Is any one still active here ???
Bumping up this for current members to see
Hi and welcome to the Chiari forum.
IS this Dr a true Chiari specialist and did you have ALL related conditions ruled out? It is very important to have that done as it can be a related condition that can affect the surgical outcome and possible symptoms that linger.
I had surgery in May '09 and it was well worth it for me. I did see a true Chiari specialist who explained why they had to do certain things because of the related conditions I have....I would do it all again.
You have to choose what is best for you, but do get more testing as this surgery is not done to remove symptoms but help prevent other issues from developing, which could lead to perm nerve damage.
This all happens to me when my cortisol (stress hormone) is up (also borderline diabetic) and when I eat too much sugar or white bread (carbs) etc... then the hormones go all over the place and I get all of the symptoms you listed above and more. It gets to the point that I wake up with nausea and dizziness. I have come to realize the dizziness is just that I am seeing small squiggly lines going across my eyes (I can see them if I look at a blank wall and they are in fact on my eye as they move with it when I try to look at them - the doctor called them tracers). If I eat very clean for 3 or 4 days (no sugar or refined carbs), they all go away. I did not understand any of this until my doctor told me I might be perimenopausal. Hormones mess with a lot! Just food for thought ;)
BUMPING UP
Please do not add more symptoms to this list if they are already posted...it is meant for us to refer to to see that we do indeed share similar symptoms and issues...thanks.
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......
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
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
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
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.
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.
My 4 yr old daughter was just recently diagnosed with Arnold Chiari Malformation. We had an MRI done for a possible neurofibromatosis diagnosis and found it. I was just wondering if these symptoms sound familiar.
*she says her legs are "busy" and she will just stand and not move them
*she says her eyes are "sparkling" which I have no idea what that means. Maybe they feel fuzzy.
*i feel like she might have a learning disorder because she has a hard time pronouncing words and remembering things are gets opposites and colors mixed up.
*when she is in the car she sits on her hands until they are numb. I don't know why she does that
* she has a lot of energy and falls down a lot. The neurologist just said she's klutzy but she falls A LOT.
* today she is complaining of jaw pain.
Any help would be great! I don't know how to make her feel better, which is frustrating for a mom!
Hi and welcome to the Chiari forum.
Ah yes, validation with a DX is such a relief and we all understand that feeling for sure.
Chiari is not easy to DX since we can present with a multitude of symptoms that come and go ...Chiari symptoms cycle so it is possible to feel great for long periods and then have a flare....when we go to the Dr we and they do not connect all the symptoms with having one root cause, so we go round and round dealing with them individually which does not render relief.....
With a Chiari DX, now you need to educate yourself on it and ALL related conditions and research Chiari specialists to find the right one for you,
Know you are not alone and we will help answer your questions the best we can,
I was just recently diagnosed with chiari I malformation. I was actually kinda happy when I got diagnosed because I no longer feel crazy. For the past 7 years I have had multiple head scans and have been to multiple doctors and was always told it was just normal migraines and anxiety. The symptoms I have are odd headaches ranging from burning pressure in the back of my head to electric shocks through my brain that make me jump. I hAve Chronic neck and shoulder pain where I hAve to use a heating pad or have my husband rub my neck and shoulders everyday.I suffer from terrible dizziness that makes me feel like I'm walking on a boat and I experience falling spells where it feels like I'm dropping through the floor repeatedly. I also have numbness and pain that shoots up and down the back of my upper arms and a cold burning sensation on the bottom of my feet. I saw someone say on here that they do a weird hiccup thing and then burp and I do that exact same thing!! I have acid reflux and get trapped air in my chest constantly. I'm not sure if that due to trouble swallowing. I also have heart palpitations that I take meds for. I have pain and fullness in my ears that I thought was from my Taj but it turns out it can be from this too. Now I don't experience all of these symptoms everyday but they do happen frequently.
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!.
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:
Headaches
pain in shoulders, neck, jaw and back of head
word recall problems
extremely cold all of the time
horrible lower abdomen pains
dizziness
ringing/throbbing in ears
constant head pressure
tingling numbness in hands in feet and now sometimes face
constant fatigue
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.
Also sometimes I just feel like I could pass out
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?
Here here sounds like the last 8 years of my life....
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..
When i cough i get a chlorine tast in my mouth very strange