Chiari Online Support Group

5 months after Chiari Surgery

My daughter was the one that recommended this site to me. She found comfort knowing other people were dealing with this before her surgery. She is 24 and just had her surgery March 17th of this year. They did a 1 sq inch removal of the skull and put a replacement in that area and also shaved the C1 and C2 bone. We are at the 5 month mark. They say it takes 6-8 months to truly heal from this surgery. The more she does, the worse it is. She has worked for me for 3 years. After her surgery she started out at 4 hours a day 2 months after her surgery. Within the last month she started working 6 hours a couple times a week. That even seems to be too much for her. She is a healthy girl that is an advid hiker. She has her good days and her off days. She went hiking on
Sunday and does “selective” driving (meaning she doesn’t drive unless she has to). Is it normal for someone to still be exhausted to the point of not being able to concentrate on a Thursday after a hike a normal drive on Sunday? We have had THE worst support when it comes to her surgeon and the MA. We finally got her an appt for the end of September AFTER I had to take her to the ER because she was in so much pain and was not in the right thinking capacity. The MRI showed everything was fine. Will this be the new norm? Will the next couple of months improve her symptoms? If anyone has any insight, it would be great to hear from you. I’m just a worried mom that needs her baby girl to be ok.

Hi Misty,

I just had surgery ( posterior cervical fusion C1-C3 and decompression) in February. Any surgery involving the cervical area is a slow and tough recovery. I felt great within the 2-3 month mark, and then felt like I took 5 steps backwards with pain and severe fatigue returning. My doctors said it’s probably increasing my pain/fatigue, as I become more mobile and re-work my muscles. I also avoid driving when possible, and have good and bad days. I pace myself with physical exertion, or my body just calls it quits on me! I have heard it can take up to a year to fully recover, but of course, everyone has a different threshold w/ recovery-time.

I am sorry your neurosurgeon hasn’t been much help. That can be very stressful to not have the support of your surgeon! Sometimes surgery can only do so much to help symptoms and/or the goal is to slow or halt the progression of symptoms. For many, it’s not a “cure-all”, but that shouldn’t mean the neurosurgeon should be dismissive. Many neurosurgeons are only interested in what anatomical issues they can fix, but I’d hope anyway, that he hears you and answers your concerns…Or, refers your daughter to a specialist(s) for residual symptom-management.

Maybe your PCP can step in and help your daughter get to a specialist(s) for symptom-management? I’ve also had to seek care for symptoms and come to terms that my surgery didn’t resolve all issues. :frowning:

I wish I could give you a better answer to her recovery and this being the “new norm”? I hope with more time, she’ll gradually improve, and feel like herself again. I feel for you both!

Best wishes,
Stacey