[luvmy2grls]

Hiya,
I had a brain MRI/MRA done and a C-spine MRI done separate times for the same reasons.

Anyways, the c-spine mri didn't say much accept for "right posterior lateral disc protrusion extending into the entrance of the right lateral foramen" and it also says "Posterior Fossa and Brainstem, no Chiari malformation."

The Brain Mri says differently.. It says" There is a small, incidental Tornwaldt cyst involving the nasopharyngeal region. This is of no clinical significance. Very mild mucosal thickening in both maxillary and ethmoid sinuses.

The cerebellar tonsils are somewhat low lying, and there is a borderline Chiari 1 malformation.

IMPRESSION:
1. Intracranial contents are negative. borderline low-lying cerebeller tonsils.

2. Mild muscoal thickening in both ethmoid and maxillary sinuses.

So I was wondering how often are these taken seriously? Also, is it just difference in oppinions why the radiologist who read my c-spine said "no chiari" and the one who read the brain said "borderline chiari"? I mean the neurologist despite all of my symptoms has told me I am fine and suggested I do some physical therapy or something and follow up with my GP..

I went ahead and scheduled and appt with and ENT regarding the Tornwaldts cyst.

Here are the symptoms that I deal with daily...

Headaches (daily and migraine)
Tingling (hands,feet,and face)
twitching hands and now other muscles throughout my body
balance issues
muscle fatigue
calves ache and are sensitive to cold or air movement
feet hurt just after standing 15mins or even sometimes less
forearms and elbows hurt
acid reflux
constant sinus drainage
heat senstive
low back pain
neck pain
heavy painful periods
facial pain

These are just about half of them..

any help is appreciated!

thank you!

[pom4life]

Hello, by reading your post and by what your MRI's have said, you should mention to your doctor a basilar invagination. It is not very well known but is more common than one might think. I was diagnosed with a basilar invagination along with an Arnold Chiari 1 malformation at the age of 13. By your list of symptoms this could very well be a possiblity. Hope all goes well and you get some answers.

[chiarichic]

lovemy2girls,
I was diagnosed in 2003 with an 8-10 mm herniation by a neurologist who had little experience with Chiari Malformation. She second guessed my symptoms and said they were caused by "stress".....I responded with "Yes, I am under significant stress because I am not able to get the appropriate healthcare for an obviously severe health issue." She promptly began to write referrals for me. You have to educate yourself and be your own advocate. The diagnosis "borderline Chiari" really does not do justice to the real issue which is whether your CSF is flowing properly. You could have minimal herniation yet your spinal fluid could be blocked and causing your numbness, tingling and severe headaches. I can tell you with much certainty that most docs do not have the experience needed to treat a Chiari patient. Please find one who specializes in Chiari. And be sure to keep us all posted !! God Bless !!

[MikeNC]

Originally Posted by luvmy2grls

Hiya,
I had a brain MRI/MRA done and a C-spine MRI done separate times for the same reasons.

Anyways, the c-spine mri didn't say much accept for "right posterior lateral disc protrusion extending into the entrance of the right lateral foramen" and it also says "Posterior Fossa and Brainstem, no Chiari malformation."

The Brain Mri says differently.. It says" There is a small, incidental Tornwaldt cyst involving the nasopharyngeal region. This is of no clinical significance. Very mild mucosal thickening in both maxillary and ethmoid sinuses.

The cerebellar tonsils are somewhat low lying, and there is a borderline Chiari 1 malformation.

IMPRESSION:
1. Intracranial contents are negative. borderline low-lying cerebeller tonsils.

2. Mild muscoal thickening in both ethmoid and maxillary sinuses.

So I was wondering how often are these taken seriously?

From what you report, my experience over 8 years (as well as reading the WACMA site) and a solid 3 year quest to be taken seriously, I'd say not often at all. Many neurologists (over the age of about 45) have a 5mm threshold for diagnosis when it has been shown that the entire bony stricture of the brain (the cistern?) that holds the cerebellum on zero herniation patients can be too small for the patent and CSF flow is diminished. I have a 5mm and was told repeatedly that nothing was really wrong despite a surgical procedure and general anesthesia triggering a host of neurological symptoms with the chief one being a peripheral neuropathy. It is suspected I was on the cusp and the cracking back of my neck for another procedure forced my tonsils lower. Whiplash is to be avoided at all cost from now on by anyone close to a positive diagnosis. 5 neurologists were silent after saying it was anxiety most likely when I stated my golf game went from shooing around 75 to being unable to break 100 two weeks after the procedure. But they still wouldn't admit to a neurological deficit. In taking my films to Long island, NY, to The Chiari Institute I was informed that they were of insufficient quality to read properly and it was explained to me that not all MRI machines or the software is set to read all images in proper detail. There, after MRIs and a CSF flow study, it was found that I had an issue with flow but for various other reasons was not the best surgical candidate. So I am in discomfort most days in varying degrees.

If you went to a cut-happy neurosurgeon who operated for money and was under review constantly, he might crack your head open that week. I ended up at one of those first who told me I needed surgery right away. My neurologists knew his name and that he had lost his operating privileges at a nearby hospital. This is major surgery, although at times it is needed. Many variables go into the decision. There are no promises and primarily it is thought to have a shot at halting any progression. If you are newly diagnosed and confirmed as being symptomatic a good doctor, IMO, will want to see you in 6-12 months to see if there are any significant changes IF you really are symptomatic. The good news is that as was told to me, if I really need the procedure I will be asking for it, and I am not and have not.

Good luck