I'm having chiari decompression surgery in three days, since I was dianosed I've been begging my oldest daughter to get a brain mri, she's had severe headaches that come and go, severe anxiety, she also has chronic upper back pain, also lower but the upper is worst and we all thought due to car accident but now I'm not so sure, she also has scoliosis a number one symptom of chiari, plus with me having it and it running in families I have a feeling that she has it too. I'd like to see her have the mri even if just to rule it out.
Alex
tell your mom to take her to mayo clinic in rochester, mn. I have been suffering with all kinds of issues myself..severe headaches, numbness, etc. etc...the idiot neurologist and neurosurgeons in st. cloud, mn couldn't figure it out..was told i had them baffeled..like i was full of it..went to mayo and almost right away found out it is chiari malformation...my cerebellum is in my spine!! how could they not have seen this, i don't know! Dr. Petty at Mayo is awesome!! he listens and is amazingly thorough! i guarantee if anyone can figure it out, mayo can.. good luck, hun!!!
thank you for your comments. We are researching neurologists in the area to see if any are familiar with ACM, hopefully we find one. If not my mom said she will fly my sister to one in another country.
I agree. It sounds like Chiari but she should see a neurosurgeon who is a Chiari expert. A lot of doctors have never even heard of Arnold-Chiari Malformation, so see if you can find an expert in your area.
Like Aussie said, a good doctor will explain things to you, but remember that you sometimes have to ask. Sometimes doctors can be intimidating, but keep in mind that the doctor works for you - demand an explanation from them if you have to. You and your sister need to get notebooks and keep track of symptoms on a daily basis and write down questions as they occur to you. This way, when you go to the doctor you don't have to rely on memory to explain or ask questions. And write down the answers, because doctors often talk in big fancy sounding words. Get them to explain things and spell words that are unfamiliar, so you can research on you own.
First of all I just want to say that I am not a doctor, but if I were - I would think somebody's brain "sitting low" would be just a bit odd and would need looked into. I'm not sure what kind of doctor your sister sees but, a good doctor would try to explain why her brain is sitting low. I can't really say if it is chiati or not, but her symptoms sound like it, and I have heard chiari referred to as a "sagging" brain. Also, it is possible that the reason her doc says "sitting low" rather than chiari is that maybe your sis has chiari with a 0mm herniation, in which case I don't believe the trademark sign (tonsillar herniation) of chiari is as apparent. Your sis may want to get a second opinion, post her MRI online, or just cut to the chase and see a chiari specialist. As for the headaches - they aren't always severe. Mine feel like pressure at the base of my head. Almost like something is inside my head pushing out - so don't be fooled by mild headaches. And if your sis has chiari, tell her to get an MRI of her whole spine. People often get something called a syrinx in their spine with chiari - which causes the neck, shoulder, and back pain - it sounds like she may have one. You can get more than one however, and you can get them anywhere in your spine - which is why she should get a complete spinal MRI - with contrast.
Good luck - tell your sis to hang in there, if she finds the rigth help - quickly - she may save her self a lot of grief later.