Hi all! I'm 7 months post op and I still feel terrible. Head still sore and tender @incision, joints are stiff, left side stilll a little numb, left shoulder and elbow frozen, bells palsy since Feb. 2011 still terrible, ears ringing, headaches and pressure still there.
My surgeon who performed the surgery has been very dismissive to my concerns about my recup. All I keep hearing is "this is all normal", "I told you this surgery is extensive and will take time to heal". I get all that, but, well.....I know I feel something isn't quite right.
So....I took matters into my own hands and went to see another neurosurgeon for her opinion on my recovery. I went this past week. First let me say, I was very impressed with this doctor. She listened, she truly listened, she cared, hung on every word I said. Most importantly, she is a true expert in Chiari!! She knows everything about it!! I actually had an intelligent conversation with a doctor, it was so awesome, surprising and so emotional at the same time.
After examining me, talking with me and looking at my latest brain MRI, she concluded that my 1st surgery was not a success. I wasn't decompressed enough and I have a large amount of cerebral spinal fluid build up from a leak (aka pseudo menningocele) putting pressure on my brainstem. I had a laminectomy & that looks fine, but the hole made via craniectomy is too small. I virtually still have no room for csf flow. Crazy stuff!! I knew I wasn't feeling well and no one would listen. She is recommending a 2nd brain decompression surgery.
I'm scared and just so upset right now. Part of me says I'm NOW in good hands and part of me says who's telling the truth, my current surgeon or my new surgeon?? Definitely was impressed with this doctor, but I am going to try and find other NS's for other opinions to confirm her findings. Want to feel better, but not going to be hasty and rush into anything.
Need prayers and any kind of positive feedback. How common is a 2nd decompression?
Thank you for reading (I know it's long, sorry!) Just freaking right now. The mere thoughts of going through this surgery again makes me cringe.