Chiari Online Support Group

Symptoms after surgery 2017

#1

I had decompression surgery in 2017. I have been having headaches almost daily. I am using Aimovig injection for my migraine with no results. Lately I have been feeling sick when I turn my head and just nauseated and like my heart is about to pop out my chest, also like I’m about to faint. I also notice that when I pick up something heavy I get a migraine right away. When I laid down on my neck the sensation I get is uneasy. Has anyone felt this way? When you had decompression did they do a CT or mri to confirm everything should be where it belongs. I’m confused don’t know what to ask or say when I see my neuro. I need some help with that Thanks!!!

#2

Simply tell your doc what is going on…

make sure you make a list before your appointment (keeping a diary is helpful too)

Don’t try and diagnose anything that will divert the attention form your symptoms

What you do is make your list: When I do X, then Y. Your symptoms are concerning for sure -especially to you, but that doesn’t mean its chiari or a surgical failure. There can be many reasons for what is happening to you. (could be as simple as a middle ear problem, seasonal allergies or even a chronic sinus condition.) The more if-when statements you can give him the more easily he can close in on help for you

Remember, and I don’t mean to be debbie downer, that you can only TREAT Chiari, there is no cure. The best results are the result of a summation of treatment. Don’t depend on JUST a neuro assesment, but consider a thorough ENT appointment. In fact it may be helpful to ask your neuro for recommendations of one he has worked with.

#3

Thanks for the information I will keep a diary from now on. I know he keeps switching my meds and they don’t help. I just am trying to stop taking so many meds and just feel relief from these migraines.

#4

I find that taking a deep breath before bending and exhaling on the way up prevents the nausea and dizziness. It also controls my heartbeat. My neuro said it’s a way to manage the pressure in my head.

#5

When was your last MRI? I always had one 3 months after and a year after. Some drs will do 2 years after depending on how you feel.

#6

How about the pressure behind the neck? I feel like my neck is always stiff and achy.

#7

I haven’t had one since my surgery in 2017. But I did have a quick CT. I always wonder if I should request one.

#8

Getting a repeat mri is usually routine for a condition like this. Surgery doesn’t fix the problem just hopefully prevents more damage. I would say ask for one since you haven’t had one and with your current symptoms it would be good to check.

#9

Hi!, I suffer from the same thing exactly and it’s gotten worse so I’m going to Mayo Clinic tomorrow for full study of my brain-stem and lower brain. They feel its due to the trauma from the decompression…like scar tissue, kinks in the stems & damaged mussels that were cut. It’s all a mystery right now but I feel your discomfort; I don’t go many places because I feel so restricted physically. One tiny move can through me into a debilitating state. I will pay for you!!

#10

I also have been feeling pressure in my head and a little dizzy when I lay down. I hope he is willing to do the MRI.