Craniocervical instability

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bd38
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Craniocervical instability

Hi, I am new to this forum and I have been diagnosed by motion x-rays as having craniocervical instability. I cannot get help for this problem to date and am in chronic pain. Can anyone provide me with any advice from their experience regarding a clinc (private or other) where they do testing to determine the source of the pain, etc. I think this would include either diagnostic testing as well as manual testing of the movement of the joints - so I know how to proceed with treatment. Thanks very much in advance for your advice. Kevin

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tonya42
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Welcome

Has anyone mentioned to you Chiari 1 malformation? Just wondering. It's a condition that you are born with and can cause headaches amonsgt other things. It can also produce no symptoms at all and is found by accident. You didn't mention what kind of pain you are having. Can you tell me about your pain?

bd38
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Tonya, I think they ruled

Tonya,

I think they ruled out the Chiari malformation by MRI a while ago. My pain used to be mostly in the occipital region extending into the back of my throat at times. Now I get pain also further down my neck in the C3-4 area I believe.

It used to be more of a burning pain, but very diffuse. Felt like it was burning into my eyes and chest even. Now I get more of the regular stabbing pain at times or pain that you feel with inflammation. Hard to describe it.

tonya42
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bd38

I'm still looking around about your diagnosis. Now knowing your symptoms helps. My MRI showed Chiari that's why I asked. I'm glad they ruled that out for you because to be honest it is scaring the living daylights out of me right now. I guess it's so rare there is very little information about it and right now I don't know where my symptoms are coming from. Either my ACDF or something caused by Chiari. But I am going to keep looking around here and another board that I read occasionally and see if I can find anyone that matches your symptoms. I'm sure someone around here will chime in though.

tonya42
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One more thing Ok 2 more

Are you seeing a Neurologist now? Or have you in the past?

Neck of Steel Cindy
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Welcome to SH Kevin

bd38 wrote:
Can anyone provide me with any advice from their experience regarding a clinc (private or other) where they do testing to determine the source of the pain, etc. Kevin

I would say to see a neurosurgeon or orthopedic spine surgeon (make sure he/she is fellowship trained in the spine). There are many tests they can order, and if you have true instability, the testing should show this. A good neurosurgeon will help you get to the bottom of whatever is causing your symptoms, and will be able to give you options for treating this. Even though it gets frustrating, keep pushing until you find someone who can help you. Treatment may be something as simple as injections for the occipital headaches.

I wish you the best.

Cindy

I wish you the best.

Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!

62207fusion (not verified)
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for Kevin re: Craniocervical Instability

Hello, I am new to this forum. I had craniocervical instability after an auto accident in which the airbag hit me. I suffered from severe chronic pain and neurological deficits.
After many Drs, neurologists and neurosurgeon consultations with no help,I finally found the Chiari Institute online. I contacted them and got an appointment. To make a long story short they found I had a fracture at C1, cranial settling and mild brain herniation (chiari). Their MRI and CT scan methods are much better and more detailed so they often find problems that other Drs miss. They did 2 surgeries in 2007 and saved my life because I was partially paralyzed before the surgery and now most of the feelings in my legs and arms are back.
The Chiari Institute is in New York. Here is the website for info: www.chiariinstitute.com
For now you really need to find a top notch neurologist and neurosurgeon team to help you. Are you wearing a hard collar? If not I would highly recommend you get fitted for one and wear it during the day when moving about. I wore one for 6 months and it really helped with the pain because the hard collar will support the weight of your head and take the stress off the base of your skull and your neck muscles. That is what causes the terrible pain when you have cranial instability. Sometimes they prescribe head traction a couple times a day to relieve the pain. Your neurologist can explain this to you.
Your Dr should have referred you to someone who can help you. If he won't then I recommend you find a new Dr who will help you. You really have to be assertive and demand to get help. That is what I had to do. It ended up saving my life because my neck was broke and if I hadn't spoken up I would now be either totally paralyzed or dead.
Best to you Kevin. God Bless,
Ginny

62207fusion (not verified)
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bd38 Kevin what happened?

Has anyone heard from bd38 Kevin? I was very concerned about him because I had the same severe occipital pain and the pressure in my throat.
Dr. Bolognese at the Chiari Institute explained to me the occipital pain is because the C1 is so deep in the skull. The pressure and pain in the throat is due to swelling and displacement of tissue, muscles etc.
I wonder if he was in any sort of accident. My C1 fracture was not found for 4 years!!!!! Can you believe it? I went Dr. to Dr. with little help. Some even told me to see a psychiatrist. I started with just bad headaches then after 4 years was partially paralyzed and having seizures daily.
I hope he calls the Chiari Institute. They saved my life.
I'll try to PM him.
Kevin-if you are reading this-I am praying for you!
Ginny

JKDE302
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Interesting...

Interesting...

squeekers
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Message for ginny

Hi Ginny just reading your post, i cant get over they missed the c1 fracture, had you had an mri before and they just could not see it, what type of scan picked up on the c1 fracture?

im in the same boat any info would be great
nadine

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