My tonsils only dip 5 mm into the boundry of the FM. They don’t seem to go past the FM. I also have Klippel-Feil Syndrome and cervical myelomalacia caused by contusion. Is this really a CM?
Hi, yes it is a Chiari, but you may have to have a few tries before getting an NS who knows enough about chiari to know that size of the herniation does not matter- if you are symptomatic you treatable. My herniation was around 5mm and it caused severe pain and nerve damage. Do your other conditions cause pain and chiari like symtoms? Some of us have had to rule out other causes for the pain, but eventually you will find an NS to help.
Jenn 
Hi Jenn,
I really don’t know what is causing what anymore. I had a bunch of back and neck pain before but the fatigue, concentration burn out, tingling face, headaches, sinus pressure and burning extremeties is fairly new.
My tonsils were only 5 mm as well but my GI specialist and NS classified it as Chiari and I had the decompression surgery. I’m having some recurring symptoms but the NL I saw said it doesn’t appear that I’ve herniated further but he will get my symptoms under control. It’s all about who you see… the first NL I saw said that Chiari was a farce and I was a compulsive liar and pretended to have this issue to get attention… 3 months later I had decompression surgery and all my symptoms disappeared. If you don’t like the answer you are given, always get a second opinion.
I say get yourself to a true Chiari specialist and him sift through it. I imagine the symptoms overlap and exacerbate each other.
NieNie, I'm just confused how a radiologist report would say something like low-lying tonsils, arachnoid cyst, prominent lateral ventricles indicative of diffuse central white matter volume loss and two neurologists completely ignore it. At least they acknowledged my Myelomalacia and said they would treat it, I have yet to be treated.
jcd, I am in Arizona and I clicked on the link above and selected Dr Niteel Andalkar suggested by Az_zipperhead. I hope he decides I'm worthy of consultation, at least, and gives me a call. If he doesn't believe surgery would be prudent, I hope he will treat me or at least recommend a neurologist who won't downplay my symptoms.
I understand that syrinx of the spine or posterior fossa is common place in CM. I have neither but I do have an arachnoid cyst. Could this cyst play the same role as these syrinxs?
Well, first off I am not entirely sure, but from what I think I understand, if there is any tumor or cyst in the brain/skull, that could actually cause the Chiari malfirmation. When the cyst or tumor grows it will displace other tissue, like the cerebellum tonsils. All of these diagnosis involve the brainstem and upper spinal cord, so it makes sence that symptoms are all very similar. Have you seen an NS about the cyst?
There is a lot of pressure waiting to get in with an NS. If they don’t agree to see you (doubt it) or you don’t like what you hear during the consultation you simply get another opinion- in fact that’s a good idea anyway. Most of us have been blown off or given bunk information by at least one NS. Keep researching and become an expert on your conditions so you can more easily spot a good NS when you’ve got one. You’ve got 3 conditions each worthy of an NS visit.
An idea, you can type the name of each condition into the search bar at the top of the discussions page and pull up past discussions about it.
Jenn
Yes, Beeba that is what the radiologist is referring to when he says myelomalacia felt to be from KF. Looks similar to syrinx but the outline isn’t symetrical. The radiologist also says he doesn’t think the herniated tonsils are from mass effect- so he doesn’t think the cyst is causing it- from what I think and my opinion is NOT a professional opinion.
“Cyst is just part of your anatomy?” Stupid. May not be causing Chiari but that needs a qualified NS to say. Brain surgeon is not specialty enough - you need a Chiari specialist to get this all worked out. Something else you need to have on your radar… Cranio cervical instability. I know that KF causes non-surgical fusions, but it’s the Hypermobility part of this that worries me with this condition. I have Ehlers Danlos hypermobility and just had my CRANIO cervical fusion. Knocking on wood right now, I think the fusion worked. I’m attaching a few links about cranio cervical instability, and although they regard EDS as the setting for the instability, I think that there are definite similarities between the two. KF people have abnormal movement and basilar invagination just like EDS people do.
Video format:
CSFinfo.org
Videos
Metroplitan area
Cranio cervical instability in the Chiari patient/EDS patient
Non video format:
http://www.ncbi.nlm.nih.gov/m/pubmed/12607030/
Jenn
Hey Jenn, thanks for taking down those pictures! I don't know where my brain is sometimes. I'll repost them when I get access to my desktop.
Hi Beeba, my symptoms are c-spine to l-spine pain, spasticity, muscles spasms from head to toe, numb feet, tingling finger/forearms, pressure headaches from neck over head into sinuses. I wake sometimes with a tingling face, burning arms and legs, and a really weird hd like vision. Sometimes as I'm.falling asleep I feel this achey feeling in my legs that keep me awake. I rub BenGay to alleviate my legs. My mental symptoms are trouble concentrating, a brain fog, bad memory and daytime sleepiness regardless of sleep hours. I would start.falling asleep at my desk at work everyday. Finally, depression.
I upload the pics to my photo album. I thought I was doing it to the discussion thread. Oops!