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jalexander4@ma.rr.com
@jalexander4marrcom

Posts: 3
Joined: Jan 10, 2012

Chiari Malformation Type 1

Posted by @jalexander4marrcom, Jan 11, 2012

My son was just told that he has Chiari Malformation Type 1. He is 39 yrs old, The nurse told him over the phone, his appt with the family doctor isn’t until next Tuesday.

What can we expect? I’m very worried. Should he get a 2nd opinion right away?
Thanks
Worried mom

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Roni4
@roni4

Posts: 19
Joined: Nov 23, 2011
Posted by @roni4, Jan 28, 2012

I was recently diagnosed with chiari 1 malformation with large syrinx I will be going in for surgery they will be removing part of my skull and spine and putting in a patch i am really scared I’m only 20 and have a daughter to take care of.

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gigiwolf
@gigiwolf

Posts: 1
Joined: Jan 28, 2012
Posted by @gigiwolf, Jan 28, 2012

I have a niece who was diagnosed last year and had the surgery. She, too, was young with 2 small children. I have seen such a dramatic improvement in her overall quality of life. Find a doctor in Houston or a doctor knowledges in this condition.

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jalexander4@ma.rr.com
@jalexander4marrcom

Posts: 3
Joined: Jan 10, 2012
Posted by @jalexander4marrcom, Jan 31, 2012

We are praying that he does not need surgery. That is wonderful that your niece is doing well. We live in Indiana but we have a medical university 75 miles from us. If he needs surgery we will be going over there. Please say some prayers for my son.


jalexander4@ma.rr.com
@jalexander4marrcom

Posts: 3
Joined: Jan 10, 2012
Posted by @jalexander4marrcom, Jan 31, 2012

Thank you for replying. We are hoping he does not need the surgery. I pray God watches over you and the surgeon and his medical team. My prayers are with you. Pray for us also.


lawalker
@lawalker

Posts: 2
Joined: Mar 23, 2012
Posted by @lawalker, Mar 28, 2012

I’m 46 yrs old and just found out I have chiari 1 . I live in Indiana too I’m in the process of trying to find another dr that has some knowledge of chiari. Has your son been having any symptoms? I had the MRI because of dizziness and they found the chiari with 6mm herniation. My neurosurgeon did ordered a cine MRI to check the spinal fluid. He said that came back fine. So he isn’t doing anything else. He said he wasn’t sure if a would have more problems after surgery so I just live with my symptoms.


Ms joyce
@msjoyce

Posts: 6
Joined: Aug 06, 2012
Posted by @msjoyce, Sep 18, 2012

For those of you looking for answers to this medical issue of Chiari Malformation. My daughter who is now 49 had the surgery 10 years ago…is living a normal life. Thanks to the medical staff at National Institute ofHealth. My daughter just posted this webpage for more up to date information. Hope its helpful.
http://www.conquerchiari.org

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