Hi. My name is Beth. I'm a 43 yr old mother and nursing student from Tn. I am very happy to have found this forum! I recently underwent a CT scan to check for strokes. There were no strokes but there was an incidental finding of tonsillar ectopia. The dr brushed it off as nothing because she really did not know anything about it. The radiologist had to google it and print something that gave me a brief explanation. I left there thinking I had a simple, congenital deformity that would never cause me any problems. When I got home I began to research and found that I probably had a very serious condition called ciari malformation that was causing the tonsillar ectopia. I have symptoms, the worst of which is pressure in my head when I stand up, lift, strain in any way. I thought it was sinus related. I read something a dr posted that said the prognosis was poor for those who's chiari malformations were visible on CT scans. That scared me. Is that a correct statement?
No...sorry but mine were visible and I am still here post op too....that is a statement from an uniformed Dr...so, that leads me to the fact that u will have to research and find the right Dr for u, one that is a true Chiari specialist....keep in mind u may have to travel to get to one, so check ur ins to see what u can do, if u need a referral etc....
We do have a list of Drs that members here have been to and liked, However the list is NOT a referral just a tool for u to use to begin ur research.
If u have questions also note there is much info in the Health Pages -http://www.medhelp.org/health_pages/list?cid=186 as well as other info and tips on Chiari and related conditions. U can also use the search this community feature to research questions asked b4, and see what some of the older threads contain info and support wise : )
Know u r not alone, and all of us here either have Chiari or a loved one with it....we will help guide u as best we can : )
Hello and welcome to a community on the internet. I am from New Tazewell, TN so hello neighbor. I had my diagnose in May of last 2012. I am not sure on CT scans. My doctor was Dr. Snyder at UT. Your symptoms sound like mine was on some things. He is good on Chiari and knows what he is talking about. I had my surgery in july 2012 and doing good. So if I can help let me know.
That can be from rushing into surgery with the first Dr that offers it....I truly feel we need to know about all related and underlying conditions b4 we do as so many of them can affect how we feel and heal post op.
Thank you Frankie! I am in Harrogate. We really are neighbors! I am glad to know you found a good dr nearby. I was afraid I would end up trying to get to another state. I will call Dr Snyder Monday and that is where I will start my journey. I hope I don't have to have surgery but if my symptoms threaten to become debilitating I will. Of course I haven't even had an MRI so I don't have an official diagnosis. I'm so thankful to have found this community.
I won't be rushing into surgery. I am very phobic! Surgery will be a last resort. I can handle the symptoms I have now. Does the tonsillar ectopia get worse? Do they slip further into the foramen magnum?
That is good to know...not that u r phobic, but that u will not rush into surgery...as it is not a cure, and u can develop issues, this is a major surgery and there are risks....u will know if and when u need it.
But as I said it is important to know ALL the related and underlying conditions and issues b4 u consider surgery.
The herniation can increase in size and in the way it is obstructing CSF flow, so ne new symptoms u should report to ur Dr so they can monitor what is going on,.
That is a lot of stuff to avoid. Every day things from every day life. It gives me a very hollow, depressed feeling. I am just starting my journey to become a registered nurse. We have to be able to lift and we have to function in a high stress environment. My studies require me to read a lot so my head is always bent forward. I am not one to feel sorry for myself but I guess this just makes me angry! I finally figure out what I want to do and need to do for my family and THIS shows up on a CT scan. At least it is not cancer or the like. I'm sorry I am venting but it is all new to me. I can't believe I laughed about having a "deformed brain" when the doctor told me about the incidental finding. If I had had any idea I would have screamed instead.
Get one of those book holders so what u r reading is at eye level....that way ur neck will not be bent.
Vent all u need to...we all have to release the feelings we get from this and it is like grieving there r stages...not just to the DX but the recovery from surgery as well....so denial, anger,grief, and acceptance all come into play at some point.
Many of us have felt just like this....so know that is also normal.
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