This time tomorrow I should be landing in Denver for my visit to Chiari Care Center. I'm not sure what to think. I am nervous that they won't be able to do anything for me. Since my NL finally ruled out MS and I have my B12 and Vit D deficiencies under control, I'm assuming the symptoms I have left are chiari related. My NL orginally told me that the chiari was my "Red Herring" and couldn't be cause of my symptoms. Then after 2 more MRIs and a lumbar puncture, he told me to contact my NS. At that point, I faxed my reports to the Chiari Care Center and they accepted me.
First day down. Met with the PA and she ordered a Cine MRI which i had today and scheduled an eye exam for in the morning. I’m a little discouraged right now but I don’t really know why.
My appt with the PA tomorrow is a health one where they suggest lifestyle changes "because everyones not a surgery candidate."
The one surprising thing is our hotel room is a huge suite for just my husband and I. It’s the kind of hotel room we need when we travel with all 4 girls.
Thanks for the encouragement and I will post more tomorrow.
The last two days of appointments went very well. The PA really listened to all my concerns on the second day. She has many lifestyle change suggestions to help improve my quality of life. She wants me to try to slow down and not push through so much because she thinks it is making things worse. I still work 40 hours a week as an Accounting Director and have 4 daughters and a neice at home. I had an extensive eye exam to see if there was any swelling or thickening of my optic nerve that could mean a psuedotumor.
On Friday, my DH and I met wih Dr Oro. He was so nice and informative. He went over my scans with us. He did point out I have a compressed pituitary gland but really didn't say if that was causing any symptoms. I don't think he was going to suggest surgery because he thought I had the intrecranial hypertension. He then said a lumbar puncture would really tell if I had high pressure. Well, he had missed my Lumbar puncture report for July in my file which showed normal pressure. He did say that I had a very thorough NL. (Guess I'll quit saying my NL is worthless) We then looked at the CINE MRI that was done while I was in Colorado. It showed diminished CSF flow in one area and no CSF flow in another. At this point, he recommended surgery along with lifestyle changes (Paleo diet and exercise). He said the surgery has a 84% success rate which could even be higher with the lifestyle changes. Surgery was certainly up to me. My DH asked if I would see improvement wih just Lifestyle changes Dr Oro said I could.
After discussing things with my DH, we decided to go ahead and schedule surgery. I would have tried the diet and exercise first if my symptoms hadn't gotten worse starting in January of this year after I had been on Weight Watchers for 4 months and lost 30 lbs.
My surgery is scheduled for Sept 20th. (yikes) That gives me a little over 3 weeks to get things lined out for my DDs and work. He said I would be in the hospital fo 2-4 days and then off work for at least 4 weeks since I have an office job and full recovery could take up to a year. I was able to snag round trip tickets to Denver for $158.
Good Luck! I go to the WI Chiari Center and I'm in hopes I will find some answers and as silly as it may sound I too hope I will be able to say "I have surgery scheduled for ......"!!
I just had my surgery with Dr Oro on thursday, only in the hospital 4 days, I already feel better its crazy, I hope he can help you also. I had some lifestyle changes to do also -better diet extra vitamins, exercise…blah…stuff like that. Good luck with everything!
Allison, It so good to hear that your are already feeling better. It really eases some of my fears as my surgery date gets closer. Hope your recovery continues to be uneventful.
Diana I am so excited that you have a treatment plan. I pray that this is what will help you feel better and be able to keep up with all your beautiful girls. I know that you are more than ready to feel better! Keep us posted on how things are going!
Thanks for all the encouragement! I had surgery yesterday and it went very well. Dr Oro did say thing were more compressed than he originally thought. They are handling my pain very well. surgery started at noon and I was in recovery by 3:30 then off to ICU by 5.
I have already had improvement in my eyesight. They did say that could come and go. I sat up in the chair for breakfast and have walked up and down the hall. should move to a regular room this afternoon. I can say things are going way better than I had anticipated.
I’m going to rest now.
WOW...you are 1 day post-op and already typing away!!! God Bless YOU!!!!!!! You seem to me to be a real trooper....already walking the halls and sitting in a chair for breakfast......YOU GO, GIRL!!!!!!!
Thanks a million for the update...this will give much hope and encouragement to the members who are awaiting surgery!!
