What is this symptom called? Have you experienced it?

Sorry to be so posty lately, but I am still trying to learn and you guys are the experts!!!

I hope I don't sound off my rocker when I try to describe a symptom I have had since the surgery... Hoping you can shed some light for me!

I get a sensation that feels like a wave that goes through my whole body. Usually starts at my head and runs downward. I guess I can describe it as like an electrical wave without pain. It is very similar to how I felt before surgery when I was going to have a dizzy spell, but I don't get dizzy and it seriously only lasts a half a second when the dizzy spell would last for several minutes. It kind of feels like my body is trapped in an echo. I don't know how else to explain it. Sometimes I will have several in a row or just one. I have noticed I get them more with movement, but I have had them sitting and laying down. I know I'm weird!

Do any of you have anything similar? If so, do you know what it is or why we are having it?

I haven’t had surgery yet, so I can’t speak from experience. But, I would guess that this may be your CSF flowing like it hasn’t for a long time, if ever. I’ve read that it can take awhile for your body to adjust to the increased flow. This is just a guess, so you should ask your NS about it. Hopefully, someone with post surgery experience will chime in too.

P.S.- You can post as often as you want…there is no limit…I promise;)

Please don’t apologize for asking questions. That’s one of the reasons we r here! That being said. I had surgery in 03 but can’t pin down exactly what feeling u are describing. I have weird sensations all the time. I’m sorry prob not much help but i usually chalk it up to nerve damage from being mis diagnosed for over 20 years.

It could be what we call the "the stroke sensation", it feels like an electric shock from head to toe then disappears. Like your hair is standing up on your head but it isn't. Not sure the cause but several people I know with chiari,including me, experience this.

No Michelle, You are not weird at all. My granddaughter who is 8 years old now, still has some problems with her surgical site. It will be 3 years June 22 since she had her surgery. Being so young she is not able to fully explain what she is feeling when she has these spells. She has spells jerking her head to the side like something is bothering her in her neck. When I ask her if her neck hurts she will just say it feels funny. Sometimes she has spells of stretching her jaws open wide, so we just don't know. I guess when you have surgery like that where the nerves and muscles have been cut there will always be different feelings. After breast reconstructions 13 years ago I still have some stinging pains in that area. I hope things will go better for you and you will be feeling better. How long has it been since your surgery?

I have not had surgery, but I too have the same thing that you discribe, I was told that it was a form of a seizure that I was experiencing

HI Michelle,

I have no idea what to call what you are experiencing, but I have them also. Usually this happens when I am in the shower or someone hugs me around the neck. It makes me want to drop to my knees. I have an oval indention on the lower occipital region of my head and the nerves are quite touchy. I wish I could help you more. Please know you are not alone.

Tracy Z.

I had sensations like heat waves going through my body. It would start at my head flash through my body. Kind of felt like a hot flash. I am 9 months post op. Still having strange feelings and little pin prick snesations. I am trusting that it gets better each month.

in my experience depending on what you believe is a spirtual thing,

your body is able to be alive, your spirit is able to be with you, and not stand away from you,

enjoy these,

I have the same symptom post op. I talked to my NL about it and he thinks it may have to do with my blood pressure. I have no idea if that is true or not. Just wanted to throw that in there. They don't hurt me, but I do not like the way they feel.