I am so glad i stumbled across this. I looked up my syptoms (symptoms) having suffered for a long time with a constant ear ache, when i added up all my syptoms (symptoms) 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 (symptoms) 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
* 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 (symptom) 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
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.
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 (symptoms) for years and had lots of different tests but my syptoms (symptoms) 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 (symptoms) 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
Hi, many of us with Chiari have been told similar things, it is an incidental finding, or the chiari would not cause those symptoms...but we all know better, we know how we feel, and there is no other dx to put the blame on....so we have to believe the Dr is just not well informed on how chiari affects us....
Once u get to a chiari specialist u will see a difference...more testing to see just how ur chiari is affecting u and ur over all health.
I hope u get all the info u need, if u need to keep asking questions : )
I have Hashimoto's & Chiari's and lot's of other issues but what a combo huh! my levels are fine and I have the same issues with the cold! I am always cold and live in LA (Lower Alabama) so it's not exactly cool here very often and I am always cold! I have them same issues with body parts going cold on me and freezing all the time! I am glad to know I am not alone in wondering what's going on but levels being fine doesn't make a difference for me!
Stormy is not very active right now... but I can tell u many of us have Hashimoto's as well...I do...I was on meds for almost 2 yrs for it, and post op from Chiari surgery my levels have been ok that I no longer have needed it.
As for the being cold, u might have a condition that is related EDS, and with that u could have Raynauds Effect....it does cause u to have cold hands and legs and feet...have u been tested for either?
I was dx'd years ago and my symptoms are all listed above and then some! problem being there are no dr.'s in my area that are specialists that deal with Chiari I also have a severe neck compression. I really appreciate your knd words and welcome! I will be posting more I see the Neuro tomorrow, unfortunately he is of the belief that the Chiari can't possibly be my problem! I have migraines (severe), Severe vertigo...and he asked me for a list of symptoms. Problem is when I gave them to him he handed them back to me and said that I couldn't possibly have all these problems fix it so I don't sound like a hypochondriac and bring it to my next appointment. He is one of the few around that even knows what cm even is! I am so frustrated so I am simply dealing with the headaches for now.
Many of us do not have a Chiari specialist near us and do have to travel, I did, I went out of state as the Drs here had no idea how to treat it....that was the best thing I could have done.....do look at our list and use it to research Drs...keep in mind they r names of Drs that other members went to and liked, not all may be true Chiari specialists...so do research them as the list is not a referral...u may find one closer to u then u think.
Hi...the list we have is for the states here, and does not even cover all of it, as the list is comprised of the members Drs names....
There is a list for the UK, it is the Ann Conroy Trust.....there is a link to that list in the Health Pages...I am not familiar with ne of the Drs on the list nor am I familiar with the org that made the list....
Thank you for the list, I researched this long ago! as my insurance won't cross state lines I can't go to most of these and it was disheartening to see a post from a Chiari sufferer on this site that lives in Mobile Cheerio767 wrote:Hi. I live in Mobile and was diagnosed in 2000 at 33. Their are no chiari specialists here so curious as to whom you saw. The one neurosurgeon at the *University hospital network does not treat it and said to come back when paralyzed.
Needless to say I wrote back b/c I was floored! I left the name of the one I found on here and hope to find out if they are able to see this Dr. and how they like him! It's crazy that we can't get the care we need because there are no docs around and insurance won't let you go where you need to!
I get a squiggly line in my left eye sometimes. Like a bad picture tube where the picture is going. it's in the upper left hand corner.
And the incontinence.
When jogging, I run into garbage cans, trees even people, as my spatial sense is off
noise and sensation when laying down that fluid is running in the back of my head
buzzing. sometimes as loud as a bee hive, sometimes barely audible
I am new here and haven't yet been formally diagnosed but after seeing my MRI results and reading up on Chiari I am pretty sure this is what is wrong with me. I have read just the first maybe 15 comments here and already SHOCKED. THIS IS SO ME! I just thought I was weird and didnt like going places or just always felt a little odd now and then or had that weird feeling b/c the doctors always give you that :-/ look when you tell them how you feel. But things are getting worse and my pain is hurting more and I am tired of the brush off! Time for me to start being a pain in their behinds!
I have the shortness of breath when I talk,
I "float" around the stores,
one side of my body will be cold while the other is warm *very odd feeling by the way,
sharp shooting pain in my head and neck when I cough hard, pronunciation problems,
memory loss (I have had to reread this little sentence just to see what I have wrote and not wrote LOL it gets bad),
I forget what I am saying in the middle of a sentence.
Daily headaches (which my neuro says is migraines and that is all he is treating me for)
Noise tends to echo? in my head
I get a chlorine up the nose feeling alot..has anyone else ever had this happen?
Mood swings like OMG CRAZY
Ok imma read some more and see If anything else rings a bell b/c I am drawing a blank now
Ok, here are a couple of things I have that I am not sure if it is just me or if it has something to do with what is going on.
I have MANY phobias that I used to not have,
my head hurts severly when I brush my hair
and I have long hair and sometimes it is like my hair weighs a ton and I dont have the strength to hold it up. I have often times just cut it all off and got it over with.
I have always enjoyed good health and even now I am physically fit but still, after I turned 45 it has been downhill since. My symptoms include:
pressure behind the eyes - feels like a migrane (migraine) that is coming on but doesnt. The worse part is I have somewhat blurry vision (only for reading, not distance),
much less energy,
wierd vision sensations - imagining a tiny light or speck (please note I recently had an eye exam and was told my eyes are very healthy),
decreased tolerance for noise,
much less energy,
Many thanks for putting your list of Chiari symptoms on this website . I have had many of the problems you have listed over the last ten years . It's great to find someone who has so much in common with me especially the bit about your hair hurting , my scalp just seems so sore . You mentioned your face pain and I wanted to ask was whether it radiates from your throat area [ adams apple ] ? My throat clicks when I swallow and I get the fullness in the ears . I am as yet undiagnosed with Chiari but I had a CAT scan which showed I had Cerebeller Eptopica ; I read somewhere that to show Cerebeller Eptopica you would normally need a MRI scan as it's not normally visable on a CAT scan . I am waiting for an MRI and having a steroid injection in both my shoulders as I am having trouble with them and my arms . Does anyone else get their hips click ?
Pressure in the head
Electric shocks [ can occur anywhere on body and makes you yelp ]
Buzzing in legs
palms of hands burning
Soles of feet buzzing
Fullness in ears
Shakes [ internal also ]
Grinding in neck
Dull neck pain
Clicking when swallowing
Painful neck glands
Anemia [ may be due to not eating red meat as chewing starts face pain ]
Hair folicles hurt
Numb patch on scalp but hurts to touch
Walking like I'm drunk
Back pain [ especially lower back ]
Head nodding [ especially when relaxed watching tv ]
Slow word recall [ especially nouns ]
Cant keep eyes still even when eyes are shut
Sweating on any form of physical activity
Weakness in arms
White dashing dots in front of eyes when open
Weird Hic - cup / Burps [ sucking in air with face contorted like being sick and then burping ]
Involuntary Finger movements [ jerking fingers when hand spread out with palm upwards ]
Shins heating up like sunburn
Involuntary toe movements [ can't keep feet still ]
Pain between shoulder blades
Allodynia [ when you feel pain from something that should not be painful at all, such as a very light touch ]
Muscular pain / cramp
Sensitivity to loud noise [ producing an extreme startled response ]
oh and I thought I'd throw in ' Depression '
But then who wouldn't have that with all I have going on ;)
Thank you for getting back to me so quickly . I don't think I have Ehlers-Danlos as my symptoms don't seem to match up . I do have a problem with my CSF as it seems there is too much in my head and this is causing my pressure headaches.
Could you explain what retroflexed odontoid is ?
It is not uncommon for us chiarians to have GI issues like GERD so ur hiccups and burps are something so many of us deal with too.
For EDS, I also felt like u do that I did not meet the criteria, but once eval-ed by the Drs I do have it so make sure u do get a Dr to review u for it,
A retroflexed Odontoid is the reversing of the position of the odontoid bone which helps hold up the skull....it has a natural curve to it just as the cervical and lumbar spine do....however, this is in a confined space and it is the same space that the cerebral tonsils herniate into making the space that much more crowded, so u may be told u have overcrowding.
To see how this affects not only the space but ur brain stem take the thumb and pointer finger of ur right hand and create a circle...with the first knuckles meeting.
Now take the pointer finger of the left hand and pointing toward u, slip it from the bottom up into the center of the circle....the finger should have a curve to it as it points toward u, and u will stop at the first knuckle resting on the top of ur other pointer finger...look at the space around this finger poking up thru here...there is some ....imagine a cerebral tonsil in there too....u have less space...well take the pointer finger and slowly turn it so it is no longer pointing at u, see how it closes up that space u had?
The turned finger is a retroflexed odontoid and this is how it affects u....BTW- when it turns it points toward the brain stem and also compresses it....
I hope u can understand that....if not let me know.
Thank you so much for explaining it .. you should have seen me doing it .. I was all fingers and thumbs ;)
So how long have you been suffering SelmaS ? Mine has been about ten years .. but I'm not sure if I have inherited mine from my mother as she had a brain scan due to her legs and feet having neuropathy .. she was told twice she might have a tumour but then twice they have said no she didn't . Then she was told she probably had MS but she dosn't have the symptoms of MS , more like Chiari really . Some of her symptoms are very similar to mine and she has some extra problems which are on the other lists that people on here have provided .The docs have done nothing about it . She is just left to deal with the pain . Not that there is much one can do about neuropathy ; however mine might be to do with years of domestic violence I encountered or perhaps a combination of the both . Well I hope all will be revealed when I have my MRI . Again many thanks for replying to me ... it makes me feel I am not alone x
CSF-filled tubular cyst ... this certainly sounds like what my mother was told she had . I wonder if she does have Chiari ???? We are both quite similar in build & looks etc so perhaps it is genetic in my case. She has pain and numbness in her feet and legs which is now starting in her hands . Mine is on my scalp and in my hands . Her head bobs far more than mine . We look like a pair of Russian dolls with our head bobbing when we watch tv . We both react badly to loud noise as well ... flaying out our arms like a baby when startled . The thing I hate the most is the face pain ; I did read somewhere that if you have face pain try sitting down and putting your head between your legs [ like you are told to do when you are fainting ] this certainly helped me but lets face it how long can one stay in this position . It does give a brief respite though .
I am in UK so I get what I get given here . I have been searching on the net for someone in my county but there is only one . I will see how things progress . SelmaS I am so sorry you have had this terrible disease for all of your life ... at least I can say I had a normal life up until 10 years ago . Glad that the surgery helped you , Im not sure what I would do if they offered me surgery here . Like you said you need someone well experienced with Chiari .
Finding the right doctor is rather difficult here and if they were treatingme they certainly would not take the time to look at my mother too . She has resigned herself to the fact that ' this is it ' and dosn't wish to persue any help as most of the doctors and specialists , especially a certain neurologist , mad her feel like she was going mad .
In the Health Pages we do have a list for the UK....the list is by the Ann Conroy Trust....I would suggest research the Drs on the list, but they are supposed to be Chiari specialists....I know nothing of them, so educate urself and visit a few and go with ur gut as u will know which is right for u.
I meant to get her an appointment as well....I know what she is saying as I feel my dad has it and he said exactly what ur mom said...why bother at my age this is it....ugh...it can help understand how it gets passed along....oh well....
Who won't go mad with the attitudes Drs have along with the bad bedside manor...ugh....they drive us there.
Here is my 'short' list (in addition to the common symptoms):
Droopy eyelid (left eye), sensitive to light and noise, ear pressure, lots of nasal congestion, dilated pupils (I mean really large pupils that do not react to light), pain… everywhere, periodic limb movement disorder, “shock” type feeling that occurs only in my brain (ok, so I haven’t told this symptom to anyone since telling the first doctor and he decided I probably had a mental condition – but maybe you all might ‘get it’)!
Sorry to reply so late, June was a crazy busy month for me and I have just caught up now!!
Yes, I get pain radiating from my Adam's apple, sometimes it is also super sensitive in the spots under my jaw near my ears.
I do get throat clicking from swallowing sometimes and I used to get it even when I turned my head. I can take my larynx and shift it back and forth with my hands. This one I contribute more to the EDS as it is a connective tissue disorder. However, I think this could be Chiari as well as it looses and weakens pretty much every area of your body. Now that I think of it, this is something that did get better after surgery.
Hips clicking is a big thing with me too, again, I thought maybe it was more connective as my hips are so loose but that has also improved somewhat after having the surgery. So I am pretty sure most of these things are a combination of both disorders. I remember before I knew what was wrong or had serious symptoms that I was mystified that when I would climb up stairs I would hear this clicking noise!! I always thought it was a zipper on my hoody jangling but them one day I noticed I wasn't wearing anything that could make that noise and then I realized it was coming from my hips!!
My list is sever headache coughing,bowel m,eye go crosseyed and eye pain sight got bad,neck,back,leg,hip pain,breathing sob, chronic broncitis,dead arm with no warning,left side body worse than right,swallowing an choking problem,barretts,fibro,if i stand in one place for couple min feels like feet r being attacked by red ants with burning pins an needels,cold from knees down to feet always,trouble sleeping,tired during day but wont sleep cuz night will b worse,short term memory bad,forget what saying mid convo,sometimes nausea,heartburn second i try to eat,no disire to eat,but im the heaviest iv ever been,heart palps,dizzy,cant feel body its hard to explain i can feel touch butits like its not connected scary,urine takes forever an get a tiny bit,repeat ,yself constantley,both hand will go cold an numb,mind u these are not everyday i have all the above. Its like a pot luck everyday,,and a horrible way to live i hope surgery will take some away. Oh and dont let me
forget..pain pain pain everywhere 24/7 thank you all for listening i dont tell family or friends this cuz they look at me like im nuts for having all these symptoms they dont get it and act like i havenothing wrong and just say have the surgery soon cuz they think this will solve everything and it will all go away even when i say i will still have chiari after surgery they dont get it thank all
brain fog, eye prob.twitching, balance prob., hand corrdination, searching for words, visual field loss glaucomana from ICP being too high, phsyical weakness, Shortness for breath with rapid pulse with low BP light minimial exertion..
I have very bad kneck pain back, pressure in my head and temples and behind my ears. I have vertigo. It hurts behind my eyes my eyes get very red. My heasd hurts and feels very weird everyday. My vision is funky I'm tired alot and my body feels week. Ringing in my ears..my feet and hands get tingly I have a 8mm herination is all this normal?
I'm constantly cold. Its winter in Indiana now and the cold makes it all worse and makes me constantly tense. Some other symptoms include:
pain in shoulders, neck, jaw and back of head
word recall problems
extremely cold all of the time
horrible lower abdomen pains
ringing/throbbing in ears
constant head pressure
tingling numbness in hands in feet and now sometimes face
dull arm pains throughout muscle
The other night I got out of bed to get a glass of water and almost fell to the ground mid step. I regained my footing and sat down for 20 minutes trying to get the dizziness to stop. I even ate fruit thinking it was low blood sugar or something.
One last thing.....my eyes constantly burn too and didn't even think it had anything to do with the chiari until I read from people on here.
hey im new to this conversation but finding it so helpfull to know all this is not in my head. i relate to so much of it , u think six stairs is bad i cant even make my bed without needing a nap HALFWAY through!.
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