Joojoo Posted November 27, 2009 Share Posted November 27, 2009 Hi My main reason for posting this thread is to try and raise awareness of a relatively unknown condition called Chiari Malformation as so little is known about it. There is a petition running here http://petitions.number10.gov.uk/ChiariAwareness/ and I wondered if you would all be kind enough to sign it please? I don't know if anyone else on here suffers from this but as I've mentioned before I've suffered from headaches for 20+ years. In the last few weeks I've officially been diagnosed as suffering from Chiari Malformation http://www.chiariinstitute.com/chiari_malformation.html. It is caused by a deformation which occurs during foetal development at the base of the head which allows a portion of the brain (cerebellar tonsils) to drop down and can cause some or all of the following: Severe HeadachePainful tension in neckFatigueMigrainesDizzinessVisual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmusTingling / numbness in the extremetiesGeneral imbalance / clumsinessMemory lossRestricted movementIntolerance to bright light / difficulty adjusting to light changeVertigo from position change or sudden standingDifficulty walking on uneven ground / feeling ground under feetPoor / degraded motor skillsDifficulty drivingDifficulty negotiating stepsPressure / pain in the neckPressure / pain behind the eyes (soreness in the eyeballs)Back painNeck spasmsInsomniaRinging in ears (like the tone heard in a hearing test)SwayingPain when changing positionTingling / crawling feeling on scalpIntolerance to loud / confusing soundsDecreased sensation to touch in extremetiesDecreased sensitivity to temperaturePain & tension along ear / eye / jawlineDifficulty swallowing / lump in throat / sore throat / swollen lymph nodesDroolingSpontaneous vertigoHand tremorsPoor blood circulation / cold hands & feetSinus / mucous problemsSleep apneaDecreased muscle tonePressure in ears / ears feel stopped upNauseaDifficulty reading / focusing on textDepth perception problemsBurning sensation in extremeties / shoulder bladesMenstrual problems / severe cramping during periodFluid-like sound in ears (like water running)Loss of sexual interest / lack of sensation in pelvic areaPulling sensation while sitting / standingIntense itchiness w/profuse sweatingSlurred speechGag reflex problems / lack of gag reflexPressure / tightness in chestLoss of bladder controlFrequent urinationDehydration / excessive thirstElectric like burning sensationsUnequal pupil sizeLoss of tastePopping / cracking sounds in neck or upper back when stretchingDizzinessLoss of smell / problems with sense of smellDry skin and lipsSudden / abrupt changes in blood pressure due to awkward position of headHiccups associated with drinking carbonated beveragesSkin problems Unfortunately I seem to have about 50% of the symptoms above including the headaches which are indescribable. However, I'm not going to dwell on all that. I'm now waiting to see a Neurosurgeon at Walton Neuro Hospital in Liverpool and hopefully will be suitable for decompression surgery. It's quite a big op that takes about 4-5 hours but I'm really excited about the prospect of it now - that probably sounds very weird but the thought of the headaches and everything else being gone after so long is amazing Many Thanks Jue Quote Link to comment Share on other sites More sharing options...
susanbb Posted November 28, 2009 Share Posted November 28, 2009 Signed for Awareness Quote Link to comment Share on other sites More sharing options...
Joojoo Posted November 28, 2009 Author Share Posted November 28, 2009 Thanks Susan I had never heard of it prior to being diagnosed but unfortunately neither have many of the GPs in the UK either which means that people suffer for years and years being misdiagnosed with depression or stress amongst many other things Quote Link to comment Share on other sites More sharing options...
xScrunchee Posted November 28, 2009 Share Posted November 28, 2009 Signed Quote Link to comment Share on other sites More sharing options...
Becka Posted November 28, 2009 Share Posted November 28, 2009 Thanks for the information. I know two people who suffer from headaches, tingling in their extremities, balance problems etc who have had lots of tests via their GP which have turned up blank. I'm going to pass on the information you posted and let them take it from there. I hope you are able to have the operation so you can hopefully find some relief from your symptoms which sound very debilitating. Becka Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted November 28, 2009 Share Posted November 28, 2009 I've signed . I really hope you get the treatment . It sounds like an awful thing to live with . Quote Link to comment Share on other sites More sharing options...
Guest Posted November 28, 2009 Share Posted November 28, 2009 remember, we're not too far (and Ian only works a cple of miles away) from Walton hospital, about a 1/2 hour drive-ish from where we live, so, unless you know anyone closer, if you need anything while you're in there, just shout x Quote Link to comment Share on other sites More sharing options...
Couperwife Posted November 28, 2009 Share Posted November 28, 2009 signed doesnt sound like a fun ride, I hope you get sorted with it cathy x Quote Link to comment Share on other sites More sharing options...
chelsea Posted November 28, 2009 Share Posted November 28, 2009 Goodness Jue, you poor thing. I am happy that you've finally got a diagnosis - it must be a relief to finally have it "recognised" as something. I can't imagine what it must feel like, sending you a big (((hug))).xx Quote Link to comment Share on other sites More sharing options...
Joojoo Posted November 28, 2009 Author Share Posted November 28, 2009 Thanks for your support everyone (Justine thank you so much - you know how much I appreciate your offer) You're all such a fab bunch you know Becka - I really hope that it helps your friends, even if it just gives them some ammunition to go back to their GPs with. It has absolutely amazed me how many people have suffered with it but remained undiagnosed for such a long time to be suffering such horrendous pain in your head never mind the rest of the symptoms is awful but to then be treated as if you are imagining it is almost too much to contemplate Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted November 28, 2009 Share Posted November 28, 2009 Jue, I'm so pleased you have a diagnosis at last I also suffer with headaches & migraines, though nothing like as bad as yours..............some of those symptoms sound very familiar too, many of them are the "main" migraine nasties & I often feel what I term borderline migraine, as though a migraine has started by not really got going or I've missed the first few symptoms & have skipped to the "jubilee clip" effect at the end.........very bizarre, I shall have a closer look at the websites. Thank you for bring this to our attention, I hope the op is OK'd and you gain relief from it I've signed too BTW !!! Sha x Quote Link to comment Share on other sites More sharing options...
Joojoo Posted November 28, 2009 Author Share Posted November 28, 2009 Thanks Sha I hope you find it useful. I really sympathise with you cos regardless of the actual illness, headaches and migraines are horrible for anyone suffering with them Quote Link to comment Share on other sites More sharing options...
Guest Posted November 28, 2009 Share Posted November 28, 2009 I'm serious Jue, I can wash and iron your nighties and stuff and/or do any bits of shopping you need and come and visit you and eat your grapes You know where i am, just let me know xxxx Quote Link to comment Share on other sites More sharing options...
Joojoo Posted November 29, 2009 Author Share Posted November 29, 2009 Thanks hun I've PMd you xx Quote Link to comment Share on other sites More sharing options...
Janepie33 Posted November 29, 2009 Share Posted November 29, 2009 So glad you finally have a diagnosis. Have signed the petition. Good luck with the operation. X Quote Link to comment Share on other sites More sharing options...
Old Speckled Hen Posted November 30, 2009 Share Posted November 30, 2009 My goodness!! I've signed. Cavalier King Charles Spaniels get this too Quote Link to comment Share on other sites More sharing options...
Joojoo Posted December 2, 2009 Author Share Posted December 2, 2009 Well I've had some good news - I've been offered the opportunity of going on my local BBC Radio Station and discussing the Chiari as a way of raising awareness about it :D I'm over the moon at the offer. Will have to think about it as I'm not entirely convinced that I know enough about it at the mo to comment on it with any certainty but it would be a fantastic opportunity to raise awareness Can anyone who hasn't signed the petition please do so - just for little old me? pretty please? http://petitions.number10.gov.uk/ChiariAwareness/ Quote Link to comment Share on other sites More sharing options...
missuscluck Posted December 2, 2009 Share Posted December 2, 2009 Ju, I have just signed up. I have to admit I have never heard of it. Hope you are ok. Take care and hope to catch up with you on FB soon. Let us all know how you are getting on. Quote Link to comment Share on other sites More sharing options...
Joojoo Posted December 2, 2009 Author Share Posted December 2, 2009 Thanks Lynda I really appreciate it xx Quote Link to comment Share on other sites More sharing options...
bluekarin Posted December 2, 2009 Share Posted December 2, 2009 I have signed. Thats sounds horrendous what you've been going through, and I really hope the op helps you. xxx Quote Link to comment Share on other sites More sharing options...
Karen & co. Posted December 3, 2009 Share Posted December 3, 2009 Signed Jue hope you get a date for your op soon Karen x Quote Link to comment Share on other sites More sharing options...
Joojoo Posted December 3, 2009 Author Share Posted December 3, 2009 Thanks guys I've had an appointment through for my next MRI (spinal) - 21st December so that's another step in the right direction. x Quote Link to comment Share on other sites More sharing options...
Cooks Posted December 3, 2009 Share Posted December 3, 2009 done Quote Link to comment Share on other sites More sharing options...
Joojoo Posted December 3, 2009 Author Share Posted December 3, 2009 Thanks Cookie Quote Link to comment Share on other sites More sharing options...
Sam Palmer Posted December 4, 2009 Share Posted December 4, 2009 I've signed. I get migraines and know how debilitating they can be, so to get many of those other symptoms on top must be horrendous. Good luck. Quote Link to comment Share on other sites More sharing options...
