Head bobbing

[Abbydabby36]

Has anyone else's head just started "bobbing"?...When I try to hold my head upright it starts like this nodding type movement.  Thanks!

[Abbydabby36]

The radiologist saw the original Chiari on the first MRI...The subsquent MRIS read by the same group of radiologists are showing that it has gotten worse (longer herniation anyway).  My neurosugeon disagrees with them (although he agreed with the original diagnosis enough to recommend surgery right away...).  Sorry to hear about your NS...I'm in NC...Going to Duke...There's a list of Chiari specialists on the forum here...They're listed by state...I hope you can find someone there!!!!

[Abbydabby36]

My head stopped bobbing after a day or two...Been OK since...How did you test yourself?  

[MelissaF916]

I was reading your comments and found them interesting! I too had a radiologist miss my Chiari on my first MRI!! I knew something wasn't right and insisted on another one YEARS later and that radiologist saw it right away!! I['m in Va-who do you see in MD b/c I 'm currently looking for a new neurologist as mine passed away:(

[sanukilady]

If you have chiari and Ehlers-Danlos, a fusion is needed to help with that bobbing.  My head is crushing my well everything between it and my chest.  

I just tested myself.  Omigosh, I bob like a bobblehead!

Chiari & SM Foundation : Chiari w/Fusion http://www.csfinfo.org/node/180

[Abbydabby36]

I know...you're absolutely right...the stories go on and on!!!  Sounds like you've found a pretty good DR...Who is he and where in Maryland?...I think I'd stick with him!!!  Yes, we are in NC...We live in Pinehurst (the golf capital of the world)...it's about 70 miles south of Raleigh.  Where are you in SC?  How'd you find your Dr. in Maryland?  Happy New Year!!!!!!!!!!

[AJ29349]

Hi,
I went to Duke in September of this year.  They wanted to do surgery and said I may even need disc surgery after the Chiari surgery.  However, they didn't recognize the Ehlers Danlos and didn't go into specifics like the NS I am seeing in Maryland.  (I have also been to MUSC and Emory).  No one had x-rayed or performed a CT on my neck area and how it sits on my spine until I went to the doctor in Maryland.  And, I had 9 MRIs prior to my visit to Maryland.  Also, my NS in Maryland said the radiologist had read my herniation incorrectly that instead of 8mm, it is an 11mm herniation.  These stories go on and on.  My radiologist at our local hospital here in town, missed my Chiari on the first MRI and I had an extensive workup for MS.  No one can understand how he missed it and it delayed my Chiari diagnosis for six months!.  Good luck.  Do you live in NC?  I am in SC in the Upstate.  Good luck

[mrspea]

This is interesting because I can recall back to when I was in 12th grade, my friend was sitting behind me in class and asked me why my head moves so much. I told her I had no idea what she's talking about because I couldn't feel a thing. Little did I know! Currently, I can feel a slight movement, or unsteadiness within my head.

[Abbydabby36]

That is really interesting!!!  I had 2 surgeries late last year...had to have a 2nd one because of a major CSF leak.  I have not felt good at all since my surgery...Actually felt worse...headaches returned for a while...(actually they were the ONLY symptom I had prior to my surgeries!)...Now I have worse pressure and pain at the base of my skull, numbness in hands and feet, and considerable loss of balance.  Bobble head is a perfect (but not funny :( ) analogy!!!!  I'm going for a 2nd opinion at DUKE on Monday.  I didn't expect to be "perfect" after the surgery...but not this much WORSE.  I currently have a discrepancy between my NS and the radiologist frim DUKE (Who read my most recent MRI)...NS says nothing is wrong or has changed...Radiologist says in her report that I now have a 17.8 mm extension (prior to surgery it was 11 mm).  NS says she is incorrect in her report.  Who to believe?  That's why I'm headed to DUKE...Hopefully get an accurate answer!  I just can't imagine feeling so bad if there's not something wrong!  How about you???  Surgery?  How did they diagnose Ehlers Danlos for you?  Happy New Year!!!

[AJ29349]

I was told by my NS that my head is unstable as it sits on my spine.  I had not been told that before.  I think it is another symptom or side effect from Ehlers Danlos Syndrome along with my Chiari.  But, it was referred to as a bobble head in joking.  Where are you in your Chiari journey?  Have you had surgery?  

[thieb9]

Thats what I thought too.. It is the strangest feeling

[Abbydabby36]

It is weird...Feels like Parkinson's or something.  Eeeek!