Hello. In October, because I had a syrinx, I had decompression surgery with duraplasty and laminectomy of C1. In December, I had another mri and my surgeon told me the syrinx was shrinking and that I'd have another mri in 6 months (June).
I have been gradually healing but feel like things aren't progressing as they should. I still have pain on the left side of my neck/head. I also have shoulder and hand pain, which was there before my surgery. (My surgeon said the hand, shoulder pain had a 50/50 chance of going away.)
I talked to my surgeon's office a few weeks ago. He said no to physical therapy or even massage. At this point, I am not sure what to do. I feel like I am in limbo.
Does anyone have any thoughts to what I should be asking my surgeon or if I should go to another dr? A neurologist? I did go to a physiatrist but she only gave me steroids. I think she didn't know what to do with me.
Rest and recuperation sounds like a great medicine! I agree with PT and massage due to the syrinx and the possibility of causing further damage. Healing is an incredibly slow process! Don't feel like you're not doing something right because you're not healing AS QUICK. The fact is you ARE healing. We all recover differently depending on so many variables. Some of your symptoms may never completely go away and I doubt switching doctors would help since they are very wary of caring for another surgeon's work. It may be possible that the pain is from the syrinx that is still there, but lessening. Rest when it starts hurting, refrain from heavy lifting and straining. I do recommend having a neurologist as well as your neurosurgeon in order to screen for and treat other conditions. You may want to look into things like EDS and dysautonomia-conditions which often co-occur with Chiari. Hope this helps! XOXO
Hello Mistify,
I know this is 2 years later, but I was wondering how you have progressed. Has your syrinx gone away, and have your symptoms improved? Have you had any relapses?
Your circumstances, symptoms and diagnosis are very similar to mine. Surgery is this week and I was very curious to hear where you were in your road to recovery post surgery.
Thank you for sharing your experience.
Hello. Yes, I saw that we seem to be similar in symptoms and diagnosis. The plus from the surgery is that intense head and upper back pain is much better. I can sneeze again. The syrinx did shrink-- pretty quickly. It is still there and never completely goes away. I still have pain from the syrinx but it is manageable. I am still not really able to look up for long periods of time and upper body exercise can irritate things. I’ve had to modify activity. The recovery path is different for everybody!
Thanks for responding. Good to know that it gets better. I am hopeful for a full recovery, at least back to how I felt before February. I’ll share my experience post recovery, and imagine I’ll have more questions.
Thanks again for sharing and responding. It’s helpful to hear from other than the Dr.