Chiari Malformation Community
Neck/Shoulder/Spine pain
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Neck/Shoulder/Spine pain

I'm still unsure as to whether or not I have chiari malformation, but have been having pretty bad neck stiffness with the pain now moving down my spine to between/just below my shoulders (the pain between my shoulders is a sharp pain whereas my neck pain is dull). Has anyone with chiari experienced symptoms like this? I'm currently waiting on my doctor to schedule me a cine MRI scan. I've been told that this is the only true way to determine if the CSF Flow is normal or constricted. Thanks in advance to all who respond.
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620923_tn?1416285879

  Hi, yes these can be symptoms of Chiari.....does ur brain MRI and report show nething? I do not understand u not knowing if u have Chiari or not, but u r having a CINE MRI to see if u have obstructed CSF flow....u would only have a CINE at this point if u do have Chiari, but u need to find out if u have restricted flow.

U may also have a number of related conditions that can cause many of the same symptoms...so do get tested for them as well,
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Avatar_m_tn
I had headaches/neck stiffness/nausea back in January/February and had an MRI with the radiologist pointing out a chiari malformation of less than 5mm. Neurosurgeon told me that there was no way that I had chiari, so I started seeing a plethora of different doctors all having their own idea as to what caused my symptoms, all of which ended up being wrong after running tests to check their ideas. The only thing that has yet to be tested for is chiari via the cine MRI scan. I'm wondering if the neurosurgeon I went to just didn't have much experience with chiari. He was only focusing on the size of the herniation, but I've found where even people with small herniations such as mine can still have chiari symptoms. So I'm wanting to have the Cine MRI done to check and see whether the neurosurgeon was correct. If it comes back negative for chiari then I have absolutely no idea what is causing all of this. My current symptoms are headaches and the pain down my spine. No nausea. My headaches aren't severe like they were back in February. It's as if I have similar yet different symptoms this time around.
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620923_tn?1416285879

  The thing that bothers me is these Drs r looking to the herniation to classify it as Chiari, Chiari is not the herniation but the malformation of the skull.

So if u have Chiari it does not matter how long the herniation is, but if there is an obstruction,. U also will want to look for a syrinx in all areas of the spine, cervical, thoracic and lumbar...then for over crowding, ICP, POTS, and ehlers-danlos.

A CINE is not used to determine if u have Chiari it is used to see if ur CSF flow has a restriction to it or if it pulsates.

Chiari symptoms can cycle so for the symptoms to have lessened is common......and to develop new symptoms can also happen .

Find a true Chiari specialist this is key to getting the proper care.
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Avatar_m_tn
So what would you advice me to do next? I have a neurosurgeon in mind if this ends up being chiari, but he's gonna need to look at some sort of scan to know for sure right? I want to have all of the scan done before going and seeing him since it's a bit of a drive and I don't want to pay for an appointment for him to just say "get a scan and come see me again and we'll talk".
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620923_tn?1416285879

  Do u have copies of the the other MRI? If not, request a copy from the facitlity that did the other study along with the report. If it is more then 6 months old the NS may have u repeat the MRI neway. When u go for the CINE request a copy on disk and the report for urself....Always get copies of ALL testing.

The Drs should also be testing u for ALL the related conditions too.
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Avatar_m_tn
I do have a copy of my MRI. I also had a CT scan done, both of which I have copies of (the CT scan was because the drs thought I had a blocked sinus cavity). I have yet to have any type of scan of my spine though, just brain.
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620923_tn?1416285879

  That is good...if u can make copies so u have back ups and it is good to have on hand for when u go to another Dr for a different opinion.

May I ask what area u live in?
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Avatar_m_tn
I live in College Station, TX but grew up near the Dallas/Ft. Worth area. I am going to see Dr. Thomas Ellis in Ft. Worth for a second opinion regarding my possible chiari malformation. My neck stiffness has gotten slightly better these past few days. Whatever this is seems to occur is episodes each time
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620923_tn?1416285879


  Chiari symptoms do cycle....so I hope u r in a down cycle and will feel good for a while.....relax and reduce as much stress as u can as that can trigger a flare up.

Keep us posted on how this Dr visit goes.
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Avatar_m_tn
I finally have an appointment made with Dr. Ellis in Ft Worth on July 30. Headaches aren't occurring this past month but constant neck stiffness is definitely happening. Nothing debilitating, but enough to where it's painful having to turn my head or look up/down at something. I had X-Rays done on my neck to see if there was anything fractured/broken but all of my results came back perfectly healthy. I haven't had an MRI done of my neck (only of my head when I had my MRI back in February) so I guess I can't "officially" rule out something like a herniated disk or something along those lines. So for now I just gotta wait until I see that dr at the end of the month.
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620923_tn?1416285879

  Well I also have a herniatied disk and  I do not get the stiff neck or other issues I had prior to my surgery.....so for me my disk is not the cause of all those issues I had.

Good luck.
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