Chiari Malformation and Syringomyelia are considered rare conditions that effect the nervous system. Many have this condition and live with pain and don't even know they have this. It is so rare many doctors have never heard of this these conditions. Please take the time to look at The Chiari Institute and the American Syringomyelia Alliance Projects web sites. They are in my favorite links They are very informative. You may help someone you know.
This is my story! About 8 years ago at the age of 21 I began symptoms of having pain in my left elbow. Doctors say I had Tendonitis. A few years went by the pain traveled to my shoulder and neck as well. Doctors say I had Thorocic Outlet Syndrome. I went for physical therapy which did not help me it was only a temporary relief. So I was finally sent to have an MRI or my cervical and thoracic spine. The MRI report noted I had Chiari Malformation and Syringomyelia.
Symptoms I have includes the following:
Chronic pain at the base of my skull, shoulder and arms. Occaionally the pain runs down my leg.
Very bad headache occasionally. Most have them Frequently
Slight hypermobility.
Tinnitis (Ringing in the ears)
Twitching in finger
I had many opinions the last opinion opted not to due surgery at this time. The MRI showed a third problem the 3 other doctors did not see. Along with the Chiari Malformation, and Syringomyelia, I also had a condition known as a Retroflexed Odontoid. According to the doctor my C1 is like the leaning tower of piza. Which is putting pressure on my brain stem. He said surgery at this time with the symptoms I had would be a mistake. He said that treating the Chiari could have made the C1 break and I could end up 84lbs. and throwing up all the time. Now I am not saying to have or not have surgery. My lesson for you is just to do your reasearch before you make your choice to have surgery. There is so much information out there on the internet. Research who are specialist in this field. My opinion there arent many. The last doctor I met with was a angel from heaven. Ask them how often they performed the surgery known as a cerebellum decomression. You want to know that you are making the right choice. If you are not comfortable with the diagnosis continue on until you are. Don't just jump into something before you get the fact. You are worth everthing god intended. I believe there are reasons why these things happen to people. Try to keep the faith you are not alone. Dealing with this has made me a stronger person and closer to God. If I can help just one person become aware of these conditions then it was worth the time to prepare this web page!
