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219373 tn?1274921434

does chiari always show up on mri?

i have so many symptoms that seem to point to chiari, but my mri was apparently normal.  is it possible to have chiari but not be able to see it clearly on mri?
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Since this is an older thread the member you are addressing your question to  may no longer be an active member.....I will post the list of Drs for your state....keep in mind this list is not a referral nor an endorsement for those listed it is meant to be used to research Drs in your area.....see a few....if need be, go out of state to compare.....many of us need to go out of state to find a true Chiari specialist.

Your symptoms are typical for Chiari and you will want a Dr that will also rule out ALL related conditions as their symptoms are the same if not similar and it can be difficult to tell which symptoms are from which condition.
Helpful - 0
2 Comments
Is it possible to get a list for Michigan and Ohio? My neurologist says I have chosen based on the xray and ct scan from the er, but the MRI she ordered says no.
Hi and welcome to the Chiari forum.

It is indeed possible to get the lists we have compiled by the members here, know 1- the list may be out of date ( Drs retired) 2- the list is not a referral nor an endorsement for those listed.
This list is to be used as a tool to research Drs....the more you educate yourself the better you will be able to recognize the right Dr for you.....not all Drs are well informed or experienced with Chiari and their co-morbid conditions. Many Drs also do not recognize Chiari as a condition that can affect us....

As for the conflicting MRI's if they were done on different machines with different slices/angles it is very possible to get different results.....Chiari is the malformation of the skull, and the herniation is a result of that malformation....many Drs only look to the herniation as Chiari and while the symptoms and treatments  may be similar, it is not the same and are not DX the same. EXAMPLE; if you turn a pear upside down and slice into three sections....the outer two would be short, while the center appears longer....if a MRI is sectioned the same way, and the outer two sections looked at, it would appear to be no herniation and after some time a second MRI is done and they look to the center it would look like it grew all of a sudden....when it hasn't changed.....you need an experienced Dr that knows and studies Chiari to help you figure it all out.

Below are the names we have listed for the two states you requested...keep in mind these were compiled by the members here of Drs they have been to, treated by and liked....it does not make them true Chiari specialists, but it gives you a starting point to research Drs.
Again this list is not a referral nor an endorsement of those listed. If you have any questions please feel free to ask and we will help to the best of our ability.

MICHIGAN

Dr Lynn Hedeman
Great Lakes Neurosurgical Assoc.
414 Plymouth NE
Grand Rapids, MI 49505
(616)454-3465

Dr. Karin Muraszko
C.S. Motts Childrens Hospital
University of Michigan
Ann Arbor, Michigan

DR Richard Veyna
Head and Spine Institue of MI
West Bloomfield, MI


OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
(513)221-1100
Avatar universal
I need to find a chiari specialist  Doctor in NC.
My PCP and neurologist do not seem to worry about my symptoms. Beside the chronic headaches, I  have  insomnia  and poor memory / concentration. Neck pain and pain  between my shoulder blade is constant. I have   hands neuropathy and tingling that get worse when I am in   bed or  if I  am holding book and reading for more than 5 minutes. I  only can sleep 2 to 4 hours even on sleep aid  medication. My vision, speech and hearing   are affected .. I have a MRI saying  borderline chiari 1 with 5to 6mm .
Jill
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620923 tn?1452915648
COMMUNITY LEADER

  Chiari 0 is when the herniation is shorter then 5mm but is still Chiari in that the skull is malformed and the herniation is creating a CSF obstruction.

Helpful - 0
7201263 tn?1391585994
what is chiari zero?
Helpful - 0
Avatar universal
Yes...I had 2 mri's and the 1st one said no chiari malformation so my neuro-opthamologist ordered a lumbar punture. It is very dangerous I found out much later, for someone w/chiari to have one! My health and symptoms have been going downhill since then so he ordered another mri and the radiologist said borderline chiari malformation found. I went to a chiari specialist who is my neurosurgeon to find out it is not borderline but 8mm! If I didn't look at my films myself the neuroopth was going to order ANOTHER lumbar puncture. He bacame upset when I questioned him about the chiari and refused a spinal & sent me to my NS. Thank God. I have no medical background I just compared my films to those I've seen online.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Chiari like many other conditions does cycle, so symptoms can come and go.....sometimes a flare can last a  long time, or a short while....and a fall or a MVA can trigger a flare and the symptoms to increase,

Chiari has also been mis-dx'd as MS....I would ask this next Dr to do further testing to be sure of ur dx....I know a few that do have both chiari and MS.

U deff need to know if u have chiari and how it is affecting ur overall health.

  "selma"
Helpful - 0
Avatar universal
I am having a lot of the chiari symptoms, but not sure the mri evidence is there.  Because I was diagnosed with MS in 1984 and then was asymtomatic for 14 years I think doctors will just say my symptoms are MS related.  I never had RR MS and no enhancing lesions on any MRIs.  Just a slow progression that started in 1998 and picked up speed in 2009.My first symptom was postpartum optic neuritis as was my daughter's  2 years ago.  I know that CM1 sometimes can runs in families. Most recent symptoms are nausea and dizziness and trouble with fine motor skills and occasional pain in the cartilage of my right ear and occasional TMJ pain and headaches that start  in the back of my head and move to behind one of my eyes..  I have struggled with balance and walking for a while.  Have had calf muscle pain for years.  I am scheduled to see Dr. Daniel  Barrow at Emory April 20.  We'll see how it turns out.
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1314344 tn?1274843421
That has been my experience with radiologists - they all just seem to brush off every reading, thinking that no one will double check their work or know what they're looking at.  Everything that has been found and brought to my doctor's attention has been because of me looking at the images.
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1322693 tn?1308153896
I had an Mri, CT and a ton of blood work and ALL came back normal!

I went and got a copy of my Mri after finding this forum and found my herniation.

I was the one that brought it up to my neuro and she in turn asked the radiologist (that found nothing in the first place) to do an accuarate measurement.

I measured at 5mm.

Even though she now says I have Chiari she still does not feel that is what is causing my problems although she has no clue to what is.

Going to another neuro this coming Tuesday for a second opionion and hopefully some more information.

Mistakes happen..

Take your scans to someone else
I highly recommend it!!

JEN
Helpful - 0
570413 tn?1299532661
I agree.  It's all in the interpretation.  Plus, Dr. Michael Rosner in NC told us that things always look better on an MRI, than what they really are once you get in there during surgery.

So, I would not give up just because you've had a brain MRI be read as "normal".   Chiari Zero is probably what you have, and can only be diagnosed by a true specialist.

Blessings,

Rebecca
Helpful - 0
Avatar universal
Rachel,

It is very possible to have Chiari with a negative MRI. I do! I had surgery this past october and am now feeling a thousand times better, though I still struggle with my condition every day.

You need to see a Chiari specialist who deals in Minimal Herniation. I would suggest the Chiari Insitute in NY if you are East Coast or Dr. Seiff at the Western Regional Center for Brain and Spinal Surgery if you are West Coast. Dr. Seiff was my surgeon and he is amazing.

Good luck,

Ashleigh
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Avatar universal
I'm sorry to hear about the pain you're in. I just went through all of this and it was so frustrated having  5 different doctors tell me I had Chiari, but it wasn't a big deal. Always get a second opinion...it took me a year. My tonsils were at 11mm...and my back was eroded at me T6 and T7 due to the compression. Don't let them blow you off.

Good luck, and keep us updated!
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680984 tn?1241641032
Hi Rachel!  I have been having this exact same problem, whichi is why I am having so much trouble gettin a dx for Chiari!  The only glimmer I have ever had was I had one radiologist make a one sentence note "stage 1 malformation".  That was it.  No one else has EVER said "Oh look - your brain is hanging out! Weird!"  I TOTALLY sysmpathize with what you are going through.  I now have an appt with a Chiari spec. on Nov. 24, so I am really hoping he will see something.

Good luck to you in search.  I will keep you in my thoughts.

Joy
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555358 tn?1292532061
Rachel,

Make sure you have a Chiari Specialist! Check around on line and see if you can find otthers in your area. I seem to recall others on these boards being from Virginia or therabouts. The chiari institute is in New York, I believe, that might be worth the trip.

Get one of your doctors to prescribe as strong a pain pill as you can get. And try to not do to much, the more active you are (especially anything that strains you, lifting etc.) can cause the herniation to grow quickly and cause severe headaches.
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Avatar universal
My MRI showed I had low lying cerebral tonsils but was in the normal range. My NS said I had chiari and sent me to another NS for the surgery. She is being very cautious because the MRI says my brain is normal but my symptoms say differently. She sent me to a migraine specialist and she says I have CM as well and has referred me back to the NS. I haven't gone back to her yet so I don't have any other info as of what they are going to do next. The everyday pain *****!!!
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620923 tn?1452915648
COMMUNITY LEADER
Chiari being detected most times will depend on the radiologist....and the herniation...the amount that the tonsils hang below the foramen magnum.....chiari zero would not have the herniation but can have the symptoms....u need to make sure ur drs r chiari specialists....my chiari is 6 mm and one dr said I did not have it.....another dr said I do.....so some drs may not reconginize it.Find a specialist and ask for copies of all ur tests.....also besides the brain MRI did they do others...did they check for chiari related conditions? such as syringomyelia......

keep us posted.

Good luck
Godspeed
"selma"
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