Chiari Online Support Group

Hearing spinal fluid in my neck


#1

As long as I can remember, occasionally I hear the spinal fluid moving. It’s like a rushing/squeezing water sound in the back of my neck. I always remember asking if other people felt that because even before my diagnoses, I can remember hearing that. It is kind of the sound it would make if trying to force water through gritted teeth? I know, weird. Is this a Chiari thing?


#2

I sometimes get that rushing and pulsing noise in my neck when I have a headache or stretch. Whether or not its Chiari, I don't know.


#3

I remember having that very thing about three years ago, but it went away. It started when the Chiari headache started, right after a Car accident. I would ask my neuro about just to be careful.


#4

I’ve had And still have those weird noises,there’s also a gushing in my head.I’m not sure what it’s all about but the fluid makes sence that’s what it soundalike.


#5

I have the same thing everyday.


#6

I just thought I was weird. When I move my head back and around I can hear a squishing noise and if I tilt my head back for too long the dizziness get much worse. I have a new symptom that affects both eyes now. I was in the shower after I was released from the hospital and noticed that I had glue on my chest from the EKG pads. I was straining my neck to look down at my chest and after about 5 seconds both of my eyes went blurry and could not focus at all. I could lift my head and after 3-5 seconds i could focus again. I can repeat this at will.


#7

I had that same sound in my neck at the back of my head 5 weeks post op today actually. Went to my post op appt today to find out from my NS I have to have a 2nd surgery because that squishing sound I hear in my neck is actually csf fluid sitting in the back of my head, just my luck. I would definitely check with the NS because that is not a good thing. I was having awful electric shock like pains in my head which would leave me in a seizure like state and I could not move. The pressure it leaves inside of your head is horrible and you feel as though your head is swelling, expanding and will explode at any second. It caused me eye pressure as well which was as horrible. I am just thankful I was able to find the cause and will have it taken care of soon, please check into it to make sure there is no csf collecting inside of your head, I would hate for anyone to experience the pain I live with on a daily basis day in and day out, no pain killers can help no matter the strength, its just pure agony constantly. Good luck to you I wish you well


#8

Totally Normal in a Chiari way......Pusatile Tinnitus

http://whooshers.com/whooshersounds.html


#9

NO, it is not weird at all. I am hearing the same kind of thing. I also hear sounds like I am swallowing crushed ice. Really weird sounds.


#10

Not weird at all. I get it as well. It used to catch me off guard, now I just smile as everything equals out.


#11

I am so glad you posted this. I had the exact thing. I would tell my husband and my Doctors and they would not know why. I was told I had Chiari Malformation 1 I had 5mm and 2mm and was about to have surgery thankfully with a pre post check up I had a kidney infection and could not get the surgery. I decided to get a 2nd opinion and went to Colorado to see Dr. Oro and He re-evaluated me. He said that what I had was Psuedo Tumor Ceribi (could never spell that right!! LOL!) If I had the surgery it would have caused slumping in the brain and made things worse, and the symptoms would have no gone away. What he suggested was treatment with a drug that would reduce the brain fluid which was causing too much fluid making that extra noise also causing the brain to push down causing pressure and not allowing any room. Which also caused 5mm and 2mm. I am doing well and so far no surgery needed and I hear less and less of the noise and less and less of the Monster Headaches which were taking over my LIFE along with other symptoms.

I know this was alot but I hope this helps you and gives you a starting point. I almost had an un necessary surgery. Dr. Oro looks you not as another $$$ for surgery.

With Prayer God led me to the right people. God is always in Control ; )

God Bless....


#12

I want to go yo Dr. Oro too! But mu insurance denied it! how do you get him covered?


#13

My husbands insurance had an In/out of Network service through United health care. With out that Insurance I don't know what we would have done. Call his office and ask what they cover. Did you insurance not cover b/c it was out of network?


#14

I also have the same sound and sensation. It is hard to explain and my Dr. would just look at me like I was crazy when I would try to explain it to him. Then I went to an NS and he said oh yea, that is your csf. Finally someone that understood. Still get it but not all the time which is the one thing that still puzzles me about my Chiari is that everyday is so different.


#15

I think I have the same thing. I never thought about it being a fluid like noise. I have described it to family like a grissly sound. Not sure if that's what you are also experiencing but it would make me feel comforted knowing that this noise is "normal".


#16

Feels good to know that I’m not alone with this! Thank you for all the responses. Christy, it is a grissly sound. Someone on here described it as like crushed ice or something, which I thought painted the best picture. It’s strange and I have a hard time describing it to people. I always thought everyone had that since it has always been something I heard, even as a child before being diagnosed.


#17

Did your ns say if it was normal? Honestly, it drives me crazy. I never had it until post op.


#18

I get a weird fluid sound when I walk. When my heels touch the floor, my neck makes a wet crackling noise. It started at the same time as the other symptoms. I don't know if it is related to the CS or the CM. It is quite strange.


#19

i've felt that only once and that was in the ER when i was being injected with the radioactive fluid for a CT scan.

I remember feeling like a "crunching" sound in my upper neck ... just as if fluid was being forced through a small opening.

it didnt hurt ... but then I got real flush (typical for radioactive CT injection).


#20

Thank u for posting. Yes i have the same along with the tinnitus and can seem very strange. Immediately after the sounds do ur symotoms change more so when getting out of bed?