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Losing Hope!!

Jul 30, 2012 - 3 comments
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Chiari Malformation type 1

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losing hope

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treatment

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symptom

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Kids



I was born with Chiari Malformation Type 1. Some go all their life with no symptoms how ever I started showing all signs and symptoms when getting pregnate @ the age of 19. They say pregnancy triggers the Chiari, and that's what happened in my case. I had been sick for 5 yrs doctors couldn't find anything wrong they said i was too young to have something wrong with me. I was driving down the road with my 2 daughters and woke up in the grass, That was the scariest time of my life. They done some test at the hopital and told me I had Chiari Malformation type 1. I was relieved  excited & thankful that they finally figured out what was wrong with me and I thought I was finally gonna get the help I needed. Little did I know That 4 yrs later I would still be waiting to get treatment answers and relief from this agony I am in. I have done so much research continue to see my neurologist, and am losing hope at ever having a normal life. My neurologist proceeds to tell me that there is something else going on and keeps testing me yr after year. So my life continues to stand still and I'm always in agony. Not the way I pictured my life at all. It's hard to go on but my kids are constant reminders that I have to keep going even when I can barely move. I want to think that one day I will get some answers and finally feel alive again but it's slowly fading away from me. Sincerely, Losing Hope!!!

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by mazie95, Jul 31, 2012
Hello, I just found your journal entry as I was browsing MedHelp. I'm very sorry to hear what is going on. I too have had a Chiari Malformation. I was told I was born with it. My Neurosurgeon operated on it back in June 2007, and luckily it took away the headaches when I laughed. I still have some problems, that I believe may still be linked to it though. I know that if you have a Chiari Malformation, there are a lot of other conditions you could have with it as well. A MRI of the head is the best way to tell if you have the malformation or not. They should NOT be putting it off. I would go to another doctor if I were you, because to me, it sounds like the Chiari is giving you a lot of trouble. Surgery isn't fun, but it is the only way to help relieve the symptoms that it causes.


Believe and Pray to the Dear Lord God (Jesus Christ) and he will help you. Please accept him into your heart too if you haven't already. He loves you and has his arms out wide waiting for you to accept him. He will really change your life for the best. He has helped me numerous times, and I know that he would be willing to help you too, if you let him.


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by Sexybare, Jul 31, 2012
Click onto the chiari community. You will find all sorts of info and can post questions and comments. Welcome to our chiarian family my dear. And yes you need to seek out a chiari specialist and drs willing to understand your condition. It took me 8 long years for my dxs. You need the right drs so start getting other opinions. Do u have recent mris and all? If so its free to send them to a true chiari specialist and they will contact you with their opinions. Then go from there. My ns is dr oro in colorado at the chiari care center. I travel from michigan to see him. He's fantastic.

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by katie162, Aug 02, 2012
Listen honestly to both of them they are right, chiari is a horriable quiet evil disease! but the only when to try to get the right help is to find a true chiari speicalists NS. Alot of people have gone to many of them to get other opinons myslef has seen about 5 neurosurgents and finally found one who will be performing my 1surgery soon:( we all dont want it done but honestly ive heard and my NS told me the only way to try to get some relief and symptom free is the operation no one on here wants it done but we all know we need it, when you see a NS youll know in you heart he or she is the one n youll know its time to get it done. Hopefully you find the right doctor to help you again find a specialists whos a true chiari specialists.Good Luck hun and hopefully you find hope and relief down this longgggg road ahead and welcome to our family!

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