Aa
Trying to find answers..
Hello everyone,
My name is Amanda (zomblvr) and I live in Ohio. For the last several years I have had issues with neck pain, back pain, migraines, numbness in limbs, ringing in ears, etc, etc. The last 3 years have been horrible, the migraines have affected how I live my life. Five out of seven days a week, I am in bed crying from the amount of pressure in my skull. I loved walking/hiking, biking, and kayaking. Now all I want to do is sleep and my eyes are so sensitive to the sun, I try to avoid going outside on bright days.
Last year, after 3 different bouts of torticollis/wry neck, my family physician suggested I see a bone/joint dr and a neurologist specializing in migraines. After 8 months and nothing working (chiropractic care was extremely painful as well as physical therapy), the bone doc sent me for an MRI (neck and thoracic spine). The neuro sent me for a brain MRI too, but his results came back fine. The thoracic came back showing some disc herniation, but the cervical spine MRI noted I have a mild cerebellar tonsillar ectopia. How did they miss that on my brain MRI yet the cervical spine spotted it?
Regardless, I have included some images to possibly get feedback from anyone who may have any suggestions/observations.
So far, I am being told some herniation is normal and not to worry (from the dr). I don't know what is normal and cannot even get an answer on size, which angers me. Is it smaller than a 5, larger that a 5? I am considering consulting a specialist, but am not sure.
Has anyone else been told some herniation is normal?
Thanks for letting me vent...
~Amanda (zomblvr)
My name is Amanda (zomblvr) and I live in Ohio. For the last several years I have had issues with neck pain, back pain, migraines, numbness in limbs, ringing in ears, etc, etc. The last 3 years have been horrible, the migraines have affected how I live my life. Five out of seven days a week, I am in bed crying from the amount of pressure in my skull. I loved walking/hiking, biking, and kayaking. Now all I want to do is sleep and my eyes are so sensitive to the sun, I try to avoid going outside on bright days.
Last year, after 3 different bouts of torticollis/wry neck, my family physician suggested I see a bone/joint dr and a neurologist specializing in migraines. After 8 months and nothing working (chiropractic care was extremely painful as well as physical therapy), the bone doc sent me for an MRI (neck and thoracic spine). The neuro sent me for a brain MRI too, but his results came back fine. The thoracic came back showing some disc herniation, but the cervical spine MRI noted I have a mild cerebellar tonsillar ectopia. How did they miss that on my brain MRI yet the cervical spine spotted it?
Regardless, I have included some images to possibly get feedback from anyone who may have any suggestions/observations.
So far, I am being told some herniation is normal and not to worry (from the dr). I don't know what is normal and cannot even get an answer on size, which angers me. Is it smaller than a 5, larger that a 5? I am considering consulting a specialist, but am not sure.
Has anyone else been told some herniation is normal?
Thanks for letting me vent...
~Amanda (zomblvr)
Thank you all for your responses.
I was told this week (by the dr that ordered the MRI) that what I have cannot be classified as chiari because it was only 3mm, and this cannot be causing my symptoms.
The last week or so, I have been nauseous and dizzy almost constantly. It is affecting me at work quite a bit (and I LOVE my job).
I have an appointment on the 1st at OSU migraine center, that is where they referred me for a second opinion. I am hoping they can give me further information on this and if I am lucky, I'll get a doc that has experience in chiari. ;)
- Amanda :)
I was told this week (by the dr that ordered the MRI) that what I have cannot be classified as chiari because it was only 3mm, and this cannot be causing my symptoms.
The last week or so, I have been nauseous and dizzy almost constantly. It is affecting me at work quite a bit (and I LOVE my job).
I have an appointment on the 1st at OSU migraine center, that is where they referred me for a second opinion. I am hoping they can give me further information on this and if I am lucky, I'll get a doc that has experience in chiari. ;)
- Amanda :)
Hi Amanda. One thing I've learned through all this is not to trust any doctor other than a very experienced chiari doctor when it comes to determining the reason for our symptoms when we have some herniation.
From looking at your mri it looks like your herniation might get slightly larger to the side like in the image all the way to the left. In the next image (middle image) the length looks a bit smaller. That was similar to mine and every radiologist would measure from the midline and it was only 3-4 mms so they said I didn't have chiari. Once I got to a specialist they noted my herniation grew to 8 mms as it wrapped around the brainstem.
My advice would be to see a specialist. It seems like you are suffering quite a bit and that they are typical chiari symptoms. Good luck, I hope you find some answers.
From looking at your mri it looks like your herniation might get slightly larger to the side like in the image all the way to the left. In the next image (middle image) the length looks a bit smaller. That was similar to mine and every radiologist would measure from the midline and it was only 3-4 mms so they said I didn't have chiari. Once I got to a specialist they noted my herniation grew to 8 mms as it wrapped around the brainstem.
My advice would be to see a specialist. It seems like you are suffering quite a bit and that they are typical chiari symptoms. Good luck, I hope you find some answers.
COMMUNITY LEADER
Hi Amber and welcome to the Chiari forum.
Let me start with Chiropractic adjustments with Chiari...DON'T...they can cause more issues then help.
And the above poster is quite correct in saying it is not the length of herniation that is important it is if they are creating a CSF obstruction or compressing nerves, and how it is affecting your over all health.
What I have seen in over 8 yrs on this forum is how some with very minimal herniation's having more severe symptoms then those with extremely large ones....we are all different as will be the symptoms and size of herniation's.....knowing what other related conditions you may have will help some to understand your symptoms and best course of treatment,
Being in Ohio there are a few Drs there you may want to research...let us know...and you should know you are not alone.
I'm sorry for all the pain you've been living through.
My understanding is that it doesn't matter how low the tonsils hang for you to have issues with Chiari. id suggest seeing a Chiari specialist. Some folks with Chiari end up having other related medical issues as well, so please make sure you educate yourself. (EDS, CSF leaks, cervical instability to name a few). This forum is an excellent place to ask questions and learn from other posts.
Where do you live?
My understanding is that it doesn't matter how low the tonsils hang for you to have issues with Chiari. id suggest seeing a Chiari specialist. Some folks with Chiari end up having other related medical issues as well, so please make sure you educate yourself. (EDS, CSF leaks, cervical instability to name a few). This forum is an excellent place to ask questions and learn from other posts.
Where do you live?
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