Meet with 2 Ns and they both say I need surgery. I don’t have a date yet but I’m very nervous… Any advice would be great!


I am so sorry that you are feeling so nervous...This is just my opinion here...Your feelings are completely justified and normal! Who wouldn't be nervous at the thought of major surgery?

That being said...I hope that it gives you comfort in knowing that 2 NS's said the same thing...that you need surgery.

I had my decompression 5 yrs ago...Looking back now, I can honestly tell you that I am glad I had it done...I still deal with pain issues and some other problems..but, I am better than I was before the surgery.

I had no infections or leaks..It took a long time to see/feel the positive results...the massive head aches I had before the surgery was one of the major symptoms that eased up , fairly soon..

Can I ask you what your biggest fear is? Hopefully others will chine in and give you their thoughts and experiences.

Keep me posted!


It's normal to be nervous! I was a wreck before my surgery last year but now I have no regrets! :)

I, too, really feel for you being nervous about surgery - who wouldnt you are letting someone cut open the back of your head! I had my surgery rescheduled, so the good bit of this was that I got time to get my head around it all while I wasnt working. I was a bit of a mess - moody , easily irritated, defensive - but, those around me were patient. There were days where life was good & I had some really quality days of family & friends. I am fortunate enough to have a good psychologist who helped immensely during this time. Thinking of you through this time. Isnt it great that 2 NS have agreed!

Hello, I was afraid until I began feeling so much worse, I knew I had no other option. It has been 8 weeks and I feel amazing!! Went back to work at 6 weeks. I felt that I was in great hands with my doctor and that is what took the fear away. Another thing he recommended is to use your own tissue (mine came from the side of my thigh), he said your body accepts it and heals better. I would do it all again in an instant :) It took away my headaches, numbness, pain and stuttering.

Hang in there and the best to you!

We’ve been told by one of the best chiari surgeons that my daughter needs a craniocervical fusion folliwed by three surgeons who said no.

The we went to another top.chiari specialist who sed, yes, i see the problem. She needs.the fusion. That was end of May. He wanted in the summer

I was great, i.have a second yes.for surgery in the field.

Well our second.visit he completely changed his tune and said go.for physical therapy and.why dont u come back and c me in 6 months. the doc couldnt get.out of the office quick enough. This visit my.husband came and.we.recorded it. He.also said.he dsnt know if she.will need in the future.

The whole appt seemed.strange. my husband said to forget it and.leave it.go. Does.anyone know if chiari affects ur mind? My daughter seems to make a.lot.of.poor decisions. I.dont think anymore.

Can anyone shed some light? think i’m.crazy!



There are really not a lot of words that will alleviate your anxiety. But I can tell you this...the only one than can push you. What we have is a life altering malformation. I will always believe that surgery sooner is better than surgery later. This is me and not textbook or research. The sad part is that the NS I have met do not feel the need for surgery until the symptoms are so severe you cant function. The problem with that is that by that time some of the damage is irreversible. The first NS I consulted with said my headaches was not coming from the CM, in less than 6 weeks not only had my herniation increased from 9mm to 13mm but my vision was blurred, my abilities to grasp were affected, and my balance was affected. I thank God I sought another NS....and my surgery is scheduled for Nov 6 at 0700...yay!!! I feel like there is a light at the end of a long dark tunnel. My family is standing with me as we prepare to gain our lives back. Is it going to be easy? No. Will there be ups and downs? Yes. But I am a 44 year old RN that cannot work int he field that I love so much...who needs a blind nurse that cant hold a needle steady? I have 5 kids and 2 grand-babies that have to visit me in my room because I'm so tired and everything affects my head and neck pain, laughing, smiling, coughing...that is no way to live and its not fair to my family to have to live in darkness and silence so that I can have a little peace. The way I see it is we are the ones that feel what we feel. We are the ones that will have to decide what we are willing to endure. Please know that I have learned in joining my CM family that what ever decision you make...we are here for you. P.S. this is the one place where no one ridicules you for changing you mind!

I am Praying for all of us and I wish you the best!


Just remember, God is in control… Always.<3


Good Morning,
You were in my thoughts this morning just want to send you a hug this morning!


Thank you all very much for the kind words and advice!

You are very welcome!!!