Chiari Malformation Community
I'm freaking out and very scared!!!
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I'm freaking out and very scared!!!

Hello, everyone. I've read everything I can about Chiari Malformation and nothing has mentioned death!
In 2007 my fiancee had her first (and only so far) surgery for CM. Recently she has experienced painful headaches, neck stiffness/pain, blured vision, numbness to the back right side of her head going down into the side of her neck at times, nausea, dizzy spells, impaired speech and fatigue. Our doctor has felt on the back of her head and seems to think that the mesh they used in her surgery has shifted. The back right side of her head also appears to be swollen and you can feel a knot that the doctor said could be a screw that's holding the mesh in place coming lose?? I'm confused as to what is happening to my fiancee and I'm scared. Can she die from this?? We live in Oklahoma and I know people make fun of Okie people being dumb and all, but we have some very good research hospitals in OKC. Anyone on here from that area and can recommend a Nurologist? We've found out she may need another surgery and was told by our doctor because she's already had one surgery she may not make it through another... I've cried for 2 days straight. Please can someone tell me something?? Thank you so much, and God bless you all...
Amanda
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1823499_tn?1370093889
I'm 33 and I've had 2 decompressionsurgeries both a year apart and I too worry about my plate coming lose
It hasn't but I'm always thinkin it will.
Why on earth would her dr say she may not make it? Does she have a diff medical condition that would affect her during surgery? Run from that dr. He/she sounds like bad news...  .
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4816750_tn?1368808270
Hello Amanda,

You can look on here and see several people have had more than one surgery.  I have had only one. and pray that is the only one I have but only God knows this.  Like Sexybare said run from this one, telling you she may not make it, unless something is serious wrong you are not telling us.  Yes I have read and they do say the sypmtoms can come back, so get her to a specialist.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I know of a member that had the mesh and a screw came loose and she had  to have it removed and is doing fine now....we have had many that had more then one surgery.

May I ask y ur Dr is saying he does not think she will make it? Does she have other medical issues?

U need a Neurosurgeon that is a Chiari specialist not a neurologist...we do have a list here for u to use to research Drs as the list is not a referral or endorsement....

U may  find u need to travel to get to one of these Drs as many of us have....

Next, does she have copies of ALL of her testing, MRI's and the reports including her surgical report, these will help the next Dr figure out what may be going on.

I know much on line does not mention death, and for most that have passed it was with a Dr that was inexperienced and poor care, or an underlying medical issue...but, it has happened....but it is not a typical reaction to this surgery no matter how many one has.
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5248920_tn?1365560687
My fiancee has many health issues. Infact as much as I don't find it humorous, she often jokes that she was made with recycled parts.
When she was 16 years old she was diagnosed with Chrone's Disease. She's almost 36 years old and has had a total of 36 surgeries. One being from her CM and the rest related to her Chrones. She has only a small amount of her large intestines left and now has an Illiostomy. When she catches a small cold, or the flu it normally turns into pnemonia (pneumonia) and takes weeks for her to recover. She also has days that her stomach feels as if it's on fire and has lots of cramping like pain.This ontop of CM has always been a struggle for her. Our doctor has always had my fiancee's best intrest at heart, but like MANY doctors, she's not completely familar with CM, but at least she knew what it was. I have to say, reading everything I can about CM and getting y'alls feedback has made me feel a lot better about what my fiancee and our family is going through. I thank you guys so much! I have found a Neurosurgeon in OKC that specializes in CM, however, according to his online profile, he only treats children. I do plan on getting intouch with his office and asking if he may be interested in taking my fiancee as a patient. Fingers crossed. Again, thank you all for your kind words.
Amanda
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620923_tn?1405964489

  Good luck ...fingers are crossed...do let us know if this Dr u have in mind helps...and if so who it is so he can be added to our list if he is not on it already....

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