Thank you all for the words spoken here it’s been what I have searched for so many long years.Lives are being lost and even if not by death our lives are lost because we’re to sick to live them.We are losing our sanity because Dr.s tell us we’re some kind of crazy people plying for their attention.I would be glad if I never had to see any of them again! But there’s nowhere to turn!I thought I had found my answer but after visiting my NS,which I am so thankful for.I get his report in the mail after a couple of days following and read that I have dysautonomia which wasn’t even discussed.I told him about the dimming eyes upon standing,still lots of balancing issues and pain that hasn’t resolved itself,ringing,flushing noises in the head,profuse sweating,it would have been nice to know this before I left the office,this leaves me not knowing what to do next.It always comes to chiarians having to make their way to answers.I am so sorry for the loss of lives that mean so much to you all.Everyone that loses this battle has had to be a strong warrior in a battle with few to understand.It’s people like you that gives us that strength to go on and at least we are comforted by wonderful friends.It is great to have somewhere to find knowledgeable people like you ladies you have meant so much to me,especially Abby,for so long there was no one that could know the pain,the tears flow because I have chiari friends,no more being alone in this.I am here to help get this message out so this pain and humiliation will someday STOP!!I’m ready to do whatever it takes to make life better for chiari people and other misunderstood conditions that go along with this crazy sickness.
Tracy, I too use healthtap but I did some digging when I first joined and there arent really any chiari experts in there. I love the app and all but when there arent experts in the field you need then I dont really hold much stock in a doctors response. personally, I have a question I want to ask that hopefully the neurosurgeon can answer. You see, when I was born, the umbilical cord was wrapped around my neck. My mom was wondering if that could have had anything to do with me getting Chiari, or any other problems. So, I want to ask that. And with the recent findings of the syrinx in my thoracic spine, I finally get to see the neurosurgeon on Nov.27. Ironically the day before Thanksgiving. Hopefully I will have something to be thankful for other than my family, friends, and my support groups in here.
I don't post much but I read a lot of post that being said I wish I would of read this before surgery! This is great info that everyone should be happy you posted! Thank you from the bottom of my heart!
BEEBA,
I.was just.womderimg.what u.did.for.the instability as my.daughter had been.diagnosed with it.and we cant.seem.to.get.two neuros.to agree as to.whether she.needs surgery or not.
Donna
Wait, how did i miss a notice of a member dying? Who died? Oh geez, i hate hearing that someone died from this.
Purple Hearts said:
Does anyone know more about how this member died? Was it because of surgery, or because they didn't have surgery?
I will have to see if i can find it. I know one of the episodes of Dr. G Medical Examiner had a guy on there who dies mysteriously. Turned out to be a Chiari malformation. He was undiagnosed. From what i have read in different Chiari articles, death is rare but when it does happen, it is usually because of a misdiagnosis and isn't caught in time to reduce the pressure on the spinal column. I am sure there are other reasons it can cause death but these are the ones i have read about the most. Either way, it sucks donkey butt!
And here is a bit of irony for you. I grew up with a nurse for an aunt, and many health problems in the family. My dad was adopted and we have no idea what runs in his family and his parents died rather young (mid life). My biggest fear is finding out i have some bad or incurable illness that will ruin my life. ta da.. .i have really bad allergies, adult onset asthma, and now Chiari. I have also recently had my 2nd cancer scare in my chest (first ended up being a fibroadenoma, this one turned out to be benign tissue). So that has been a heck of a rollercoaster for me.