After finishiing with my appointment yesterday, I left feeling more confused. The Surgeon explained the surgery to me and exactly what happens and the recovery. Im just not sure if its going to be the best fit for me. To be honest, im scared to have the surgery and to not have any improvements, or worse, to come out and feel even worse than I do now. How many of you felt better after the surgery? Did you symptoms improve after? How long after did they improve? What was your biggest improvement? The thought of doing the surgery terrifies me.
The doctor showed me my MRI and my chiari is still at 6mm-7mm and my CSF is almost blocked in the back where my chiari is the tightest. He said he would shave off a little of my C1 vertabrae and finish the decompression surgery. Any advice would be really help.
Vanessa, I to was apprehensive about surgery. I got diagnosed early last year and at that time my only symptom was head/neck pains. By the end of the summer I was also feeling numbness in my hands and feet. After revisiting the surgeon in November he strongly advised me to have surgery since I'm starting to feel the effects of the over crowding around my brain stem and spinal cord. He basically told me that I had to have the surgery if I didn't want to suffer irreversible damage to my nervous system. So I'm having surgery Jan 28th.
Good luck with whatever decision you make,
My advice is… I am doing everything going to every doctor going through every painful test so I can have the surgery to just have some relief and some is better than nothing. I personally would do anything for relief you have to do what’s best for you
I know how you feel. I was diagnosed in december with a 24 mm herniation. I am scared after talking with the neurosurgeon. I have been trying to find another neurosurgeon to talk to because i would lime someone with more experience with the condition. Does not seem to be many around guelph, ontario.
I get that feeling! I was very worried about going through all of it and coming out on the other side with no relief or worse- I had surgery nov second- I am glad that I went through it all- the pain I have now compared to before surgery is almost night and day- I am still healing so I still have some strain and some headaches- but the recovery wasn't as painful as I thought it would be- thank goodness- I was sick for five weeks but that was due to meds- once I had them changed- or rather found the ones that needed to be changed or substituted things were good- I am back to work part time currently but should be back full time by next month- still taking things easy but I am glad that I went through it all- just the relief of head/neck/shoulder pain was worth it-
I wish you all a better year than the last! that's my goal- we all need some sun shinning down :)
I will be praying for you. I know Chiari Surgery is scary and you don't have any guarantees. You do have a serious problem with your CSF Blockage. I had to have emergency surgery and almost became a quadriplegic I didn't have a choice. I don't want my situation to happen to you. I never tell anyone to have surgery.....never, but I will advise you not to wait to long with CSF Blockage. It will only get worse. I am so very sorry. We will be here for you every step of your journey & understand.
Hi there, I too am very apprehensive about surgery, but also looking forward to the potential of it changing my life. The discision wasnt an easy one, but i decided i cant go on the way i am.. having a constant headache, afriad to bend down, laugh, cry, sneeze etc..
Worse case senario it doesnt help, im willing to try anything. Ive seen more positive stories of good outcomes than negative. but to be honest i dont read the negative stories as ive made my discision and i dont want to change my mind.
im sure you'll be fine, it does sound like you need surgery. ill also pray for you.
We have an incredible group here. Sometimes our successes are gauged on a smaller scale. Every Chiarian I know has different experiences and pre and post op symptoms and side effects. Some never have surgery at all. I learn so very much from every Member. I have made Life Long Friends & Family here and I guess I am different. I joined at a horrible time in my life and found Ben's Friends out of Desperation and stayed out of Love and Respect and my Great Need to Give Back just a small part of what I have been freely given here.
Many people see improvement after surgery, but at different levels. Most Chiarians have Post Surgical Headaches. The post surgical symptoms vary depending on the Chiarian.
This is very hard, but I know you will dig deep inside to where we keep our real strength and willpower and you will make it through your surgery & face whatever challenges that you have.
I promise if I have made it and others I know that has had a difficult situation has so will you. When you get discouraged ....come here....when you need to vent......come here. I cannot make you promises......other than we will be here for you. Always.
I was terrified at the thought of surgery, too. I really thought I would never have it. I am not a risk taker and don’t like the unknown. But as others have mentioned, earlier last year I decided I couldn’t go on the way I was and opted to have the surgery. I had it December 13th, and so far my experience has been nothing short of amazing! If you do have the right doctor, I believe this can change your life. Best of luck to you and feel free to let me know if you have any questions!