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,
Bons
Bons,
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
Renee
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
-Olivia