New to forum and looking for guidance

Hi, Last week I reviewed MRI results from 11/2009. The MRI was a year follow up to davf repair and aneurysm stent. I had not previously noted the report indicated the presence of a 5 mm cerebellar tonsillar ectopia. I was never informed of this and in 1/2010 switched to different health system due to cost. I am pretty sure no one at my current health system was aware of this issue. From what I have been able to find online it appears the ectopia would meet the diagnosis of chiari. I'm thinking symptoms which I have attributed to either the unruptured aneurysm or the davf may actually be due to the cerebellar tonsillar ectopia. Symptoms such as ongoing balance issues (minimal but occasionally noticeable to others), headaches (but seldom at back of head), short term memory issues especially when tired, difficulty with finding words, sensitive to light and sound, excessive sinus drainage, general feeling of weakness on some days, tinnitus off and on. I also have frequent hoarseness which I attributed to excessive sinus drainage and have bi pap due to sleep apnea, mixed but I am also overweight, to which I attribute the sleep apnea.

I am trying to get an appointment set up with a local neurosurgeon but it appears it will be taking a while. I'm wondering what follow up might have been expected if I had been aware of the ectopia in 2009 and recommendations for what I should ask to have done currently.

Any feedback would be welcome.

Thanks!

Hi, rose! Go to Info for members section. There is a list of questions you should ask youd doctor and tips on preparing for a visit.

In your case there are multiple possible causes for your symptoms, and it's very possible (in my opinion) that there is more than one cause. To determine what is what(if at all possible) you need a good doctor to work with you and 2nd opinion will never hurt. If your doctor tells you " X isn't causing your symptoms," ask them "What makes you so sure? What else could it be? How will we find it out?" Always go for your doctor finding the cause, not just saying that something isn't the cause. It is possible the doctor will not be able to be 100% sure of the cause, but it's important that they find the most likely one (or more).

In the mean time, keep on educating yourself about Chiari and your other diagnoses, because it will help you greatly to understand yourself and find the best help from doctors.



Fugu said:

Thanks Fugi. I appreciate your input!

Hi, rose! Go to Info for members section. There is a list of questions you should ask youd doctor and tips on preparing for a visit.

In your case there are multiple possible causes for your symptoms, and it's very possible (in my opinion) that there is more than one cause. To determine what is what(if at all possible) you need a good doctor to work with you and 2nd opinion will never hurt. If your doctor tells you " X isn't causing your symptoms," ask them "What makes you so sure? What else could it be? How will we find it out?" Always go for your doctor finding the cause, not just saying that something isn't the cause. It is possible the doctor will not be able to be 100% sure of the cause, but it's important that they find the most likely one (or more).

In the mean time, keep on educating yourself about Chiari and your other diagnoses, because it will help you greatly to understand yourself and find the best help from doctors.