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Postby PRINCESSA4U » Fri Dec 19, 2008 9:48 pm

Hi Everyone:

Well I should have told my story a long time ago but I always feel for someone who is going through what I did. First let me start by telling you that I was diagnosed with Chiari Malformation Type 1 October of 2000. Prior to that time I had never heard of it. As a child I was ALWAYS very clumsy and forever getting hurt. I remember 1 time specifically when I was in about the 4th grade, I was in gym class running around and all of a sudden I saw spots and I ended up smacking into the wall! I was always tripping and losing my balance. What I did not know at that time that it all stemmed from this disease that I would be diagnosed with at the age of 32. I had been in 3 car accidents so headaches were a norm for me. I was working full time and going to school full time at night. One day I woke up and was extremely dizzy and and practically no balance. I went to see my doctor and she told me it was vertigo, game me medicine and told me I would feel better the next day. WRONG!!! The next day I woke up not only dizzy but I felt like someone was standing behind me and kicking my neck and head and well the nauseousness only made it worse. Within 1 week I saw a neurologist and 3 neurosurgeons who all told me that I needed to have surgery. I could not understand why? If I only had headaches, dizziness, why? Well one of the doctors that I saw sat down and took the time to explain to me exactly why surgery would help and what would happen if I did not get it. That wonderful man was Dr. Fred Epstein out of Beth Israel Hospital in NY, may he rest in peace :( He was my angel. Dr Epstein told me I would get only worse and he opted for the surgery to actually expose the dura which none of the others did because he said the chances of a 2nd surgery would be slimmer. Well on January 3, 2001 I had surgery. I had complications after due to reacting to mediction but as soon as I woke up, I could notice a difference. Right before surgery I had lost feeling in my right arm and hand, my balance was horrible, dizziness and my vision started going. THANK GOD for Dr. Epstein!!! To this date I have had no complications. It took a good 2 years for the headaches to subside and I moved to Florida for the heat and that helped. I am back in Ny and I can now deal with the cold. I use a hat in the winter and as long as my head is warm, no headaches!!!! I will always suffer from headaches but I try to go for massages when I can and that helps alot! I feel extremly blessed that 8 years later I can say that my quality of life is so much better and I have Dr. Epstein to thank. I was terrified prior to surgery but he made my experience so much easier. I know he had various colleges in Beth Israel and New York University who worked with him for years so if anyone needs a doctor I highly recommened you look into those two hospitals. I am grateful that Dr Epstein changed my life for the better and I pray that you will all find the peace and healing that I did!!!

God Bless
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Joined: Fri Dec 19, 2008 9:22 pm


Postby wendi » Tue Dec 30, 2008 9:30 am

Thanks for sharing. It is always nice to hear of the success stories.

Take care!
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania


Postby Lisa+Lynn » Mon Jul 20, 2009 8:53 am


Has your dizziness/vertigo ever gone altogether. My mom (Lynn) woke up with vertigo and no balance 6 weeks post op and 8 month later she still has dizziness everyday. Her op was in Sep 08.

Any tips?

Thank you

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Joined: Mon Jul 20, 2009 6:59 am

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