Hi, res5562965,
I am new to this forum. I looked up Chiari Malformation and found your posts, along with posts from other people. Yours interested me because of your 8 shunt surgeries being done at University Hospital in Augusta, and your decompression being done at Emory by Dr. Daniel Barrow. If I remember correctly, you said in another post that your shunt is helping you. I am so very glad. My shunt has been a major blessing to me as well.
Do you have a local neurosurgeon to follow you? The other Chiarians I know have had trouble finding a local neurosurgeon to help. All three of my Chiari surgeries have been done out of state (NC and NY). All the neurosurgeons I have seen in Augusta have told me that I am too complicated. I do have a local neurologist, but he doesn't know much about Chiari. He has 3 complicated Chiari patients (the other 2 are my friends) and he doesn't want any more Chiari patients.
I have a neurosurgeon in Roswell, GA, who is managing my vp shunt. My vp shunt and I have an anniversary coming up in January. My shunt will be in me 10 years this January 2013. This neurosurgeon is helping some of my Chiari friends who live in various places in Georgia. I started several Chiari support groups on Facebook: (1) Georgia Chiarians (which has almost 90 members) and the local CSRA Chiarians group (which has about 10 members--not all from the CSRA--some are about an hour away). We had a Chiari walk in Atlanta in September and had over 100 people there--22 of which were Chiarians of all ages, etc.
I am in your age range. I was diagnosed in September 2000, but I have had Chiari symptoms since I was a very little girl.
I am hoping we can talk. I am trying to start a local Chiari group. There are about 5-6 of us to start the group--that I have found so far.
By the way, my name is Martha.
I hope you will be getting on here very soon and will see this.
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Originally Posted by res5562965
I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)
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