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......
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 *****!!!
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.
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.
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.
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.
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.
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.
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.
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.
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 .
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.
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