Surgery went well. I met a friend on her that had the same surgery, the same day with the same Dr! We didnt realize this until 2 days prior to surgery. It’s a small world 
we got to visit in the hospital on the 3 day post op. We were both discharged on the sane day We are lucky to have one if the best NS in the country. A big thank you to Dr Dong Kim. The first week for me was great it was day 8 when I started to feel the pain. I’m having painful muscle spasms from my neck up to my fihead. Not sure if this is normal? I have an appointment with my NS tomorrow. He did call over the weekend because I have been trembling firm head to toe and for the guest time in my life my blood sugar levels have been in the 300’s requiring insulin. Weird! He told me when he called that once he opened me up his team were astonished at the severity if my Chiari. He said it was the worst case he had to date. He based this in how squished my brain was and the herniation was bigger than what the MRI had shown. I told him I was ok the first week and now I am struggling. His explanation was that my body had adjusted to adapt to Chiari and now its fighting the new changes. Week 2 -4 are going to be tough. He also had to remove a great portion of C1. I was curious as to why? I have lots of Q’s for him tomorrow. All in all I am doing good! When I awoke from surgery my NS was there and he asked how I was, he laughed at me because I put my hands over my ears and yelled at him for shouting. I told him that he was being to loud! That was my first symptom to disappear… I could hear again 
Question about your blood sugar...were you on prednisone or any steroid ?
Yes I was. They said this was the reason my blood sugars were elevated so they took it away before I was discharged. They were ok for a couple of days at home and then they were up.
Hey..My appt is tomorrow too..what time is yours? My week 1 was painful..week 2 is shaping up to be odd..Dr. Kim called me last Friday. We didn't talk long. I've had no blood sugar problems. My hearing was better..now it is coming and going. I'm anxious to talk to Dr. K tomorrow too..I have many questions also. My appt is at 12:30.
My appointment is 12:30 also! I’m having issues with severe headaches (spasms) when standing. They are eased by lying down. And now my hearing is muffled. What are you experiencing?
Yes..the same..the spasms are in my head...not my neck..and now I'm having muffled hearing also...also vision issues..like being on the computer hurts inside my head..and I feel like I am slow to respond..and words get jumbled. Did he tell you weeks 2-4 would be the worst? yikes..my mom is going home this weekend unless I need her longer..Where are your headaches? Yay I'll get to see you tomorrow!
Spasms go from my neck all the way to my head. I’m also slow to respond. Think that’s the meds I’m shaking from head to toe. He said that week 2-4 would be the worst because that’s when your body starts to heal.
Wow..and I was hoping it was getting better. I am not having the shaking thank goodness. I am so sorry you are dealing with that. I did notice that the last few days have been really challenging..I thought it was because i was trying to do too much. Also, my ears starting ringing again today...and they haven't done that since I woke up from surgery. I've not had the neck spasms..but I don't think he had to do anything to my C-1..if so, he hasn't said so.
SO WE ARE JUST NOW HEALING? LOL...maybe that's why the last 12 days have been such a blur.
Did you have Blood sugar problems at all prior to surgery?
Are you having any eye problems?
AND..I have weird numbness on the left side of my head..and the majority of my pain, spasms, etc is left sided.
I love that we met and we can "talk" about this.
I never had blood sugar problems. The ringing in my ears came back too. He said we have to remember we have had these crazy symptoms for so long that now our bodies are fighting the changes. We will have a better chance if we ride it out and rest when I stand up my body leans to the left kind if like someone is shoving me. I don’t have any numbness. The only eye problem is the blurry vision it’s great that we met because we had the same surgery on the sane day with the same DR! We can truly compare notes :))
One wired thing is that everything I eat is spicy! Feels like taste buds are on fire.
I guess that we have to be patient, rest, and ride it out...like you said. Neuro surgery is weird..but of course..all things Chiari-related are really different. My vision is also blurry..but not as bad as pre-operatively. They cut more of my hair than I exepected..I'm getting married in 9 1/2 weeks...I hope to walk down the aisle with decent hair and no head spasms.. I will see your pretty face tomorrow!
Wow that's crazy..haven't had that one...have had some really nasty nausea a few times though.
We are gonna get there early tomorrow and try to have lunch prior to our appt (it's a 3 1/2 hr drive for us)
We'll probably eat at Au Bon Pain...it's in that area between the elevators and the skybridge if you get there early look for us.
Lol… Early? I’m always late these days See you tomorrow!
I’m so incredibly happy for you!! You’re going through a crappy time right now but you see the light at the end and I cannot tell you how blessed you are!!! I’m seriously considering traveling to seeing your ns I’m in the SA area I have one more appt and I do have hope for him he’s actually a pediatric neurosurgeon who has looked at all my stuff and he does these surgeries all the time and he’s seeing me because I have refused to see anyone who doesn’t do these surgeries on a regular basis
Thanks beeba. That makes a lot of sense. I can show this to loved ones because I feel that everyone expects me to be fixed now surgery is done. (Mostly me). I actually felt guilty for spending most of my awake hrs laid down because of the pain. And I was wondering when I would feel “normal” again. Your explanation is simple but to the point! Thanks again
I feel the same. Guilty for not being “well”. Thanks Beena. The sponge example makes perfect sense. Did you have vision problems? I can only use my phone or computer for a few minutes and this I didn’t expect.
You are so right!i am having those vision issues too. The letters look so blurry but I can still read the word. It started for me a couple if months before surgery. I have had it since surgery and it was worse. I just put it down to the meds. I guess I can live with that as its not pain. For now, anyway
My 2 week post op appointment went well. I got to catch up with mmrobinson When my Dr walked in he sat down, looked at me, and said “you poor thing”. I immediately looked horrified and said “what?”. He told me he couldn’t believe that I had gone so long with out a diagnosis. He said when he opened me up him and his team were astonished at the severity of my Chiari. “The worst I had ever seen”. Hearing that actually made me feel a little tougher. I have been feeling guilty for taking it easy! He told me “chiari is not your problem anymore”. He gave me a hug and a kiss on the cheek and told me to take it easy So I am!