Chiari Online Support Group

Upcoming Member Surgeries

wonderwoman2006- date unclear
Tiffany- March 31

jen- date unclear

tes3- date soon

dolphinlove- April 9

Kayla C.- date unclear

Megan- April 23

Thanks Laurie for creating this, very helpful!

BaltimoreBaby said:

Megan- April 23

:slight_smile:

Braylen - April 9

Surgery on February 21st. I don’t know anyone who’s had Chiari Malformation and feel isolated. I keep hoping I’ll wake up and it’ll just go away but that’s not physically going to happen. I’m so accustomed to the pain because it’s constant with waves of intensities that I work everyday and follow through with any other responsibilities. I rarely discuss it with others because I just don’t feel like they’ll understand. Surgery is so scary. I’ve purposely not googled pictures because I think I’ll chicken out. Any advice is greatly appreciated. :pensive:

1 Like

Surgery 11th April
7days to go

Jenna - July 26th -

Celeste 6/27/2018

3rd surgery- 3/5/19

I would really appreciate if you all who have had surgeries already can share your experience. Thank you so much!!

Hi, Ruby! Having complications can make the surgery scary as if it is not scary enough already by being a brain surgery. The malformed area has been compressed since birth and undoing that does cause discomfort and aggravates the tissues and blood and cranial fluid flows.
Feeling better, comes progressively with time: 6 weeks, 3 months, 6 months, a year. I felt better for a week and then developed fluid on the brain and ended up back in intensive care for 4 days.
9 years post op I have found that I still must deal with the Chiari and still seek occasional medical care. Looking back I am grateful I found out what I had and that gave me an opportunity to know what it was and manage it as best I can.
Chiari is manageable, but you may not like the fact that changes may need to be made to your daily routines. You may need to consider the following: not over exerting physically or mentally, accepting the fact that your central nervous system may become easily agitated, and as you continue to age other issues could arise.
9 years post op I had painful episodes that compromised my vitals and motor control, but my internal medicine doctor started me on Duloxetine (Cymbalta) and that has helped considerably for my situation.
This Website is a great tool. Hopefully you will stay in touch.

3 Likes

Joy Milnar Robbins Chiari surgery April 15, 2019

Lakan 12yrs old surgery scheduled for may 22 2019. We are terrified. Any advice would be great.

My surgery is on 5/20/19. I am nervous, but also hopeful.

1 Like

My surgery is next Thursday, 11/21

My surgery is scheduled for this Monday-January 6th.:purple_heart:Also,sending positive vibes and well wishes to all of you on the same journey.

I am feeling a huge nervousness-how did yours go?

Hey there! I am new to the group. I just discovered that I had Chiari back in November 2019. I’m 28 and my symptoms have now gotten worse. I’ve always had headaches and neck pain and my hands usually hurt almost like I had carpal tunnel. Last June is when my hands got weaker and numbness began. I have pain when I sneeze or cough in my arms now and my right foot will get numb from time to time. I’ve been reading on here and seeing how different symptoms are for everyone.
Went for and MRI back in November and it showed I had a syrnx down to about T3 and Chiari. We made the decision for me to have surgery at Vanderbilt the end of this month. We were going to wait since my symptoms aren’t too severe, but we would like to start a family soon and my neuro said it would be best to have a surgery before getting pregnant. My surgery is set for May 29th. Any advice or any stories of recovery would be great!

I’m having surgery on June 8th. Any advice on what to bring to the hospital and what to expect would be greatly appreciated.:grimacing::crossed_fingers:t3: