Chiari Online Support Group

15 month post op


#1

I want to thank this blog site for all the information and help preparing for the scariest surgery anyone can go thru. From my experience I hope to help others. brief description of my issues: took 10 years to be diagnosed with Chiari. 3 years prior I went thru 2 level disc fusion in my neck which was thought to be my only issue. after 3 months and ALL chiari symptoms returned, one more mri and the diagnose of all my problems was found. my pc did not know what to do, so I started with on line research then started to “interview” specialist. most of the neuro’s I saw SCARED me to death and they stated I did not need surgery. knowing my own body I knew I needed help and not from meds that were going to mask what was taking place. I finally found a neuro/ brain specialist. he looked over everything, talked to me like I knew what I was talking about, told me he would do the surgery when ever I was ready. guess one take away is find the right doctor who will listen. also find a brain/ neuro who specializes in the back lower brain. i believe also have more than one mri. try to have the mri when you are having an “attack” if possible. MY opinion is the tonsils grow and shrink which is why our issues come and go. with in 3 months 3 mri’s mine measured 9mm, 22mm, 16mm in that order. if a doctor does not understand this happens and all they see is the smallest measurement then they may say your not a candidate for surgery BUT the next day they may “flair” then that mri would indicate surgery is needed. As for my decompression surgery, i had a mesh net placed to “hold” my brains together, C1 notched (almost completely removed), my dura opened for csf flow. basically a little bit of everything done (don’t forget C3-C4, C4-C5 fused). My surgeon ended up doing way more than he thought he was going to do but did everything i needed. I was in ICU 4 nites and released from icu. back to work (desk job) in 4 weeks to part time and full time on week 7. back to riding motorcycles in 6 months. basically this is all scarry but in the end should be well worth it if you have the right doctor…please interview as many of them as you have to. good luck to everyone!