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Chiari Malformation Community
5.2k Members
1200240 tn?1289339687

Chiari UK

Is there anyone in this community from the UK? I live in Dagenham Essex England. I have not come across anyone else who suffers from chiari who lives near me at all, but i have seen a couple of websites of people with chiari who lives in the north of England. It seems to me that this chiari condition is more rare here in the UK than it is in USA. And it seems that no-one knows anything about the condition.
22 Responses
Avatar universal
yes i live in leicestershire am 35years old and was only found to have a chiari malformation aug 2009 so it all new to me :) would love to get in touch with a person in the uk rather then trying to find info all over the web as i still trying to learn about it please feel free to get intouch so we can chat some more
rach
620923 tn?1452915648
COMMUNITY LEADER
HI and welcome to the Chiari forum.

I hope u both continue to share ur experiences here with us and I hope we r able to offer u the info u seek.

I can also appreciate wanting to talk to someone closer to home : )

"selma"
Avatar universal
Hi,

My name is Johanna Briscoe and I was diagnosed last week with Chiari Malformations Type 1. I am having the sqme problem locatin anyone who suffers with this condition in the UK. I am from Totenham in London. I have just set up a blog to track my journey and raise more awareness in he UK.

Please get in touch it would be great to talk to someone in the same boat.

http://johanna-briscoe.blogspot.com/

Johanna
1435702 tn?1283631197
Hi I saw you are looking to meet others with chiari in the uk. I am holding an awareness walk in portsmouth on 3rd October 2010. If your interested please email me.
***@****

Also check out facebook chiari uk
and chiari.co.uk forums page
1372734 tn?1309950237
Hi like you all I live in uk in the cheshire area of the north west, I on this journey like you all are.

This site is an amazing place stick around post your worries and concerns you will be amazed at how much help and advice you get.
1446980 tn?1286838538
1375148 tn?1323166921
Hi im in ashford kent, x
Avatar universal
Hi all i live in warrington,cheshire i to have just been diagnosed with chiari, its a scary thing as i know nothing about it really. I go see the neurologists on the 18th july to discuss it all.

amanda
Avatar universal
kjljska
Avatar universal
Hi I live in bexley in Kent and its good to know of people in the UK that I can relate to...
1696596 tn?1317565840
From the North West, going to uni in Yorkshire. Been diagnosed and offered the surgery in the town where i go to uni but wanted it at home and now got an appointment with a specialist in Liverpool on the 12th. I definitely didnt see this diagnosis coming when i went to the doctors originally :) never even heard of it
1608330 tn?1298132998
Hi Im from the Northwest Cheshire I got diagnosed at xmas with Chiari still trying to fight my diagnoses to see if my RA has anything to do with the symptoms I hope we all get our answers soon
1719891 tn?1309290832
Hi I'm from Hertfordshire and I was diagnosed in January of this year -  it was quite a shock!  A lot of the information on chiari seems to originate from the US so it's nice to know there are people in the UK too :)
1435702 tn?1283631197
This years chiari meet up is on the 3rd of june 2012. Everyone welcome check out chiari walk 2012 on facebook. The meet up is a fun social event with a childrens entertainer. A great chance to chat to chat to others with chiari, share experiences and offer support. Please come along and make a difference.  xxx
Avatar universal
Hi Astra I'm from Co Armagh N Ireland and agree 150% with what you say no-one  knows anything so v v frustrating

Deborah
Avatar universal
Hi Rach,

I have just moved to Birstall in Leicester, I suffer from Scoliosis and have been diagnosed with Chiari within the past 5 years, I thought it was depression and find it so hard to tell people how I'm feeling.

Would be great to talk.

Andrea
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

The member u directed ur post to has not posted here for 3 yrs, they may still troll thru, but u may want to send a PM (private message) which will generate a e-mail that someone is trying to make contact....

U can also post a new thread as to meet some current UK members....we have a few....

U can also chat with ne of here, we all have Chiari or a loved one with it.

BTW- Chiari can cause depression and anxiety...u r not alone in how u r feeling, and all of us here understand <3
Avatar universal
Thank you Selma,

I'm 29 now and my symptons are getting more and more worst, my dizziness and mood swings are what upsets me the most.

I also have a prolapsed disc in my neck and my shoulder pain makes me feel sick.

Has anyone had any alternative therapies that have helped?

Many thanks
620923 tn?1452915648
COMMUNITY LEADER

  Until u get more testing to know ALL the related conditions u have it is not wise to only look to alternatives.....make sure u do not have a syrinx, obstructed CSF, EDS  other conditions then look at how u can treat this.

  Some have used a tens unit....and for pre and post op my NL suggested FELDENKRAIS method.....it is a form of stretching to get in proper alignment.....and proper posture.
5999456 tn?1378117827
I'm from the UK. Kent x
Avatar universal
hi im from fife scotland. my 8yr old son has ACS TYPE1. He has bad headaches daily which limit his lifestyle dramatically. he is only just back out of hospital after another severe migraine. he takes 2.5 propanalol x3 a day, but because he is in pain most of the day he has been having 4 doses calpol daily. now the doctors are worried in case calpol has affected his liver! headaches are so bad ive had to buy a small blow up pillow to take out with us wherever we go. he has to lie in a dark room with cold compress and put pressure on sore area. hes due another MRI nxt mnth then theyll decide what to do. ive had miraines for 15yrs and the past year they are daily. no medication is working. doctors said ACS isnt passed on through the family but reading some of your comments it clearly is. i had an MRI scan yesterday so will see what that shows. this is my first time to this site, if there is anyone who can chat when they have a spare minute that would be great. thanx
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

HA's from Chiari are usually not helped with medications....so it is best not to take ne, especially if surgery may be in the future as u do not want to build a resistance to the med and the help it can offer to the surgical pain....

Has ur DS had a CINE MRI to see if he has a CSF obstruction and testing for other related conditions?
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