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Chiari Malformation Community
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Avatar universal

Brain loose in skull- feeling?

Does anyone feel like their brain is somehow loose in the skull and just bounces around in there whenever you move your head quickly?

I do, and it hurts. Just wondering if anyone feels the same?

Have a nice day!
9 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi....I use to get that feeling but that was b4 I had the surgery....I have not had it since....

SO u r not alone.
Avatar universal
But did you also feel high pressure at the same time because for me it really feels like low pressure or vacuum in my head, like my brain is too small for my head.
7948950 tn?1421652729
Does it hurt the worst when you jump up and down? I feel that way too. Hence why I don't jump up and down. :)
620923 tn?1452915648
COMMUNITY LEADER

  Yes, it was a very strange feeling I would get the sensation of it moving around and times when it felt too large and was going to blow apart....

Have they tested u for ICP or POTS?

  @ Wyssa...I can not jump either...when I did the feeling was of an echo of pain....not sure how else to describe it....I never liked jumpin either...
Avatar universal
Yes, I can not jump up and down. I can hardly do anything actually.
I have POTS but (almost) nobody else with POTS that I have talked to has these symptoms, so not sure it is from that.

Wyssa, do you know what is causing this in your case?
Avatar universal
I just feel like inside my neck area  my head is not connected to my spine right. I have tremors now and it happened after I moved my neck back and forth with 8 hrs depositions. And every time I move my neck the tremors get worse it  just feels like something is wrong inside. I know when I had the whole In my spine they found it with a mylegram  now all they do is MRI for Chiari. I was wondering if tremors have to do with  Chiari's. I also  had to have the decompression back in 1995. I made medical history for living with the whole in my spine with symptoms for a year before I went to doctor for symptoms back in 1973. Any doctors out there or anyone know about tremors being a symptom from Chiari 's please let me know.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many  with Chiari have asked the same question if Chiari and tremors are related....and in my opinion I believe they are....

There are many related conditions to Chiari that can also cause tremors....

U said u had decompression surgery in  '95, may I ask were ALL related conditions b4 u had surgery?
Avatar universal
Yes,I feel a bizarre pressure when I drive over speed bumps in the road,my brain can’t keep up with my skull if I try turn my head too quickly,this is hell to live with! Back of my brain wobbles with every little movement.
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

Our heads can give us the sensation of the brain moving about and it can feel like it is squeezed in there so tight our heads may explode.....
May I ask when you were diagnosed? Have you had the decompression surgery?
5 Comments
Hi Selma,
Thankyou for your response.

I haven’t been diagnosed with anything as of yet,I have only just plucked the courage up to confess my symptoms to my GP,I have a video consultation with a neurologist on the 9th of October.
I have suffered a great number of concussions in my life and have a feeling it may have something to do with that.

Had an mri for headaches around 18months ago,results were clear I believe.
Can I make a suggestion, contact the facility that did your MRI studies and request copies of the MRI and the report....this will aide you in getting answers....PLUS many Drs and radiologists do not 1- consider Chiari an issue 2- don't look for things outside the RX on the script...so if your Dr didn't  say to rule out Chiari or syringomyelia, or something specific, they may not include it in the report to the Dr and they may say all clear, fine what ever ......
Once I got a DX from a MRI, my Dr asked for copies of ALL MRI's I had had up until then and the reports....I found out years earlier it showed on MRI I had tethered cord....but I was never told....

Always request copies when you have testing done.....if you wait and ask your Dr he will charge you, but the facility shouldn't.
Thankyou for your advice here.
I shall request a copy of my mri report ASAP.
Thankyou Selma
Hi again Selma,
I’ve spoke to a neurologist and asked him if my scans show if I have Chiari and he said no,I haven’t,no herniation of my cerabellar tonsils.

He thinks it’s migraine,if it’s a migraine then it has been constant for 20years!
Neurologist has prescribed me gabapentin I believe.
Hi...did you get a copy of the MRI and report.....there are many Drs that do not recognize Chiari even when it is visible....and it is not a certain length of herniation which many use to give you a DX....so, always request copies of your MRI from the facility that did the study since they do not typically charge you, your Dr will.. And request a copy of the report as well.
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