My name is Erin. I'm 25 and have had CM type 1 with Syrinx. It all started with migraines that I thought were just headaches. I also had trouble sleeping. After countless visits to my family doctor, he ordered a ct scan, which showed an abnormality and an mri was ordered. December 8th of 2008 was the day that changed my life completely! After being referred to the university of iowa hospital and the neurosurgeon telling me he would not operate. I had to figure out my next step. The hospit referred me to a neurologist in Des Moines that worked with a lot of MS patients. After talking and meeting him in was feeling confident that he would help. He explained he would do what he could to make sure I didn't have surgery. Which was comforting. Cause at that age and point I'm time I was scared. Over the last 8 years, I have had my symptoms get worse, and New ones come. It's scary finally after failing all migraine medicines out there I asked for a.second opinion.on surgery. He referred me to a neurosurgeon that told me he would.operate and that I should.of had it done 8 years ago- so as you can imagine of was a little frustrated. Now I am scheduled for surgery March 8th. I'm stl scared, but I have talked to a few people that have had it and they have told me that they feel like a whole new person and so for that I am excited. So please if you have any tips please feel free to share.
Erin, I don’t have any tips and know very little about Chiai. I do know how bad the headaches can be from watching a friend with them. I do know how scary it is to think about surgery. I will send prayers,love, and light for you. I hope that your surgery and recovery go well and you have a pain free life. Namaste,Barb
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Erin, I don’t have any tips and know very little about Chiai. I do know how bad the headaches can be from watching a friend with them. I do know how scary it is to think about surgery. I will send prayers,love, and light for you. I hope that your surgery and recovery go well and you have a pain free life. Namaste,Barb Reply
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Erin, I don’t have any tips and know very little about Chiai. I do know how bad the headaches can be from watching a friend with them. I do know how scary it is to think about surgery. I will send prayers,love, and light for you. I hope that your surgery and recovery go well and you have a pain free life. Namaste,Barb
HI, Erin! I too was first diagnosed around 8 years ago, but I didn't get any treatments and stopped seeing doctors, because I did not understand the diagnosis and was told there is no treatment. I started getting worse 7 months ago and fond out what Chiari actually is and now am seeing doctors again and having tests.
Hope your surgery goes well and your recovery is fast!
Hi Erin!! I have not had the surgery yet, but know it’s inevitable for me, one day… Good luck with your surgery and prayers for a speedy recovery and resolution of your symptoms! Please let us know how it goes!
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