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.

[kami37]

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

[*Stormy*]

Hello,

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!!

I hope that answered your questions, take care!

Stormy

[MelissaLynn1]

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’)!

[KeyRee]

Will do thanks SelmaS :)

[selmaS]

  Hi Bro.....wow, thanks for letting us know....strange how Chiari continues to affect us even with other medical issues/treatments.

[ChiariWolf]

Ok, an unlisted symptom for some

With FolFox chemo therapy the whole back side of my head and neck at the surgery site is completely numb. I guess that's not a normal chemo symptom so it's being attributed to ACM