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  • chiari malformation

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    Old 10-22-2007, 09:51 AM   #1
    penny9073
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    chiari malformation

    I have a few questions about Chiari Malformation. I am a 40 year old female. I have always had really bad headaches and about a year ago I developed a really bad pain in the base of my neck it is still there today. The pain varies from day to day I have seen several Doctors. In a MRI the found a cyst in that general area but say it nothing to worry about. In the past year my blood pressure has became very high and I keep a pulse rate of 110 to 125 a minute. I have pain in all the points of a fibromyalia person ,Chromic fatigue and Raynaud's Phenomenon. This is what the Dr. say I have. I had heard about Chiari Malformation and just thought I would try to find out more about it only because of the Arachnoid cyst.

     
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    Old 11-05-2007, 06:55 PM   #2
    texastee59
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    Re: chiari malformation

    Quote:
    Originally Posted by penny9073 View Post
    I have a few questions about Chiari Malformation. I am a 40 year old female. I have always had really bad headaches and about a year ago I developed a really bad pain in the base of my neck it is still there today. The pain varies from day to day I have seen several Doctors. In a MRI the found a cyst in that general area but say it nothing to worry about. In the past year my blood pressure has became very high and I keep a pulse rate of 110 to 125 a minute. I have pain in all the points of a fibromyalia person ,Chromic fatigue and Raynaud's Phenomenon. This is what the Dr. say I have. I had heard about Chiari Malformation and just thought I would try to find out more about it only because of the Arachnoid cyst.
    Hi Penny,

    My name is Tammy and I have a sister with Chiari malformation and is presently in NYC with our mother. This is really weird because I just moved from Vidor, TX, if you can believe it!!!! It kinda freaked me out to find you. Anyway, I have been diagnosed with fibromyalgia since 1990 and we just discovered that my 46 yr old sister has to have the surgery for Chiari malformation. I am having a hard time finding info on the extended part of this diagnosis and surgery. You see, she also has spinal cord tethering, which seems to be something discovered in other instances with small children.

    My heart goes out to you and yours. Please let the Chiari Institute look at your MRIs and see what they think. Just google chiari institute and you will find them. It's a pity they are so far away, but it is their specialty. The tethering part is not on their website yet unfortunately and so here I am trying to research that part of it. She will definitely need surgery in December and then a second one for the tethering later.

    Thanks for letting me vent and my prayers are with you.

    Tammy

    Last edited by texastee59; 11-05-2007 at 06:57 PM.

     
    Old 11-27-2007, 03:00 PM   #3
    chiari727
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    Re: chiari malformation

    Both of my sons have chiari malformation and I was wondering if anyone knew about how it is transmitted. Is it genetically transmitted and if so is it dominate, resessive, sex-linked,ect.? What kind of mutation causes this disease?

     
    Old 12-08-2007, 07:57 PM   #4
    Roy47
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    Re: chiari malformation

    Penny,

    I am a 48 year old male and I was told that I have this very condtion. It was around 3 years ago.. It started with numbness on the left side of my face and a low ringing in my ears... It was thought at first that perhaps I had a light stroke. AN EMG test - the measure and shock thing mapped it out as well as a MRI of the brain found this out to be my problems..

    It is to the point now that I have to get another one as soon as possible. Last year about this time it was labeled a mild case and we decided to leave it alone and see how things go... I think it is getting worse all the time...
    I am really starting to worry about having the surgery done in the not to far off future...

    The entire left side of my face and neck are numb for the most part. The ringing in the ear is getting very loud and recently I am almsot coughing all the time. I have lost 6 pounds in a week and cannot hardly swallow and I went to the doctor and they took XRAYS of the chest and nothing is wrong... I had blood tests and urine tests done 2 weeks ago and it all tested to be normal what ever that is

    It feels like someone has an ice pick and at times is beating my head, my short term memory sucks as well, from the research that I have done in the last 3 years shows that they think that it could be from a shortage of a vitamin or mineral while in the "womb". There are different thoughts in this area. I have tremendous pressure behind my left eye at this time as well.

    I have different feelings at times about this: Things could be alot worse,things could be alot better. I spent 24 years in the ARMY and retired a little over 3 years ago, I have had major back surgery last year, became diabetic as a result of this surgery and now this continues to worsen all the time slowly it does it thing and I try to adjust to it as well. Adapt, Adjust and overcome...

    I am married and we have 2 girls one will graduate this spring from high school and the other one is a freshmen this year in high school as well.
    The wife and I are fortunate as they are great girls... I want to show them that one can over come little things in life as well as major things in life as well. I can no longer do so many things that I could do 3 years ago and I guess it is the way it goes...


    I am starting to ramble... SORRY
    roy47

     
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