I have Chiari and Syringomelia,but im scared to have the surgery.Can anyone give me some advice?
I have both like you (SM and CM). All I can say is that find a NS that you are comfortable with and who will listen to you. Unfortunately, my experience is not an unusual one in trying to find a good NS who is knowledgeable and who will accredit the symptoms we experience to CM and SM instead of something else.
Welcome to the group and if you need anything just ask.
Mike
Donna LuvsGOD,
You said it....it's almost scarier not to have it! It is a pretty safe surgery. All my NS's told me that the spinal surgeries I had were far more entailed and dangerous than my Chiari decompression/laminectomy/duraplasty. I wasn't afraid of the surgery, but the post op. Get as informed as you can and know what your up against and get your mind around it. My surgery was 8 years ago and I hadn't talked to any Chiarians prior to surgery, so I was a little naive about the post op recovery---which was good and bad. Now I know what I went through was completely normal. Any questions ask away! Everyone on this forum is wonderful and full of great info! Look at old posting too....lots of good conversations!
Hang in there!
XOXO Monique
Donna, the important thing to know is that you have to be comfortable and ready. Mental state is (clinically proven) one of the most important factors in surgical recovery. You go when you are good and ready and not before. It’s really a matter of when your quality of life is bad enough in your opinion to outweigh concern for surgery. And talk with lots and lots of people here and elsewhere because that’s a huge help.
Plus, anyone who says they weren’t scared is either lying or crazy:)! It’s abnormal NOT to be scared of lots of things, this included. But in the end it’s all good.
You are right…it is abnormal to not be afraid of surgery. Unfortunately my Chiari surgery was my 14th surgery, at the the time, and I think I was almost “used to” it…which is crazy!! No one should ever be used to surgery! So I am the latter, crazy! I’m now at 21surgeries ( obviously Chiari isn’t my only medical issue)
And Docj is right…don’t do it till you are totally ready. I waited two years after my diagnosis, even though all 4 NS I got opinions from said I shouldn’t wait. It"s a big decision!
:o) Monique
I totally agree with Michael. You have to find a NS with CM experience & you have to totally trust him. What has your NS told you so far? I know this is very scarry. Please know we have all been there & understand what you are feeling. You are not alone Donna. I know you are a Christian & we both know God doesn't make mistakes, so He has a plan for you. I promise.You have 817 other Chiarians in this group that are here for you. I will be praying for you to find some peace & feel God's love.
Tracy Z.