Just Diagnosed

Hi,

I have a bit of a complicated medical hx. i.e., multiple autoimmune disease/disorders.  Always had migraines..pain in neck..shoulder, jaw, etc.  Past few years, memory problems, coordination/balance etc. I can't always address every pain..because they always just relate it to my RA.  

2 Weeks ago had Vertigo..I was stumbling and never had it before..a CT showed the CM followed by my MRI which has not yet been viewed by a Neurosurgeon.  

I have 3mm on Left side only.  Is this common?  Is this good?  Bad?  Adding to the balance issue?
Also says Mild Convexity Virchow Robin space prominence, I'm trying to understand that one, concerning is the fact that is a factor in dx. MS.  

Can anyone help??  I see the first Neurosurgeon this coming Friday...I live in Boston.  I'm seeing Dr. Heilman at Tufts University, Dr. David at Lahey..and waiting for BWH/MGH to get back to me.

Thanks,
Kadi

[selmaS]

Hi and welcome to the Chiari forum.

Many of ur issues can be associated to and related to chiari. There are some that can have both Chiari and MS...so, I am sure the drs will look to rule out both.

Dr Heilman has a very good rep in chiari circles...I have heard many good things about him.I do not know about the other dr, but see both and see who u r most comfortable with....we need to like and trust our dr.

As far as the tonsil herniation being bilateral....only one side is not uncommon...my left was 6mm and my right was 4mm...

It is possible to have chiari related symptoms with out ne herniation..that is chiari 0...it is a CSF blockage and overcrowding that the drs will look at via  a CINE MRI.

I have seen the term mild convex virchow robin space regarding to hydrocephalus....so it may indicate a CSF flow issue......again I am not sure on this one...do not see that too often.

All I can say is do not stress over the terms u see...wait to see what the dr feels and u feel is best for u.

Glad to have u join our family here :)...sorry for the reasons u had to seek us out.

"selma"

[Kadi223]

Hi Selma,

Thanks so much for responding.  I'm glad I chose Dr. Heilman, it seems I'll be in good hands! I'll let you know what they have to say, but at least I may be able to get some medication to help with the symptoms.  

Karen

[selmaS]

No worries Karen....I am sure u r in good hands and I look forward to updates : )

"selma"

[omslp]

Hi
I was just wondering how was your visit with Dr Heilman...I have an appointment in a couple of weeks..
Olinda

[n40066]

hi kadi!
welcome to our little family!  my herniation was 9.6 on the right and about a 4 or 5 (can't remember) on the left.  it's actually rather unusual to have the herniation be equal bilaterally from everyone i've spoken with!  lol!  so don't worry about that part, cuz you're "normal" in that respect!  lol!  like selma said, this is one place where size doesn't always count.  it's the overcrowding and blockage of csf that matters the most and causes the majority of our problems!

you're really lucky to be starting off with a specialist that is known in chiari circles and has a great reputation!  you have saved yourself mountains of stress!!!  i have ra too, and went thru 8 years of pain and graduating symptoms before and "incidental" finding of cm was made on an mri.  but i had to fight to even get the ra dx because my symptoms for that weren't textbook either....they kept insisting it was lupus.  since you are seeing such a good dr, i have every confidence you will have answers very soon.  but if you, for some reason, still have doubts, don't hesitate to seek a second opinion.  you are, after all, your best advocate!
good luck and best wishes!!
elizabeth

[n40066]

rotf!!!!  i just noticed the date of the original post!  hahahahaha!  guess i shouldn't post during the weeeee hours of the morning, huh guy?  lol!