Can we have symptoms with no csf obstruction and good csf flow?

[lynnbrook177]

I was diagnosed at 48, five years ago. My herniation is 11-13mm. I have had approx five mri's since my diagnosis and they have not shown any changes in the herniation. All have shown good flow around the herniation which is triangular in shape.  I do have frequent neck pain though, along with pain that travels down my arms to my hands, and upper back pain. I would describe the pain as a dull ache.  I don't have balance issues or the typical Chiari headache from laughing etc. I do have loud tinnitus, strong ear fullness, mild dizziness, positional vertigo, cervical arthritis, and extreme fatigue with activity (most recently). My neck disks are quite narrow and one NS suggested that my neck could be giving me some problems. I don't have any other health issues (that I know of).  How likely is it to have Chiari symptoms with good flow.  I think this is a good question to understand. I appreciate your input, as always! Thank you!,

[dhrycik]

Chiari affects everyone differently. I had an almost complete blockage of csf and only had migraines. I think the scary thing about chiari is it follows no true pattern

[lynnbrook177]

Yes. What's scary (and depressing) is when Mri's show no problems with flow yet you still feel symptoms worsening, and no one believes how badly you feel.

[selmaS]

  Validation may not seem like a huge thing , but for those of us seeking answers for sooooo long it can be enuff to turn us into blubbering messes....but very thankful blubbering messes.

Do keep us posted on the outcome of your testing <3

[lynnbrook177]

Thanks Kerri,

As I mentioned to Selma, I'm feeling blessed that I now have a good doctor that might help me get some answers. I will see my NL on a month as well. Thanks for your input!!

[lynnbrook177]

Hi Selma,

I just had an appt with my new GP yesterday. I brought along my symptoms list as well as all the info you have provided re related conditions and things to check. He was very impressed and appreciated the info. -- polar opposite to the old guy staring at me like I was a menopausal mess. It is amazing how much better you can feel just by being listened to!!! He is being very thorough. He's sending me for blood work to check all thyroid levels, my cortisol levels and he's even checking to see if there is bacteria in my stomach to explain the gerd like pains I've been having in my throat and back. I'm also getting a cervical X-ray followed by another cervical MRI. Etc etc. He used to be a chiropractor too, so he'll be a good one to have a look at my cervical spine!! He took the list and faxed it to my files. I'm feeling a little blessed and confident that we may get to the bottom of this. I will not be surprised at all if my cortisol levels are low. I've been so stressed for the past five years about all of this. I can't thank you enough for all of the valuable info you provide all of us!!!

[selmaS]

  Hi as Kerri mentioned above there are many reason to have symptoms with good CSF flow...and it is not the only reason for your Drs to take a closer look when symptoms are present and you have Chiari....but so many related conditions and non related conditions can cause the same symptoms.

Outside of a brain MRI, cervical lMRI, CINE MRI, thoracic and lumbar spine MRI what testing was done?

Conditions to rule out non related - lymes, lupus,, MS

Related conditions to rule out- Syringomyelia, ICP, POTS, CCI, retroflexed odontoid,kinked brain stem,tethered cord, Ehlers-Danlos, sleep apnea....

Then we also need to have our blood levels checked for low vit.D, B12, and low magnesium and potassium levels....

So many Drs only look at the herniation and if it causes a CSF obstruction but that is one of the more common issues but not the only one that can cause us to suffer symptoms.

Do you have a true Chiari specialist helping you?

[KerriC1]

hi lynnbrook.
I think with chiari almost anything is possible. Csf flow, or lack thereof, causes a host of issues. But there other things that do as well. Kinked brainstem, overcrowding of the brain as well as other related conditions can cause symptoms. I'm not as infoaribe as Selma for sure, but that's my take on it! My balance was awful pre op and it's still very bad now. I have other things going on though so who knows.

Wishing you luck in getting a well informed dr that will guide you through this!