Chiari rollercoaster

i everyone I am currently 8 weeks post op and had my follow up on the 22 0f may. My mri looked good as far as no more blockage. My pain is primarily in my neck area as well as my arms and legs are weak. My ns wants me off work for another month and wants me to do pt for another 8 weeks. I feel im back on the with more therapy more doctors. 7 years of 20plus docs physical therapy various meds, not to mention thousands of $, & now owing over 3000 which I dont have. I dont regret having the surgery, feel I have lost my own identity because of it. I know some of you can relate and I feel im going round and round in circles. my thoughts also go round & round wondering if thats part of this mental fog that other chiarians talk about. ifeel I just wrote a book and I could go on and on, I just never had many people really care about me. Had to get this out. Thank you all for being here

Hi Robin,

I know at times I felt like I lost myself pre and post surgical. It took me 5 years and 52 specialists to get a CM1 diagnosis. Then it was too late and I had to have emergency surgery. I honestly understand. I lost myself for a very long time. Be kind and gentle with yourself. You are still healing. I was encouraged to walk daily and stay hydrated and eat well, especially protein. Over time you will find yourself again. You will be wiser and stronger, but you are still in there. Are you taking any medication that may be adding to your mental fog? Many do. You might want to try Arnica Gel for your neck. I get mine at Walgreen's. It's called Arnicare and I use it 3 or 4 times a day. I even put it on my head and face when I have a headache. It's a Homeopathic Natural Remedy made from a mountain daisy. It has been used since the 1500's. It took me a long time to try it, but I am so glad I did. Emmaline can tell you more about it than I can, but I would be the last person to say it worked if it didn't.

You will find this Group is truly wonderful. Every post op Chiarian understands. Please know you can come here anytime you need to talk or vent or laugh about something silly or share something amazing. We aren't going anywhere and we do care.

Tracy Z.

I can totally relate. I am 4 months post op as of tomorrow. I went back to work 3 weeks ago, suffered a big set back and am now back off work. I, too, still have a lot of neck pain and stiffness. I am in physical therapy for my neck and it is helping. I also have the brain fog feeling. I call it my “Chiari brain”.
I also feel like I have lost myself because of this diagnosis and surgery. I feel like it has all changed me. My brain just hasn’t comprehended it all yet. I’m learning to give myself permission to heal for as long as I need. I’m learning to be patient with myself in this difficult time. I think the only thing that we can do is to hold on to hope that we will continue to heal and may feel better in time and then to look for the things we can be grateful for every day, despite our struggles. I hope you are able to find some hope and peace!
Take care of yourself!