I have been diagnosed with Chiari last month, and am full of questions!! My symptoms included very random spouts of facial/hand/leg tingling/numbness, muscle twitching ( not violently, just small flutters you can see under the skin), blurry vision, numb tongue and confusion. This comes and goes about every few months or so. And has been going on for about 2-3 yrs. An MRI ruled out MS but found Chairi and a herniation of 5mm. My DR feels this isnt significant enough for all my symptoms because I do not get many headaches, just random sharp pains & pressure. Also he said the MRI did not show a build up of fluids. After researching online I have found that there ARE Chiari(ers) that don't necessarily get the headaches. So... could my Chiari not be serious enough for surgery since at this point symptoms do tend to come and go, no fluid build up? I'm terrified of surgery, and am wondering? Is Chiari in itself deadly? Can I die from this? Or is other health complications mostly what ends a Chairi patients life? What are the odds of being disabled? I just dont know what to expect? If anything.
Many of us have the same symptoms as you do. They are Chiari symptoms. Not everyone gets headaches and sometimes symptoms change and you may get headaches and other symptoms overtime. Some doctors take a watch and wait stradegy if the symptoms aren't interfering with your life too much. It's not deadly. Some people's symptoms never get that bad. Sometimes a trama like a head ingury or car accident with whiplash can make people worse. Everyone is different.
Jessie,
I’ve experienced your same symptoms and now more, for over 5 years. It used to be in bursts…stretches of bad days followed by stretches of good. Now I’m to the point where its more or less all bad days. My PCP’s and NL have ignored me for all this time and it took an MRI looking for MS to find the 5mm herniation. They still said its not causing your symptoms but I knew the moment I looked it up and read the list; it was almost word for word what I had been describing to them over and over again. In my researching so far it sounds like some people never progress to the point of surgery and are able to regulate with medication, it just depends on how debilitating your symptoms are. I’m finally seeing a NS on friday, so hopefully I’ll have some real answers! Good luck to you…find a good NS and NL who know Chiari and can help you through this journey.
Hello Jessie, I had surgery May 2011 and I had a syrinx and blockage of CSF but with NO headaches. I had numbness, sharp pains, and burning in my arm and hands (left) after surgery this is when my headaches started and are still here so. Maybe a second opinion would be good.
This DR was my 2nd opinion, and he did say that there was no evidence of a syrinx or CSF blockage at this time. It still worries me but I am a hypochondriac at LARGE! LOL I do feel that I need to just play the wait and see at this time unless symptoms get worse, I just hate having to go from Dr to Dr. When i go for my follow up Aug.23rd I'm going to politely print out some information I've found online and show him that a great number of Chiarian's don't have headaches. I don't want to have to go through other numerous testing for some time of "nerve" condition if in fact it is the Chiari which is already FOUND causing the symptoms! It's so frustrating!
my herniation was 5mm. I didn't have the headache's as described. Mine were neck and up the back of my head pain. my symptoms increased over time, and were aggravated by heavy lifting. Avoid lifting over the head. there is a list of chiari do and don'ts. Google and find it. I can't remember where I found it. Try to avoid surgery. symptoms will wax and wane. sometimes weather, stress or again heavy lifting will make symptoms worse. I'm 4 1/2 months post-op. I had a laminoplasty done at the same time, so its been a long recovery.