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.

[selmaS]

  Hi and welcome to the Chiari forum,

To test for CSF fluid you can do what they call the bullseye test...let the fluid drip onto a clean paper towel and let dry see if a bulls eye pattern is created.

Next, find a true Chiari specialist to help DX other possible related conditions and  see what is going on...to see what treatment is best for him.

Far too many Drs are not aware of what Chiari is....the older term Arnold Chiari is only used now for type 2 which is so evident it is DX'd at birth.....most of us do have type 1 which is just referred to as CM1.

Make sure you have copies of ALL the testing that has been done to date and going forward always request copies of the testing along with the reports....

It sounds like he may have an infection of some sort to have a high temp.....not knowing where  you live I have no idea what to suggest until you can get him to a specialist...but he needs care now....if your local ER is not helpful maybe look in your area for one that may be a larger facility that may be more aware of uncommon conditions......

[kenziechiari]

Hello, my name is Lisa and my son has just recentley been diagnosised with Arnolds Chiari....it has answered soo many questions and given me that ahha moment....he was diagnosised on his 20th birthday and all his life he has had so many unexplained difficulties thru his whole life....never getting a sure diagnosis of anything expcept depression and anxiety....he has recentley really detoriated....weight loss, seizures,letharic,and constant dripping of fluid of the nose of clear fluid when up and around for more than 30 minutes....he told me after being in the hospital a few days from the seizures that he felt as if he had fluid on one side of his head...then the dripping started and then it stopped dripping so bad and within 24 hours you could see fluid on one side of his face and it seemed to go down the neck and pool around the neck/chin area....within the next 24 hours he started running fever of 103.8...back to the er; we have had many trips to the er in the past couple weeks....each time they seem to act as if we are crazy...telling us that its not possible for him to feel fluid and that basically I guess my sister and I were crazy and that it isnt fluid its swollen lymph nodes....he has very bad teeth and they need extracted and so this last trip they decided was his whole problem....they pumped him full of fluids antibiotics even antiviral meds of some sort the fever broke....less than 12 hours home from hospital and he has went back to being weak,pale in color and running 103.8 temp again and this morning he has a rash over his chest and upper arms.....I am so frustrated and frankly scared for him....do you know if high fevers can be associated with the Chiari's...I read somewhere that the dripping of the nose was spinal fluid and that can end up resuting in infection....cant find where I read this at now....I'm sure this is probably one the most confusing lengthy comments you have read but at this point my brain is quite scrambled!!!!! I appreciate any info you may have

[SarahNew]

Thank you Selma! I'm going to look for a specialist now! I want her to have all the help and resources available. Thank you for taking the time to respond!

Sarah

[selmaS]

   Hi  and  welcome  to  the  Chiari forum.

Please  post  your  surgery  date  in the surgery  date  thread  so a  prayer  thread  can  be  posted  for  you......

Surgery  is not  done  to  relieve symptoms  but  to restore  CSF  flow....

Do  you  have  a CSF  obstruction,  a syrinx?  or  any  of  the related  conditions?  Keep  in  mind  these  related  conditions  can cause  many of  the  same  symptoms.,

  Know  you  are  not  alone  <3

[NattyTee]

After years of suffering and medications that were not helpful, I was diagnosed with Chiari in June this year. I have many symptoms, that make getting up in the morning a difficult task. Every morning I wake up with terrible tension headaches. I have numbness in my hands, feet, and face and have chills all day long. I work in hospital customer service and the hiccups I experience can be a nightmare when talking to patients. I have an 8 year old son, and I can't seem to find the energy to do much with him and that makes me feel like I'm a bad mother. I am scheduled for surgery on Jan. 6 2015, and I am hopeful that this will alleviate most if not all of my symptoms. At this point I am frustrated, no one understands what I deal with on a daily basis. If the surgery doesn't work, I don't know how I can continue working, prayerfully all goes well.

[selmaS]

Hi and welcome to the Chiari forum.
I tend to sit on my hands too, mostly when they are cold, but sometimes when I have no idea why.
Having balance issues can make us appear klutzy.
Many of us also have Ehlers-Danlos that could be the jaw pain.We also have several types of vision issues, could be floaters or something similar. Word recall and short term memory is not uncommon. Know you are not alone. Find a true Chiari specialist. Ask questions and we will do our best to help.