Originally Posted by momof4
I am curious--if anyone reading this has had surgery for Chiari I would like to hear how you've done. It would be interesting seeing some response on this because there is so little information available! Good or bad, please share your story!
Hi...I understand your anxiety about this condition and the aftermath of surgery. I am 42 and had a decompression with a laminectomy, craniotomy with duraplasty in 2001, when I was when I was 35.
I think that recovery is different for everyone who has this condition and has the surgery...because the symptoms vary so much from one person to another. It took me several months before I gained strength, and I had terible pain and soreness in my neck and shoulders. Physical Therapy can help if you have a good neuro-PT who will focus on slow strengthening of the muscles that support your spine.
Your head is like a bowling ball, and when you have your neck muscles cut, it severely weakens your ability to hold that bowling ball up. The frustration comes with the lack of professional knowledge about this in the medical field.
IT is very difficult to find a neurologist who really understands the full scope of what we go through.The neurosurgeon is pretty much done with you once he does the surgery and sees you for your post-op visits. Then you have to find a neurologist who can monitor and treat your symptoms.
Find a neurologist to see...bring your records, surgical notes, etc. and explain your symptoms. Try the WACMA site for a list of dr. names.
It is a frustrating battle with the added twist of sometimes looking pretty healthy...therefore people think you are fine and can't understand what the problem is. Don't give up...keep going back til they do something for you. You may always have side effects and symptoms... arm yourslef with knowledge and get as much info as you can.
Best of luck....