No Chiari Headaches

I have been diagnosed with Chiari Type 1 accompanied by a large syrinx. I was shocked, to say the least, by the diagnosis. I had been experiencing pain in my shoulder blade region (sometimes stabbing, other times just a continuous ache), after a while I started with pains in my right arm, which lead to numbness. Over four months of visiting Physios and Chiropractors, XRays and a CT Scans (which gave no relief and revealed nothing), I was referred for an MRI, which led to my diagnosis. I have already seen my neurosurgeon and surgery has been scheduled for the 9 March. What I am asking is, if anyone else has been diagnosed with Chiari and has had these symptoms, without the dreaded headaches that I have read a lot of Chiari patients suffer from? Thanks, Bons.

hi Bons,

First off, congrats on the MRI findings! :) I mean that totally sucks but you found the problem and now you can fix it :)

Headaches are very common but not everybody has them. Where is your syrinx? What type of surgery will they be doing?

Are you confident in this neurosurgeon, like has he/she operated on many Chiari patients?

A "Large" syrinx is really a big deal so I'm glad you were able to get surgery scheduled so soon. Take it easy until then!

PS: the above questions are super important!

Hi Bill,

I am quoting from the medical report

"There is a large cervical cord syrinx which expands the cervical spinal cords and extends inferiorly to approximately T10 level".

When I saw the surgeon, I asked him when last he had performed this operation. Coincidentally, he had operated on a patient that week and the patient was still in the hospital. He called down to ward and asked her if I would be able to come and see her. My husband and I spoke to her at length and she was in great spirits and looked great after such a big operation.

I have another MRI with contrast scheduled for this Friday (2nd) and the operation scheduled for the 9th.

Thanks for your reply and concern,



I do have the headaches, but I am also a classic migraine sufferer on top of the Chiari. But I do suffer from chronic, debilitating muscle spasms across my shoulders. Sometimes, they restrict me from turning my head or lifting my arms overhead. I deal with weakness and numbness in both arms but my cervical spinal canal is only half the size of what it should be.

Good Luck tomorrow with the MRI. And I will keep you in my prayers during your surgery. Hopefully, all will go smoothly and without incident. <3


Congrats! It is a relief to finally know what is happening to your body and that it can be treated!
I had tons of symptoms including the pulsating headaches: nausea, dizziness, faintness, weight loss, tingling/numbness in my limbs,etc.
It’s a very troubling condition but surgery really helps most of it.
Good luck on March 9th! I send you and your family positive vibes