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shar3n

anyone have arnold chiari malformation

Posted by @shar3n in Brain & Nervous System, Feb 14, 2012

arnold chiari malformation

alexsimon

Posted by @alexsimon, Mar 2, 2012

Hi Shar3n -
There is some information available on mayoclinic.org - mainly just specific to chiari malformation but arnold chiari malformation is mentioned several times.
http://www.mayoclinic.org/chiari-malformation/

Also, if you are interested in seeing a Mayo Clinic physician you can click on the "request an appointment" button on the upper right hand corner of your screen.

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

razzle51

Posted by @razzle51, Apr 4, 2012

judy are you the one on FB group

judyhobbs

Posted by @judyhobbs, Apr 5, 2012

If FB refers to facebook, I am on facebook, but I don't recall ever mentioning the chiari on there. I haven't became very profficient with using facebook, but, actually, I have wanted to get in a discussion about chiaris on it; I just wasn't sure as to how. Do you have a group for chiari, that you are in?

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

judyhobbs

Posted by @judyhobbs, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

Posted by Anonymous-0c80f1ff, Mar 5, 2012

I have a chiari and I have some strange things happening to me, that I think might be related to it. I'd like to ask others if they experience similiar to mine. One very disturbing incident was just as I strained to use the bathroom, the pressure in my head was unreal...I lost all control (my equilibrium) I was almost incapacitated for 2 hrs. My husband called 911 & they took me to the hospital, where I was had a ct scan to rule out stroke, an ekg, and blood work. Nothing was revealed by the test & I told the er dr. about having a chiari; so he said that might have caused it. Also I have a constant vibration & souund in my head. Does any of this sound familiar to you?

hoagie6

Posted by @hoagie6, Mar 19, 2012

I have chairi and what you have described sounds VERY typical chairi symptoms! have you had an MRI to see how many mm the herniation is? mine is only a few mm so they treat me like I have nothing wrong w/ me..very irritating. But I would DEFINITELY push for further testing! God Bless ~Melissa

judyhobbs

Posted by @judyhobbs, Mar 27, 2012

My chiari is 7mm,but the chiari org. says that the size isn't always a gage to go by. They suggest any size chiari should be evaluated by a neurosurgeon. I think you & I have already experienced being treated with disregard; I'm thankful to be connecting with other sufferers, because it reassures me that i'm not just crazy. Good luck. Judy

navydad

Posted by @navydad, Mar 10, 2012

do not get it operatedon if youcan help it,, they did to me,, and two weeks later i was in the hospital with a temp of 105,, menigitis,, spinal fluid leakingout of my neck,, and i;m in worse shape then ever,, do not get it operated onunless you cant take it anymore,, make sure all test are donw,, it is not a easy operation,, rememebr,, they are operateing on teh brain,,

roni4

Posted by @roni4, Mar 17, 2012

Where did you have your surgery done?

judyhobbs

Posted by @judyhobbs, Mar 28, 2012

Do you know of any treatment for chiari, other than surgery? So far , I just can't find an answer to my symptoms that seems to fit better than chiari, but surgery is so serious. I am so sorry that your experience was so bad. How long ago did you have it and how are you now?

navydad

Posted by @navydad, Mar 28, 2012

I had the surgery in Aug of 09 at Presby Hospital in Pittsburgh, it was a nightmare,, but I wasgettingso bad that I waswilling to try anything, I was told it may help and it may not,,frommy post you can see it did nothing but leave me with a scar on my neck,,and a patch onmydura that I fear willcome apart some day,,as for how I am doing,, in a word,,horrible,, I lost all feelinginmy hands,,myarmsburn,,my legs burn,,my feetburn,,I talked to theneurothat saw me at Mayo,,and they are cluelesson whatis causing my CNS problems,,againinthe day and age,, youwould thinkSOMEONEcouldfigure it out,,I dont know of any other treatment for Chiari other then to take painmeds for the headaches,, but if you handle it,,do NOT get the surgery,, get 2nd, third and 4th opinions if you have too,,dont rush into this,, its notlike your getting a hangnail removed,, this is big time surgery,, the recovery is horrible,,youcant move,,you needsomeone to slide you back up in bed if you slide down,,youforget how to walk for a while,, you begin to wonder if your evergoing to move again,, tthen you worry about infection and post opcomplications,,no,,if i hadto do it again,, I sure as hell wouldnt,,

roni4

Posted by @roni4, Mar 17, 2012

I have chiari type 1 with large syrinx I will be having surgery on April 24 at Rochester mayo clinic I've dealt with migraines most of my life if I didn't have the syrinx I wouldn't need the operation

navydad

Posted by @navydad, Mar 28, 2012

what are your symptoms with the syrinx,, have they warned you ofcomplicatins,,such as needing a shunt,,sometimes they makethings a lot worse

desperate

Posted by @desperate, Apr 15, 2012

hi desperate here,i have arnold cchiari malformation i have been sick 4 /7 years.and getting sicker daily i can hardly walk anymore as i have pain in my feet,legs,arms,hands,awful burning sharp,tingling. numbness,it all started with back,neck injury.also i took milleral 30 yrs. and stopped it.i had pacreatitus 4 a month/had part of my pancress removed/spleen/galbladder out. had a 4way bypass. surgery for the arnold c. i now have high blood pressure anemea /get procret shots monthly.as i can,t make red cells anymore ,had back operation 4 spinal stanosis .i have gout,i don,t drink alcoholi had stints put in my legs,kidneys i feel like i have the flu all the time ,stomach pain,low grade fever, high white count. and bad neropathy and drs don,t know whyplease help me if you have any answersor ideas.god bless.desperate

inquizative

Posted by @inquizative, Apr 15, 2012

Dear desperat, I don't have any answers for you but I wish I did. I feel very tired and sick from my Hep C and liver cherosis. So I at least can sympathize with you. God Bless, Inquizative

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