the condition progresses. Reinforcement of swallowing, respiration, vocal tension and reading skills is important to preserve such functions. If no rehabilitation is initiated one problem can lead to another. For example, buccofacial motricity disorders can lead not only to swallowing disorders, but also to chewing and phonation abnormalities. Once the lesion is established, speech therapist interventions are palliative, targeting the areas where dysfunction is identified.

The Pits and the Pendulum

2010-03-23T01:35:00.000-07:00

As some of you know, i had Decompression in April 2009. I still have a range of symptoms remaining.I have dizziness and balance issues on a daily basis, most days are bad and some very bad. It is even worse when i change the position of my head. The only way i can describe it is, it feels as though the cerebellum is like a pendulum, it is constantly swinging slowly, i move my head and it causes it to swing even more ( the Pendulum part of the post title ). On the really bad days i get bad fatigue with it also. I still get the occasional headache which causes one of my eyes to droop as well as my mouth. on my very bad days i have to use a stick to aid my balance as walking becomes a problem, My speech becomes very slurred also. The other day i went into my local shop, without my walking stick and was having a very bad day. I could hear the shop owner and a customer saying how disgusted they were that i was drunk so early in the day (little do they know).This has, along with the issues fighting to get the Benefits to listen has given me depression, yet more medication ( hence the pits part of the post title).
I went back to my GP in September to ask him to refer me back to my Neurosurgeon. Come February this year i still had not heard anything. I called the NS secretary and she told me that they had not received a referral letter from my GP ? She also told me that the NS had just had Major surgery himself and would not be returning until June this year and then it would only be for consultation and not surgery. She told me that he would not be offended if i wanted to see someone else. I returned back to my GP and asked why he did not send a referral letter. He said it was most likely the Receptionists fault. I asked him to refer me to the Walton Clinic in Liverpool and he told me it was not that simple ( bureaucratic) was his words, and that he would have to write to my current NS and that he would then have to write to the Walton centre. Of course i took this as gospel, what did i know i am not a doctor. I called the Walton clinic my self to ask if this was true to which they replied no. Off again to my GP and this time i was very blunt with him and instead of asking, i told him to refer me. This worked a treat as i am sure he could tell i was not happy. I have now put a formal complaint in to PALS about the conduct of my GP and i am moving doctors.
The dizziness issues have become an embarrassment to me because people look at me funny thinking i am drunk and along with my slurred speech and difficulty trying to find the right words when talking.
I hope that one day someone will listen and help me get rid of these wretched problems.

Formication

2010-01-20T06:39:00.000-08:00

Some of you may have experienced the feeling of something crawling under your skin, Itchy skin. I have experienced this for over three years every day and it drives me mad. It feels as though there are ants crawling over my skin which is all over my back, head, face , arms and back. I see on alot of Forums are having people ask if this is a symptom of Chiari / Syringomyelia. It is a symptom of these conditions and it is known as Formication .The experience of formication may sometimes cause feelings of itchiness, tingling, pins and needles, burning, or even pain. When it is perceived as itchiness, it may trigger the scratch reflex and because of this, some people who are suffering from the sensation are at risk of causing skin damage through excessive scratching.
Here is a link to the Wikipedia site for more information

http://en.wikipedia.org/wiki/Formication

Can You Work

2009-11-26T03:42:00.000-08:00

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

2009-11-21T07:56:00.000-08:00

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

2009-11-11T06:51:00.000-08:00

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

2009-11-06T09:06:00.000-08:00

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

2009-11-05T05:33:00.000-08:00

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

2009-11-05T04:31:00.000-08:00

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

2009-11-03T06:03:00.000-08:00

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

2009-10-29T12:02:00.000-07:00

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

2009-10-27T06:44:00.000-07:00

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

2009-10-27T03:37:00.001-07:00

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

2009-10-24T09:39:00.000-07:00

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

2009-10-22T03:44:00.000-07:00

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

2009-10-20T05:45:00.001-07:00

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

2009-10-20T05:40:00.000-07:00

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

2009-10-17T09:52:00.001-07:00

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

2009-10-16T07:42:00.000-07:00

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

2009-10-16T07:21:00.001-07:00

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

2009-10-16T06:56:00.000-07:00

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

2009-10-16T06:55:00.001-07:00

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.

2009-10-16T05:39:00.001-07:00