Chiari Malformation associated with EDS in the UK?

I found the link below whilst thinking of how I can possibly get someone to take a member of my family's severe neck issues seriously.  Apart from the obvious & repetitive reply, which is EDS is a painful condition etc..

I find it fascinating that in the UK Chiari is rarely mentioned in association with EDS, yet in the US I increasingly find more and more blogs with people diagnosed with EDS being treated for symptoms associated with Chiari.  I don't know why this condition is not really discussed even by the professionals renowned for their knowledge of EDS in the UK.

It seems many symptoms including POTS, swallowing difficulties, ear problems and more are associated.  I find the reading of  the surgery for this condition really pretty scary.   I have read recently of some sort of scandal associated with a doctor there who treats Chiari EDS patients?

There is a Chiari Institute in the US which it seems on reading blogs patients travel thousands of miles to for help.

I am left confused really about the whole thing  because in the UK mention the word Chiari to a medical professional & there is a stony silence.  Please don't misunderstand me I don't yearn to have this or think I have it already.  Its a complex medical condition and to be honest much of it mystifies me.  But I do wonder why my (& other family members with EDS) neck and associated issues have never been explained or in fact treated, when in the US it seems common place that if you have EDS there is a high probability that you also have Chiari Symptoms.

http://www.nwrei.org/downloads/Education/Francomano.pdf

A Reminder....

I have in my reader 5minutesforspecialneeds a blog I read daily.  Initially I found this community blog via  mythreeringcircus  a blog beautifully written, which makes me both laugh & cry, often in the same post.  I have Veronica to thank  at somedaywewillsleep a fellow EDSer for her blog roll otherwise I would never have had the opportunity to read these blogs written from the otherside of the world.     

I was so saddened to read  that Anissa has suffered a massive stroke..  5 minutes for special needs is a site which I visit to remind me that remaining positive in adversity is the single most important factor when one is having a day that seems impossible to get through.  Put simply it is inspiring as are the blogs associated with it.  I have dedicated this post to Anissa & her family.  I know that I do not know them personally but through the internet I have been able to follow their story.

Anissa fought her daughter’s cancer at Hope4Peyton, & she celebrates their cancer-free life at Free Anissa & provides the blogosphere with laughter at Aiming Low.  Anissa has worked I read at  5minutesforspecial needs for a long time behind the scenes.

I don't know whether when I say I am thinking of Anissa constitutes as prayer & that all the individuals collectively thinking of Alissa & her family will help, I can only hope with all my heart that it will.  So if you are reading this post, please could you spare a moment to send healing thoughts for Alissa &her family.

So as I sit here tonight it seems to me that any small troubles I have are put in perspective.

Postural Orthostatic Tachycardia

A link to some research on POTS  treatment

For more in depth information on this often debilitating condition pay a visit to http://dinet.org/

At the moment I am getting strange sensations on my scalp, which come from nowhere.  Earlier we were sitting watching tv when I felt as though I was getting mini electric shocks/tingling under the skin on my scalp.  I tried ignoring it until husband asked if my eye was ok as that was drooping.  How nice it had been before this, a rare moment on our own in front of a roaring fire.   I have been having this on and off for a while.  It does seem to coincide with a flare of PHN, so I guess nerve endings.  Sometimes it occurs when I bend my neck.  No matter.

The days I like were just like today.  A lazy Sunday.

guilty pleasure

I have restricted access to the internet at the moment.

It feels strange when I look in my reader and see so much happens in such a short amount of time. 

To alice @ i'm confused - I am hoping your neck is improving.

If I am not commenting on a blog which normally I do - its because I need a new laptop & rely at present on daughter's who is working extremely hard for uni.  I am so very very proud of her, EDS for her is much worse than mine at the same age.  I feel helpless when she suffers so much pain - she says the only person she can really talk to about it is me as she knows I understand.  I do and because of this some days I feel angry toward some people in our lives who seem to make a very good job of denial of this debilitating and very real condition.  It must seem on reading this blog that it is the whole focus in our lives - this is not true.  I write of it here as an outlet.  We send each other texts some of which go like this -

how is your day?

EDS crap?

take your time, I understand.

               These can be from either of us - the same applies.

In the meantime -

   I am thinking thoughts like this - my godaughter is presently very very unhappy with good reason.  When one signs up for the responsibility of the role - it is impossible to imagine that a parent would die.  This happened when she was four years old now 24..   After a long talk with my conscience I decided that in the abscence of one parent I had to speak out.    I wish with all my heart that I could turn back time.  I can't.  I am not particularly religious - I did make a promise and will keep it.  I just wish the other two godparents had kept theirs - we could share the task.  This godaughter of mine whom I held in my arms when she was under an hour old, holds a place in my heart forever.  So if you are asked to be a godparent - make sure if required you can do more than send a birthday card. 

Having being unwell for a ridiculously long time I am beginning to unwrap myself from the cocoon.  I find myself in the most untidy house I have had in a very long time. I am noticing I am pacing better than I did as more than a little overdoing renders me useless to all.  I have moved on from soup soup soup to advocado - a positive step forward.  Figs seemed tasty today, husband smiled as I carefully wrapped some parma ham around three ate two, moved on to a warming mug of ovaltine and without realising it ate three fig roll biscuits.  I wonder what these cravings say about what my body needs right now.  I know I am feeling better as silly things are making me laugh again.  Especially as I have just read that paragraph through and wondered if my craving for figs suggests constipation - at the minute this is not the case but cannot remember what vitamins are in figs - parma ham I have no doubt is just salt!

Next week return to gp for results of blood tests which were taken by the trusted phlebotomist (sp) at surgery who uses paediatric needles and is the only person who doesn't leave me battered and bruised.  The sticky pads used for the heart trace however left squarish red marks dotted all over which are still there.   I actually think that when I return next week all will be well with all of the results.  EDS patients can present as extremely poorly when their immune system has taken a battering and gp's not familiar with the condition may panic a little.  Reminding me of a well known character's words, in an old sitcom (truly showing my age) called Dad's Army, a  series following the antics of the Home Front. 

                    'Don't panic Mr Mannering, don't panic'

To those whose blogs I read that may need a virtual hand to hold - mine is there.  If you have a tale to tell - I will read it.   I will smile at your anecdotes.  Try your recipes.  I will feel genuinely happy when you are happy and the rest.  In return I only ask that you keep on blogging.  So that when I manage to get on line - my reader is full to bursting. 

Blogging is my guilty pleasure - Whats yours?

The Ten Minute Rule & other completely random blah.....

I wrote a comment  here in response to an excellent post written on gp's.

(Edited to take away my copied comment as I get very confused about copyright and permissions etc)  Like (poor english I know don't you just love it) am I allowed to copy my comment on a blog or does the comment become the property of the author because its on their blog. 

Basically if you can't be bothered to read this post and that one as well it was discussing GP's these days.  It struck a chord with me because I often fondly remember my childhood gp who would hold an outreach surgery in the local pub.  These days health and safety and safeguarding laws etc would apply but that is a whole other post.  Anyhow, my comment basically said I have a fear of the new gp and prefer my 'own' who knows me. 


So I retract my thoughts on new gp's because -

The 'stranger doctor' was kind, empathetic and gave me soooo much time that I felt I should remind him that there are large notices everywhere in the waiting room

stating this:- please note that all appointments last 10 minutes only - If you have a complex problem you may be required to make a further  appointment.  This is practice policy. 


I feel I will soon be feeling better - more antiobiotics.  This is my theory and I am sticking to it.



I am ignoring the out of control heart beat and various boring symptoms.  I agreed to go have a plethora of blood tests and ECG.  I always get a galloping heart rate when unwell so for me its not unusual.  I am not sure why I am dehydrated when I am drinking loads and also ignored anything really he said that I didn't like about my heart etc.  Like this... bearing in mind I was concentrating on not listening properly - 'have you ever been diagnosed with a heart defect'  the rest I pretty much tuned out to... I have developed this as a coping strategy in dealing with EDS and I like it. 


Husband waiting in car said he had to leave the waiting room as the tapping feet of poorly people blaming the short woman who had disappeared into the consulting rooms it seemed never to return - were staring at him and sighing the type of sighs that insinuated it must be his fault that I had still not returned 45 minutes later!  


Anyway thats the boring boring boring I am still sick as an f;..ing pig part 


I am determined to do some knitting so it looks as though tomorrow I will get knitting rage - organising the large unruly bag of various unfinished 'stuff' and intertwined balls of wool which have somehow argued in my abscence and now resemble a knitting nightmare.  I hope no avid knitters are reading this as I feel they may well be wincing.  I stuffed the large bag behind the sofa in the vein hope the wool would magically make up and be friends again.  however as I type it appears the knitting equivalent of spaghetti junction is erupting.  Actually I am beginning to think my dog may well have something to do with this mess as I have just spied a random ball of wooll in his bed humph... I think he knows I am talking about him now as his tail is wagging and I swear he is smiling.


I have in mind a couple of posts I may or may not make in the future at some point.  One is about MS, a while back I think I discussed briefly or it may just have been a thought - how having a rare condition like EDS make people's faces blank when mentioned and that sometimes I have a tiny urge just to lie and say I have MS... not because I am mad just so that I wouldn't have to have the boring EDS explanation talk which people don't generally understand anyhow.  


Some of the symptoms of MS can it seems to me mirror EDS.  I don't really know how to post about it for a few reasons - primarily I seriously don't want to offend anyone having the misfortune to suffer with the debilitating symptoms of MS and I want it to be a reasonably well thought out and possibly endeavour to make some sort of intelligent post.  Along with the secret envy I have at the support network - (UK) provided for those with MS which simply does not occur with EDS.  By support network I am talking NHS not internet support groups - for example I note my local hospital has an MS Clinic.  I am putting this here today in part to serve as a reminder to myself.


Another post I have in mind is still at the 'all in my head' stage - so again this is another reminder to myself.


When I am stressed/bored, sometimes - I find myself thinking/doing things which make me laugh ... today when I had waited an eternity and was 8th in the queue on the telephone to make a gp's appointment. I became aware I was getting irritated and wanted to ensure I was not rude to the poor receptionist when I finally got through to speak to a human being... So by way of stress busting I was busy having a one sided conversation with the recorded 'person' on the telephone who kept interuppting some god awful music to let me know how well I was doing in the queue and informing me of other services the practice offers.  I was taken aback when suddenly a real person started talking to me (bearing in mind I was in the middle of telling the recorded voice that - no I haven't had a holiday yet this year and if I had my choice I would be flying off to somewhere exotic for Xmas bla bla....


I accepted the appointment with the 'stranger gp' readily to avoid the embarrassment of explaining why I was talking to the recorded voice...  However the new gp had a surname which I found funny - I had better not say it here because thats not fair on him.Suffice to say that the receptionist probably thinks because I said the nature of my request for an appointment was personal (in part because I was going to the doctor because I flippin well needed a diagnosis for god's sake) and I sometimes think they ask out of sheer nosiness.  Combined with sniggering like a very immature teenager at the silly name and the ridiculous conversation I was having with the recorded voice - she no doubt thinks I was making an appointment to discuss my ongoing and obvious madness.  


When I relayed my silly little tale to my other half of my predicament, he sighed heavily and wrly suggested that he thought my sense of humour was a little warped because the name only made him think of an eminent figure in the public eye; he also pointed out that the receptionist wouldn't have known I was talking to the 'voice' which I think is wrong because I was having such an animated albeit somewhat one sided conversation. I didn't realise the receptionists voice and the recorded voice were different.  On thinking about this further I think in fact they were one and the same just the former one ' she had made earlier'.  

Because we have been married a long time and therefore prefer these days to avoid a potential argument, I ignored the urge to tell him he was being pedantic.  Of which I was very proud of myself indeed.  Also to be fair he was the kindest nicest most patient husband in the whole world this weekend when I was not at my best and I felt he deserved a little slack.


So I am finishing this post now thinking this - I must not say to teenage son who kindly hung some new tab top curtains (edited to add - actually they are not new a relative moved house and was throwing them away)  in the living room because I am too short and other EDS stuff.... why oh why have you hung them back to front or inside out whatever the words are for what he has done.  Instead I will do that think of something funny thing instead........    I fear however on my track record to date this may backfire on me!