Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[Hayleyrose]

thank you for the help, I have joined a very good group on facebook and I  am doing some research myself before I go on to get my second opinion as unfortunatley they were no help and im not pussxy enough yet!

i am sure its chiari malformation i have had syptoms for years and had lots of different tests but my syptoms have got a hell of a lot worse recently and ive developed more too one of the the docs said it was very likley thats what it was one week and chnaged his mind the next week saying its not that which i am sure it is. he said we would look at my mri scan image from 2010 (which shows my brain is too low was told it wasnt a problem tho) and asked me to take a list of my syptoms we didnt look at my scan togther like he said and he didnt even touchthe list he asked me to make hes not even offered another idea to whats wrong with me or even set up any tests just gave me pain killers that have never worked over the years and said about putting me on happy pills.

also not many docs in england that know much about chiari but im hoping when i got private i will find one. i may even save and come to america :) thanks for help. any facts or things you can tell me would be good for my research

[selmaS]

  Hi and welcome to the Chiari forum.

Most of what u listed can be attributed to chiari or a chiari related issue.
There is more testing that should be done once u have been dx'd with Chiari.,..a CINE MRI to look for CSF obstruction and overcrowding.....MRI's of the thoracic and lumbar spine to look for disk issues, tethered cord,syrinx....other issues like POTS, ICP, ehlers-danlos,sleep apnea...

Do look at the list of chiari drs and use it to research the drs to find the right one for u.

[Hayleyrose]

I am so glad i stumbled across this. I looked up my syptoms having suffered for a long time with a constant ear ache, when i added up all my syptoms together and not just my ear pain (which is the worse one)  and diziness i found Chiari i went to my doctors with this because i was made aware in 2010 that my "brain was too low down in my skull" was assured that this was very common in girls of my age and nothing to worry about so i didnt. anyway after some physio symptoms persisted for a little while only to come back, when they first came back in 2011 the pain wasnt all that bad but since the end of may/beginning of june 2012 its become incressingly worse to the point that in the last 3 weeks i have collapsed six times. the doctor agreed that chiari was likley and booked a longer appointment with me where we could look at that first brain scan togther and we would look at a sypmtoms list he asked me to prepare so i was scared waiting for this appointment and when it finally came we never looked ta my scan he didnt touch my list and fobbed me off with diziness tablets that dont work, he arranged bloods but i think just to keep me happy

this then its got worse ad worse and is really getting me down pain killers have never worked and on my recent trip to the docs after my blood tests i was given pain killers ive told them time and time before make my diziness drosweyness and diorentation worse and dont work on the pain. now my docs on holiday and the rest at the surgery are more useless then him. now theres a note on the system for when he comes back to discuss anti depressants because ive been very emotional my last 2 visits...doh!

anyway i wanted to offer my list and see if anyone else thinks it could be chiari, im going for a second opinion and maybe saving money to go private the only problem is ive been off sick its so bad for the last 2 and a half weeks and im not back till 17.8.12 and ive lost 3 previous jobs with this problem.

I am 25 in november and have had this problem on and off (but mostly on) since i was 15 or 16

* ear pain and fullness mostly left year (dull constant all the time then sharp hot stabbing twinges every so often that have become more regular) never not in pain anymore and headaches with ear pain is a new thing in the last week or two they are usually seperate i would usually get a headache when my ear is not twinging as much
* head aches left temple and at the back of the head also left side near and on my mastoid, mastoid bone can be very painfull and lower down the head leading to the back of the neck
* neck and shoulder pain left side, this is worse when stressed out
* facial pain left side
* head feels like its swimming sometimes and shaky
* itchy/tickley face and very itchy nose when syptoms are bad not sure if this is the pills tho?
* brain fog so glad someone gave a name for that i was gonna say muggy head
* confusion
* word loss
* disorentation especially when in the supermarket it is defo the lights and the floor i also get very dizzy and weird eyes if i have to iron stripy tops especially black and white also shop signs with certain colours on top of one another this was put down to my dyslexia though
* weakness in left arm and hand/heaviness in left arm/pins and needles
* twitching/weird eye movements left eye/twitching right side upper lip gets very annoying as all of a sudden it will get faster and harder and people can see my face moving
* ocassionaly ear rinign.buzzing
* facial paralasis (only happened a few times)
* very dry mouth lips and throat, loose voice quite a lot
* dull ache in both legs (left worse) and lower back as far down as my bum (left side also worse)
* cramp in calfs and arches of feet left side worse used to happen more frequntly then it does now
* floaty feeling not the same as the diziness (shopping)
* fatigue tired a lot i dont get till sleep till very late and when i do try i dont sleep to well, i still get pain when i am asleep it is always there so im never fully switched off even with sleeping pills
* nausea and vomiting (vomiting not all the time but a lot when i do and for a few days at a time)
* dioreha more often they i should have
* unsteady with feet, sometimes they dont go where i want them to mostly if ive been stood up or walking a long time
* pain while chewing anying even something soft not all the time takes me by suprise
* depression, anxiety and feeling very angry (some days ill just be angry all day and snap at people but dont mean to ) :(
* hot flushes and sweats out of no where and i am way too young for the change
* heart raching (new syptom last week or so)
* pain worse when i cough, sneeze or poo (sorry) also when i cough sneeze or wretch i also get stabbing pain in my left eye and it once felt like it was going to pop out
* collapsing/fainting/black outs
* shaking feeling from insdie the body
* hate crowded places/lots of people talking (makes me feel dizzy and head feel weird also hurts my ear) same with loud noises
* irregular periods not had one since feb 2012
* feel over sensitive to pain also feel over sensative to medications
* selected insomnia (i dont choose i will just not sleep or up to 5 days for no reason)


thats it really dont think ive forgotten anything please tell me if you think its chiari because i am damn sure it is its doing my head in i feel so let down by my doctors i dont know what else to do and its ruining my job, social life i see hardly anyone its basically ruining my life please help

x

[JESSICAH1230]

Its nice to see this post. Besides the common symptoms there was the wierd feeling in the legs. Like air bubbles or something. There is also the ocean noise in the ears. The eye twitching is soooo annoying!!! So is tge ringing in the ears, flashees or worms (squiggels) in the vision.

[Kwstar1]

omg get this too shanmomof3, also weird that I get a lot of the weird symptoms described but never really knew that it wasn't "normal" so never really investigated it until now when things are getting worse.

[Kwstar1]

when I lay down apparently my eyes "roll" into the back of my head, I have no idea they are doing this but this is what my pt has noticed, also another weird think when my pt pushes on my neck I get floaties in my vision. Weird Idk if anybody else gets these things?